› Forums › General Melanoma Community › AM LOOKING FOR OTHER STAGE 3A MEMBERS PLEASE TO SHARE THOUGHTS
- This topic has 114 replies, 15 voices, and was last updated 7 years, 8 months ago by
Lorri from VA.
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- February 28, 2012 at 7:20 pm
Hi,
I really would like as many stage 3A friends on here as possible if you would please respond… I find myself with all sorts of issues, questions, feelings, well, everything that sometimes I feel is either too heavy for earlier staged melanoma patients, or way too trivial for even more advanced staged patients… please get together with me if you would… if you were previously stage 3A and would like to share I would appreciate also. Right now everything is so new to me…just need to express how I feel and don't want to offend anyone.
Hi,
I really would like as many stage 3A friends on here as possible if you would please respond… I find myself with all sorts of issues, questions, feelings, well, everything that sometimes I feel is either too heavy for earlier staged melanoma patients, or way too trivial for even more advanced staged patients… please get together with me if you would… if you were previously stage 3A and would like to share I would appreciate also. Right now everything is so new to me…just need to express how I feel and don't want to offend anyone.
- Replies
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- February 28, 2012 at 7:57 pm
You are right that not many stage 3a or 3b stick around for very long. That is actually a GOOD thing. That means in most cases the cancer is gone and they go on with their lives.
I am stage 3a. DX in Jan. 2010. This April I will be having scans for my 2 year NED. I chose not to do interferon, but did have all my lymph nodes under my right arm removed. That's really the only reminder that I had cancer, nerves that didn't heal correctly and the occasional problem with lymphedema. But like I am very quick to tell other folk I made a decision and have never looked back. I am grateful to be healthy.
I don't think you have to worry about offending anyone on this web site. It is not just for stage 4 and it can be a very scary place to be. Please feel free to post. The are many knowledgeable people, like Janner, that can help with questions.
Mary
Stage 3
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- February 28, 2012 at 7:57 pm
You are right that not many stage 3a or 3b stick around for very long. That is actually a GOOD thing. That means in most cases the cancer is gone and they go on with their lives.
I am stage 3a. DX in Jan. 2010. This April I will be having scans for my 2 year NED. I chose not to do interferon, but did have all my lymph nodes under my right arm removed. That's really the only reminder that I had cancer, nerves that didn't heal correctly and the occasional problem with lymphedema. But like I am very quick to tell other folk I made a decision and have never looked back. I am grateful to be healthy.
I don't think you have to worry about offending anyone on this web site. It is not just for stage 4 and it can be a very scary place to be. Please feel free to post. The are many knowledgeable people, like Janner, that can help with questions.
Mary
Stage 3
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- February 28, 2012 at 7:57 pm
You are right that not many stage 3a or 3b stick around for very long. That is actually a GOOD thing. That means in most cases the cancer is gone and they go on with their lives.
I am stage 3a. DX in Jan. 2010. This April I will be having scans for my 2 year NED. I chose not to do interferon, but did have all my lymph nodes under my right arm removed. That's really the only reminder that I had cancer, nerves that didn't heal correctly and the occasional problem with lymphedema. But like I am very quick to tell other folk I made a decision and have never looked back. I am grateful to be healthy.
I don't think you have to worry about offending anyone on this web site. It is not just for stage 4 and it can be a very scary place to be. Please feel free to post. The are many knowledgeable people, like Janner, that can help with questions.
Mary
Stage 3
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- February 28, 2012 at 8:12 pm
I really hope that is the case…with many many living in this stage for the rest of their lives… I will type 3A in the search and try and follow someone and then all of a sudden they are deceased… I can't tell you how many times this has happened… Amy Busby was my latest… I started reading her posts…so alive and helpful…then all of a sudden I stumbled across a post from her sister that she had passed… each one I mourn like they were my dear friend… so full of life and taken to this horrible horrible thing… then I process that we are all terminal and live life for today… it's such a cycle… it's such a weird stage at 3A too… I'm not ready for all these new terms I hear from stage 4 yet know I need to be prepared. Everything is an abbreviation…so many treatments…and yet feeling as if stage 3A is standing at the tip of a cliff awaiting it all… I don't want to be Debbie Downer either… but dang, this is a LOT to acknowledge after planning a whole lifetime… if I heard a ton of good stories I would attach myself to them but I either don't see them or see them for a bit followed up by bad news…sooooo, I suppose that is why I am reaching out to other 3A'ers… HELP… I want to find some good endings of long survival…or just someone sharing they feel like I do or what helps them…and lot's of them!!! I don't want people with the good stories to disappear ;( I think we all need them?
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- February 28, 2012 at 8:29 pm
Miss Jean
I think all of us on this board understand what you are going through. We are all scared and do not know what we face tomorrow. I hope you get the advice and support that you need. God Bless you all!
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- February 28, 2012 at 9:08 pm
Hi Elaine,
I know…we are so all in this cancer together at all stages…and I get so much from everyone… it's just there are those specifics to a stage that I feel so bad throwing out there to others dealing with such heavier things to deal with daily, like their current treatments. Like right now, my concern is should I worry about my diet…should I be taking tons and tons of vitamins, is there anyone who's primary was on their back and how they feel when they say the prognosis is worse on the trunk… what their experiences are and knowledge of others with a primary there… are they in stage 4 now? so many stage specific questions…
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- February 28, 2012 at 9:23 pm
But your questions don't just apply to stage 3A. They basically apply to anyone who is NED. I had a primary on my back 10 years ago (and 1 on each leg). I'm stage IB. But why would the question of spread and/or diet and whatever not apply to me?
I know many stage 3a who have moved on over the years. (I've been on this site over 10 years). Why stay here when you are NED and could be out living? You will mostly find the "exceptions" and the people actively fighting disease – or the newly diagnosed here. It's just the nature of the beast. Really, why should I as a stage IB (NED 10 years from my last primary) stick around here? I do it to help the newbies, but I am not here for myself anymore. When it comes to being NED, a stage I, II or III are all in the same position once time moves on. Some may have a higher chance at coming back here, but living life while you're NED is definitely the way to think!
Best wishes,
Janner
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- February 29, 2012 at 2:09 am
Janner,
Thank you for being that person who cares to come back and share and be there as inspiration! it's so so very needed. My good friend was diagnosed stage 1 as well at basically the same time, only she also has Krohn's disease and has to take immunosuppresant drugs. I can't even imagine battling both and dealing with something actually working against you specifically. You are right about having the same feelings at earlier stages…but maybe theres that something in us that just wants to hear from someone exactly as close to the same diagnoses, place of primary, depth of primary, stage and it is impossible…we are all different yet dealing with the same monster.
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- February 29, 2012 at 2:09 am
Janner,
Thank you for being that person who cares to come back and share and be there as inspiration! it's so so very needed. My good friend was diagnosed stage 1 as well at basically the same time, only she also has Krohn's disease and has to take immunosuppresant drugs. I can't even imagine battling both and dealing with something actually working against you specifically. You are right about having the same feelings at earlier stages…but maybe theres that something in us that just wants to hear from someone exactly as close to the same diagnoses, place of primary, depth of primary, stage and it is impossible…we are all different yet dealing with the same monster.
-
- February 29, 2012 at 2:09 am
Janner,
Thank you for being that person who cares to come back and share and be there as inspiration! it's so so very needed. My good friend was diagnosed stage 1 as well at basically the same time, only she also has Krohn's disease and has to take immunosuppresant drugs. I can't even imagine battling both and dealing with something actually working against you specifically. You are right about having the same feelings at earlier stages…but maybe theres that something in us that just wants to hear from someone exactly as close to the same diagnoses, place of primary, depth of primary, stage and it is impossible…we are all different yet dealing with the same monster.
-
- February 29, 2012 at 2:09 am
Janner,
Thank you for being that person who cares to come back and share and be there as inspiration! it's so so very needed. My good friend was diagnosed stage 1 as well at basically the same time, only she also has Krohn's disease and has to take immunosuppresant drugs. I can't even imagine battling both and dealing with something actually working against you specifically. You are right about having the same feelings at earlier stages…but maybe theres that something in us that just wants to hear from someone exactly as close to the same diagnoses, place of primary, depth of primary, stage and it is impossible…we are all different yet dealing with the same monster.
-
- February 29, 2012 at 2:09 am
Janner,
Thank you for being that person who cares to come back and share and be there as inspiration! it's so so very needed. My good friend was diagnosed stage 1 as well at basically the same time, only she also has Krohn's disease and has to take immunosuppresant drugs. I can't even imagine battling both and dealing with something actually working against you specifically. You are right about having the same feelings at earlier stages…but maybe theres that something in us that just wants to hear from someone exactly as close to the same diagnoses, place of primary, depth of primary, stage and it is impossible…we are all different yet dealing with the same monster.
-
- February 29, 2012 at 2:09 am
Janner,
Thank you for being that person who cares to come back and share and be there as inspiration! it's so so very needed. My good friend was diagnosed stage 1 as well at basically the same time, only she also has Krohn's disease and has to take immunosuppresant drugs. I can't even imagine battling both and dealing with something actually working against you specifically. You are right about having the same feelings at earlier stages…but maybe theres that something in us that just wants to hear from someone exactly as close to the same diagnoses, place of primary, depth of primary, stage and it is impossible…we are all different yet dealing with the same monster.
-
- February 28, 2012 at 9:23 pm
But your questions don't just apply to stage 3A. They basically apply to anyone who is NED. I had a primary on my back 10 years ago (and 1 on each leg). I'm stage IB. But why would the question of spread and/or diet and whatever not apply to me?
I know many stage 3a who have moved on over the years. (I've been on this site over 10 years). Why stay here when you are NED and could be out living? You will mostly find the "exceptions" and the people actively fighting disease – or the newly diagnosed here. It's just the nature of the beast. Really, why should I as a stage IB (NED 10 years from my last primary) stick around here? I do it to help the newbies, but I am not here for myself anymore. When it comes to being NED, a stage I, II or III are all in the same position once time moves on. Some may have a higher chance at coming back here, but living life while you're NED is definitely the way to think!
Best wishes,
Janner
-
- February 28, 2012 at 9:23 pm
But your questions don't just apply to stage 3A. They basically apply to anyone who is NED. I had a primary on my back 10 years ago (and 1 on each leg). I'm stage IB. But why would the question of spread and/or diet and whatever not apply to me?
I know many stage 3a who have moved on over the years. (I've been on this site over 10 years). Why stay here when you are NED and could be out living? You will mostly find the "exceptions" and the people actively fighting disease – or the newly diagnosed here. It's just the nature of the beast. Really, why should I as a stage IB (NED 10 years from my last primary) stick around here? I do it to help the newbies, but I am not here for myself anymore. When it comes to being NED, a stage I, II or III are all in the same position once time moves on. Some may have a higher chance at coming back here, but living life while you're NED is definitely the way to think!
Best wishes,
Janner
-
- February 29, 2012 at 12:10 am
Two more things:
1. My primary was on my trunk. On the waist line to be specific. No one has said it was any higher risk and I have seen to very well respected melanoma specialists. I have read that melanoma on the head is higher risk but not on the trunk.
2. You ask about diet and supplements. My personal opinion is that nothing replaces a well balanced diet. Period. End of discussion. OK, not quite end of discussion, if you do a search you'll find a lot of opinions. Some people avoid red meat, some avoid sugar. Others add lots of supplements. I will confess to adding Vitamin D, Turmeric and Vitamin c to my diet. That and trying to eat a more balanced diet. I urge strongly anyone considering supplements/vitamins to research what they are taking. Many, if not all, have side effects and/or interactions. For example: Vit. E and Fish Oil are Blood Thinners. If you are already on asperin therapy you might want to avoid these. I found Sloan Kettering has a wonderful site for researching all of this.
Another note: as you come up with specific questions you may want to put them in separate threads so they don't get lost.
Mary
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- February 29, 2012 at 2:25 am
Mary,
I had specifically asked my oncologist if there were specific places that had a worse prognosis…He said the head and neck area… My surgeon had said that because of it being midline on my back (if you draw around from your bellybutton that's where it was) she said since it traveled up to the lower axilla (deep side next to breast) that there are a lot of organs passed on the way…That scared me…both her and the oncologist said that it was very very rare for my sentinal node found positive to be on the other side (like if you draw a line down the middle of you and it crosses the line)…That scared me too. So I did research…why was I such a rare case…then I found the following on both issues
http://archsurg.ama-assn.org/cgi/reprint/134/2/148.pdf
Background: The prognosis of melanoma is correlated
to the stage of the primary lesion. Tumor site has
also been implicated, with locations such as the trunk
carrying a worse prognosis than others (such as limbs).
and this one showing that the area it was found was a hot spot to cross the line and have multiple Sentinal Lymph Node locations.
so here are two examples of why I was looking for other patients in my same stage and primary location…just to compare some issues I have had trouble with or been confused on…and looking for experiences with the same issues…see, would a stage 4 patient want to deal with that now or would a stage 1 or 2 patient have looked into the lymphatic issue… I don't know…
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- March 3, 2012 at 2:01 am
Hi Miss Jenn..wanted to say hi and tell you that my husband is stage 3a..he had 1.3 breslow midway on his back which I discovered over 2 years ago. He then had a sentinel node biopsy which found one or two melanoma cells …this is called sub-micrometastsis. I am sadly an expert on this! My husband is in perfect health. After 2 years I have finally stopped obsessing over melanoma and don’t come to the boards very often. I loved seeing this post and all of the info and support you have gotten. Please see my blog and get in touch! Take care, Emily -
- March 3, 2012 at 2:01 am
Hi Miss Jenn..wanted to say hi and tell you that my husband is stage 3a..he had 1.3 breslow midway on his back which I discovered over 2 years ago. He then had a sentinel node biopsy which found one or two melanoma cells …this is called sub-micrometastsis. I am sadly an expert on this! My husband is in perfect health. After 2 years I have finally stopped obsessing over melanoma and don’t come to the boards very often. I loved seeing this post and all of the info and support you have gotten. Please see my blog and get in touch! Take care, Emily -
- March 3, 2012 at 2:01 am
Hi Miss Jenn..wanted to say hi and tell you that my husband is stage 3a..he had 1.3 breslow midway on his back which I discovered over 2 years ago. He then had a sentinel node biopsy which found one or two melanoma cells …this is called sub-micrometastsis. I am sadly an expert on this! My husband is in perfect health. After 2 years I have finally stopped obsessing over melanoma and don’t come to the boards very often. I loved seeing this post and all of the info and support you have gotten. Please see my blog and get in touch! Take care, Emily -
- February 29, 2012 at 2:25 am
Mary,
I had specifically asked my oncologist if there were specific places that had a worse prognosis…He said the head and neck area… My surgeon had said that because of it being midline on my back (if you draw around from your bellybutton that's where it was) she said since it traveled up to the lower axilla (deep side next to breast) that there are a lot of organs passed on the way…That scared me…both her and the oncologist said that it was very very rare for my sentinal node found positive to be on the other side (like if you draw a line down the middle of you and it crosses the line)…That scared me too. So I did research…why was I such a rare case…then I found the following on both issues
http://archsurg.ama-assn.org/cgi/reprint/134/2/148.pdf
Background: The prognosis of melanoma is correlated
to the stage of the primary lesion. Tumor site has
also been implicated, with locations such as the trunk
carrying a worse prognosis than others (such as limbs).
and this one showing that the area it was found was a hot spot to cross the line and have multiple Sentinal Lymph Node locations.
so here are two examples of why I was looking for other patients in my same stage and primary location…just to compare some issues I have had trouble with or been confused on…and looking for experiences with the same issues…see, would a stage 4 patient want to deal with that now or would a stage 1 or 2 patient have looked into the lymphatic issue… I don't know…
-
- February 29, 2012 at 2:25 am
Mary,
I had specifically asked my oncologist if there were specific places that had a worse prognosis…He said the head and neck area… My surgeon had said that because of it being midline on my back (if you draw around from your bellybutton that's where it was) she said since it traveled up to the lower axilla (deep side next to breast) that there are a lot of organs passed on the way…That scared me…both her and the oncologist said that it was very very rare for my sentinal node found positive to be on the other side (like if you draw a line down the middle of you and it crosses the line)…That scared me too. So I did research…why was I such a rare case…then I found the following on both issues
http://archsurg.ama-assn.org/cgi/reprint/134/2/148.pdf
Background: The prognosis of melanoma is correlated
to the stage of the primary lesion. Tumor site has
also been implicated, with locations such as the trunk
carrying a worse prognosis than others (such as limbs).
and this one showing that the area it was found was a hot spot to cross the line and have multiple Sentinal Lymph Node locations.
so here are two examples of why I was looking for other patients in my same stage and primary location…just to compare some issues I have had trouble with or been confused on…and looking for experiences with the same issues…see, would a stage 4 patient want to deal with that now or would a stage 1 or 2 patient have looked into the lymphatic issue… I don't know…
-
- February 29, 2012 at 12:10 am
Two more things:
1. My primary was on my trunk. On the waist line to be specific. No one has said it was any higher risk and I have seen to very well respected melanoma specialists. I have read that melanoma on the head is higher risk but not on the trunk.
2. You ask about diet and supplements. My personal opinion is that nothing replaces a well balanced diet. Period. End of discussion. OK, not quite end of discussion, if you do a search you'll find a lot of opinions. Some people avoid red meat, some avoid sugar. Others add lots of supplements. I will confess to adding Vitamin D, Turmeric and Vitamin c to my diet. That and trying to eat a more balanced diet. I urge strongly anyone considering supplements/vitamins to research what they are taking. Many, if not all, have side effects and/or interactions. For example: Vit. E and Fish Oil are Blood Thinners. If you are already on asperin therapy you might want to avoid these. I found Sloan Kettering has a wonderful site for researching all of this.
Another note: as you come up with specific questions you may want to put them in separate threads so they don't get lost.
Mary
-
- February 29, 2012 at 12:10 am
Two more things:
1. My primary was on my trunk. On the waist line to be specific. No one has said it was any higher risk and I have seen to very well respected melanoma specialists. I have read that melanoma on the head is higher risk but not on the trunk.
2. You ask about diet and supplements. My personal opinion is that nothing replaces a well balanced diet. Period. End of discussion. OK, not quite end of discussion, if you do a search you'll find a lot of opinions. Some people avoid red meat, some avoid sugar. Others add lots of supplements. I will confess to adding Vitamin D, Turmeric and Vitamin c to my diet. That and trying to eat a more balanced diet. I urge strongly anyone considering supplements/vitamins to research what they are taking. Many, if not all, have side effects and/or interactions. For example: Vit. E and Fish Oil are Blood Thinners. If you are already on asperin therapy you might want to avoid these. I found Sloan Kettering has a wonderful site for researching all of this.
Another note: as you come up with specific questions you may want to put them in separate threads so they don't get lost.
Mary
-
- February 29, 2012 at 1:22 am
Miss Jean
I started with stage 1a almost 3 years ago, with the removal of a mole that KEPT ICHING, My family dr. did not seem to worry about it because it looked normal. But another dr. that was removing a cyst from my voice box removed it while I was in surgery and found the milanoma. I went 1 1/2 years until I found a knot in my neck, Again my family Dr. didnt seem worried until 6 months later when I could barely use my arm and went to quick care and they informed me that the cancer was back. I had surger to remove the tumor and 42 lympnodes only 1 tested positive. I went into the leukine treatment for 5 months and finally found a NEW family dr. that just by the grace of God did a CT scan thinking I had kidney stones and found the nodules on my lung. They are small but still quite a few of them. That moved me to stage IV. I am currently taking the IPPI treatment which is going very good. But still in the back of my mind I wonder, what is next. But I descided that I am going to do every thing I can do to fight this cancer and let God worry about the rest. A positive attatude is what we have to keep. God bless you Miss Jean and I hope you find the answers to your questions , But remember just because this treatment didnt work for that person, doesnt mean it wont work for me or someone else.
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- February 29, 2012 at 2:35 am
Elaine,
This is exactly why I don't always trust everything the doctors say. So many cases where the doctor didn't take things seriously or didn't think something was wrong or a big deal. I have a personal story about my mom who's gallbladder was removed without need that has kept me for years on my toes about researching everything I hear from a doctor. I have deep respect for doctors, don't get me wrong, and thank Heaven! my dermatologist decided that even with a primary of <1 mm I needed the Sentinal Node Biopsy, which I have to ask if all doctors would have done… but everything in our body is serious to our living…and different than another case. I want to hug everyone of us that are in this…and thank you for sharing your experience.
-
- February 29, 2012 at 2:35 am
Elaine,
This is exactly why I don't always trust everything the doctors say. So many cases where the doctor didn't take things seriously or didn't think something was wrong or a big deal. I have a personal story about my mom who's gallbladder was removed without need that has kept me for years on my toes about researching everything I hear from a doctor. I have deep respect for doctors, don't get me wrong, and thank Heaven! my dermatologist decided that even with a primary of <1 mm I needed the Sentinal Node Biopsy, which I have to ask if all doctors would have done… but everything in our body is serious to our living…and different than another case. I want to hug everyone of us that are in this…and thank you for sharing your experience.
-
- February 29, 2012 at 2:35 am
Elaine,
This is exactly why I don't always trust everything the doctors say. So many cases where the doctor didn't take things seriously or didn't think something was wrong or a big deal. I have a personal story about my mom who's gallbladder was removed without need that has kept me for years on my toes about researching everything I hear from a doctor. I have deep respect for doctors, don't get me wrong, and thank Heaven! my dermatologist decided that even with a primary of <1 mm I needed the Sentinal Node Biopsy, which I have to ask if all doctors would have done… but everything in our body is serious to our living…and different than another case. I want to hug everyone of us that are in this…and thank you for sharing your experience.
-
- February 29, 2012 at 1:22 am
Miss Jean
I started with stage 1a almost 3 years ago, with the removal of a mole that KEPT ICHING, My family dr. did not seem to worry about it because it looked normal. But another dr. that was removing a cyst from my voice box removed it while I was in surgery and found the milanoma. I went 1 1/2 years until I found a knot in my neck, Again my family Dr. didnt seem worried until 6 months later when I could barely use my arm and went to quick care and they informed me that the cancer was back. I had surger to remove the tumor and 42 lympnodes only 1 tested positive. I went into the leukine treatment for 5 months and finally found a NEW family dr. that just by the grace of God did a CT scan thinking I had kidney stones and found the nodules on my lung. They are small but still quite a few of them. That moved me to stage IV. I am currently taking the IPPI treatment which is going very good. But still in the back of my mind I wonder, what is next. But I descided that I am going to do every thing I can do to fight this cancer and let God worry about the rest. A positive attatude is what we have to keep. God bless you Miss Jean and I hope you find the answers to your questions , But remember just because this treatment didnt work for that person, doesnt mean it wont work for me or someone else.
-
- February 29, 2012 at 1:22 am
Miss Jean
I started with stage 1a almost 3 years ago, with the removal of a mole that KEPT ICHING, My family dr. did not seem to worry about it because it looked normal. But another dr. that was removing a cyst from my voice box removed it while I was in surgery and found the milanoma. I went 1 1/2 years until I found a knot in my neck, Again my family Dr. didnt seem worried until 6 months later when I could barely use my arm and went to quick care and they informed me that the cancer was back. I had surger to remove the tumor and 42 lympnodes only 1 tested positive. I went into the leukine treatment for 5 months and finally found a NEW family dr. that just by the grace of God did a CT scan thinking I had kidney stones and found the nodules on my lung. They are small but still quite a few of them. That moved me to stage IV. I am currently taking the IPPI treatment which is going very good. But still in the back of my mind I wonder, what is next. But I descided that I am going to do every thing I can do to fight this cancer and let God worry about the rest. A positive attatude is what we have to keep. God bless you Miss Jean and I hope you find the answers to your questions , But remember just because this treatment didnt work for that person, doesnt mean it wont work for me or someone else.
-
- February 28, 2012 at 9:08 pm
Hi Elaine,
I know…we are so all in this cancer together at all stages…and I get so much from everyone… it's just there are those specifics to a stage that I feel so bad throwing out there to others dealing with such heavier things to deal with daily, like their current treatments. Like right now, my concern is should I worry about my diet…should I be taking tons and tons of vitamins, is there anyone who's primary was on their back and how they feel when they say the prognosis is worse on the trunk… what their experiences are and knowledge of others with a primary there… are they in stage 4 now? so many stage specific questions…
-
- February 28, 2012 at 9:08 pm
Hi Elaine,
I know…we are so all in this cancer together at all stages…and I get so much from everyone… it's just there are those specifics to a stage that I feel so bad throwing out there to others dealing with such heavier things to deal with daily, like their current treatments. Like right now, my concern is should I worry about my diet…should I be taking tons and tons of vitamins, is there anyone who's primary was on their back and how they feel when they say the prognosis is worse on the trunk… what their experiences are and knowledge of others with a primary there… are they in stage 4 now? so many stage specific questions…
-
- February 28, 2012 at 8:29 pm
Miss Jean
I think all of us on this board understand what you are going through. We are all scared and do not know what we face tomorrow. I hope you get the advice and support that you need. God Bless you all!
-
- February 28, 2012 at 8:29 pm
Miss Jean
I think all of us on this board understand what you are going through. We are all scared and do not know what we face tomorrow. I hope you get the advice and support that you need. God Bless you all!
-
- February 28, 2012 at 9:28 pm
Jenn,
Everyone on the board goes through the morning process when we loose one of our own. That again is why many people decide to move on and just live their lives. Then there are people like Janner who just keep giving back. If you have not visited her web site, please do so there is lots of good information there.
I read your profile and I am amazed, you also mentioned your mole itching. This seems to be a common thread. That is the ONLY reason I had mine removed. The mole other wise looked perfectly normal and it was over 3mm deep. I asked my Onc why that is not listed as a symptom and he said because it is not common enough. Boy, I'd really have to disagree with that!
The other interesting thing in your profile is that you are a financial person like I was before I retired. That means you look at the statistics. I did that…..didn't like what I saw. But after following the battles here (wins and losses) I realized there was no such thing as a statistic. You can be a 1a and go to stage 4, you can be stage 4 and be NED. So I decided that I was going with attitude and as good of an immune system as I could. Of course my regular follow-ups and sun safety….blah, blah…
Mary
Stage 3
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- February 28, 2012 at 9:28 pm
Jenn,
Everyone on the board goes through the morning process when we loose one of our own. That again is why many people decide to move on and just live their lives. Then there are people like Janner who just keep giving back. If you have not visited her web site, please do so there is lots of good information there.
I read your profile and I am amazed, you also mentioned your mole itching. This seems to be a common thread. That is the ONLY reason I had mine removed. The mole other wise looked perfectly normal and it was over 3mm deep. I asked my Onc why that is not listed as a symptom and he said because it is not common enough. Boy, I'd really have to disagree with that!
The other interesting thing in your profile is that you are a financial person like I was before I retired. That means you look at the statistics. I did that…..didn't like what I saw. But after following the battles here (wins and losses) I realized there was no such thing as a statistic. You can be a 1a and go to stage 4, you can be stage 4 and be NED. So I decided that I was going with attitude and as good of an immune system as I could. Of course my regular follow-ups and sun safety….blah, blah…
Mary
Stage 3
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- February 28, 2012 at 9:28 pm
Jenn,
Everyone on the board goes through the morning process when we loose one of our own. That again is why many people decide to move on and just live their lives. Then there are people like Janner who just keep giving back. If you have not visited her web site, please do so there is lots of good information there.
I read your profile and I am amazed, you also mentioned your mole itching. This seems to be a common thread. That is the ONLY reason I had mine removed. The mole other wise looked perfectly normal and it was over 3mm deep. I asked my Onc why that is not listed as a symptom and he said because it is not common enough. Boy, I'd really have to disagree with that!
The other interesting thing in your profile is that you are a financial person like I was before I retired. That means you look at the statistics. I did that…..didn't like what I saw. But after following the battles here (wins and losses) I realized there was no such thing as a statistic. You can be a 1a and go to stage 4, you can be stage 4 and be NED. So I decided that I was going with attitude and as good of an immune system as I could. Of course my regular follow-ups and sun safety….blah, blah…
Mary
Stage 3
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- February 28, 2012 at 8:12 pm
I really hope that is the case…with many many living in this stage for the rest of their lives… I will type 3A in the search and try and follow someone and then all of a sudden they are deceased… I can't tell you how many times this has happened… Amy Busby was my latest… I started reading her posts…so alive and helpful…then all of a sudden I stumbled across a post from her sister that she had passed… each one I mourn like they were my dear friend… so full of life and taken to this horrible horrible thing… then I process that we are all terminal and live life for today… it's such a cycle… it's such a weird stage at 3A too… I'm not ready for all these new terms I hear from stage 4 yet know I need to be prepared. Everything is an abbreviation…so many treatments…and yet feeling as if stage 3A is standing at the tip of a cliff awaiting it all… I don't want to be Debbie Downer either… but dang, this is a LOT to acknowledge after planning a whole lifetime… if I heard a ton of good stories I would attach myself to them but I either don't see them or see them for a bit followed up by bad news…sooooo, I suppose that is why I am reaching out to other 3A'ers… HELP… I want to find some good endings of long survival…or just someone sharing they feel like I do or what helps them…and lot's of them!!! I don't want people with the good stories to disappear ;( I think we all need them?
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- February 28, 2012 at 8:12 pm
I really hope that is the case…with many many living in this stage for the rest of their lives… I will type 3A in the search and try and follow someone and then all of a sudden they are deceased… I can't tell you how many times this has happened… Amy Busby was my latest… I started reading her posts…so alive and helpful…then all of a sudden I stumbled across a post from her sister that she had passed… each one I mourn like they were my dear friend… so full of life and taken to this horrible horrible thing… then I process that we are all terminal and live life for today… it's such a cycle… it's such a weird stage at 3A too… I'm not ready for all these new terms I hear from stage 4 yet know I need to be prepared. Everything is an abbreviation…so many treatments…and yet feeling as if stage 3A is standing at the tip of a cliff awaiting it all… I don't want to be Debbie Downer either… but dang, this is a LOT to acknowledge after planning a whole lifetime… if I heard a ton of good stories I would attach myself to them but I either don't see them or see them for a bit followed up by bad news…sooooo, I suppose that is why I am reaching out to other 3A'ers… HELP… I want to find some good endings of long survival…or just someone sharing they feel like I do or what helps them…and lot's of them!!! I don't want people with the good stories to disappear ;( I think we all need them?
-
- February 28, 2012 at 9:23 pm
Hi,
My husband was Stage III for a short period of time and is now Stage IV. He also chose not to do the interferon.
He is happy with his decision and is now doing a clinical trial. If you would like to read more about him click on his name and you can see his profile.
Like you he and I were very frightened. All the worries never really leave you just wait and see how things go and how quickly you progress. Each individual is different especially with this disease. Progressions are all different as body chemistry is different. I hope that you remain III A for a long time and I understand you wanting to find others in the same shoes as you.
No question is to silly to ask as everyone here is willing to help no matter what stage you are. To find a melanoma specialist is a good idea. Also if you want help with any technical questions then it is a good idea to have your pathology report on hand so you can refer to it when someones wants to know a particular thing on it to help inform you or to fill in your profile with some of this information is also a good idea.
The best of luck to you and I hope you have success with any treatments you choose in the future or better yet never progress to need any.
Judy (loving wife and caregiver of Gene Stage IV)
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- February 28, 2012 at 9:23 pm
Hi,
My husband was Stage III for a short period of time and is now Stage IV. He also chose not to do the interferon.
He is happy with his decision and is now doing a clinical trial. If you would like to read more about him click on his name and you can see his profile.
Like you he and I were very frightened. All the worries never really leave you just wait and see how things go and how quickly you progress. Each individual is different especially with this disease. Progressions are all different as body chemistry is different. I hope that you remain III A for a long time and I understand you wanting to find others in the same shoes as you.
No question is to silly to ask as everyone here is willing to help no matter what stage you are. To find a melanoma specialist is a good idea. Also if you want help with any technical questions then it is a good idea to have your pathology report on hand so you can refer to it when someones wants to know a particular thing on it to help inform you or to fill in your profile with some of this information is also a good idea.
The best of luck to you and I hope you have success with any treatments you choose in the future or better yet never progress to need any.
Judy (loving wife and caregiver of Gene Stage IV)
-
- February 28, 2012 at 9:23 pm
Hi,
My husband was Stage III for a short period of time and is now Stage IV. He also chose not to do the interferon.
He is happy with his decision and is now doing a clinical trial. If you would like to read more about him click on his name and you can see his profile.
Like you he and I were very frightened. All the worries never really leave you just wait and see how things go and how quickly you progress. Each individual is different especially with this disease. Progressions are all different as body chemistry is different. I hope that you remain III A for a long time and I understand you wanting to find others in the same shoes as you.
No question is to silly to ask as everyone here is willing to help no matter what stage you are. To find a melanoma specialist is a good idea. Also if you want help with any technical questions then it is a good idea to have your pathology report on hand so you can refer to it when someones wants to know a particular thing on it to help inform you or to fill in your profile with some of this information is also a good idea.
The best of luck to you and I hope you have success with any treatments you choose in the future or better yet never progress to need any.
Judy (loving wife and caregiver of Gene Stage IV)
-
- February 28, 2012 at 10:27 pm
Hi,
You've probably seen my posts if you've been searching for stage iiia survivors. My husband was diagnosed stage iiia 10 years ago at age 26. He had a WLE and all the lymph nodes taken from his right arm basin – the original mel was 1.3mm on his right tricep. We were literally newlyweds, having just married 2 weeks before he was diagnosed…
He would never come here to post – he moved on from the diagnosis pretty much as soon as he healed from the surgery. I,however, am always waiting for the other shoe to drop – it's in my nature! It's in his nature to be confident in his choices and move forward. He chose no interventions after surgery and has remained NED for the past 10 years. I know he views his cancer as a defining moment in his life – changing his career path from farming to teaching, and instilling in him the idea that each day is a gift – he lives this way as much as anyone can. He still gets anxious at scan time, but never dwells. I think his attitude has been amazing since the first day he was diagnosed.
I've always worried that stress would cause a recurrance. His oncologist always asks about stress in his life, considering mental health a huge aspect of a strong immune system. We've had a very turbulant and stressful 10 years, with the death of our son, multiple miscarriages, and the premature birth of our only living daughter among the regular stresses of finding our way in life. Cancer has just been part of that tapestry, I suppose…
Best to you,
Wendy
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- February 28, 2012 at 10:27 pm
Hi,
You've probably seen my posts if you've been searching for stage iiia survivors. My husband was diagnosed stage iiia 10 years ago at age 26. He had a WLE and all the lymph nodes taken from his right arm basin – the original mel was 1.3mm on his right tricep. We were literally newlyweds, having just married 2 weeks before he was diagnosed…
He would never come here to post – he moved on from the diagnosis pretty much as soon as he healed from the surgery. I,however, am always waiting for the other shoe to drop – it's in my nature! It's in his nature to be confident in his choices and move forward. He chose no interventions after surgery and has remained NED for the past 10 years. I know he views his cancer as a defining moment in his life – changing his career path from farming to teaching, and instilling in him the idea that each day is a gift – he lives this way as much as anyone can. He still gets anxious at scan time, but never dwells. I think his attitude has been amazing since the first day he was diagnosed.
I've always worried that stress would cause a recurrance. His oncologist always asks about stress in his life, considering mental health a huge aspect of a strong immune system. We've had a very turbulant and stressful 10 years, with the death of our son, multiple miscarriages, and the premature birth of our only living daughter among the regular stresses of finding our way in life. Cancer has just been part of that tapestry, I suppose…
Best to you,
Wendy
-
- February 28, 2012 at 10:27 pm
Hi,
You've probably seen my posts if you've been searching for stage iiia survivors. My husband was diagnosed stage iiia 10 years ago at age 26. He had a WLE and all the lymph nodes taken from his right arm basin – the original mel was 1.3mm on his right tricep. We were literally newlyweds, having just married 2 weeks before he was diagnosed…
He would never come here to post – he moved on from the diagnosis pretty much as soon as he healed from the surgery. I,however, am always waiting for the other shoe to drop – it's in my nature! It's in his nature to be confident in his choices and move forward. He chose no interventions after surgery and has remained NED for the past 10 years. I know he views his cancer as a defining moment in his life – changing his career path from farming to teaching, and instilling in him the idea that each day is a gift – he lives this way as much as anyone can. He still gets anxious at scan time, but never dwells. I think his attitude has been amazing since the first day he was diagnosed.
I've always worried that stress would cause a recurrance. His oncologist always asks about stress in his life, considering mental health a huge aspect of a strong immune system. We've had a very turbulant and stressful 10 years, with the death of our son, multiple miscarriages, and the premature birth of our only living daughter among the regular stresses of finding our way in life. Cancer has just been part of that tapestry, I suppose…
Best to you,
Wendy
-
- February 28, 2012 at 10:46 pm
Hello,
My melanoma was first dianosed in June 2007on my left leg, and that August had my SLN Biopsy (one positive micro-met). In September I had the rest of my left groin lymph nodes removed (all negative!) So I am Stage 3A.
My Onc Dr. suggested the watch and wait approach, and I just had my 4.5 year checkup today. All clear so far! Very minimal lymphodema (you can see where my regular sock ends and sligh puffines begins on my lower leg) My 5 year aniversay will be this September and will move from bi-annual to annual checkups.
My 5 year anniversary seemed like a magic number to achieve, but in September I will just move the goal to 10 years and keep counting.
What kind of questions can we help you with?
Stay Positive!
Mike from Richmond.
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- February 29, 2012 at 3:35 am
Mike,
ahhhhh Yes…so happy you can celebrate another NED outcome… a 5 year is something I want to dream of…
question, do you remember the amount of micrometasis found in your sentinal… there is a study in the Oxford Journal that stated that actually patients with micrometasis of < .1mm should be treated as stage 1 ? as far as survival statistics… I hold on to that hope a bit as I was close, although I know it can quickly change anyways…
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- February 29, 2012 at 4:51 pm
Hello Jenn,
Interesting. I thought it was either Micro or Macro. I did not know that there was a Ultra-Micro option as well.
When I first had my SLN biopsy, I was told that I had one positive Lymph node. I did not even know about the difference between Micro and Macro. But like all of us, I studied all of the info that I could find, and during my next visit asked my Onc which mine was, and found out that it was Micro.
I wish I had know about the third possibility before my appointment yesterday. The actual size may be in the pile of medical and insurance paperwork. I'll dig through it and let you know.
Thanks for the info!
Mike from Richmond.
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- February 29, 2012 at 6:03 pm
Mike,
Here is the link to the abstract of the study… My oncologist never discussed anything like this… but, worth thinking about if looking at going in for the CLND…
http://annonc.oxfordjournals.org/content/early/2006/09/12/annonc.mdl176
my two areas in the SNL positive were at .1 and .2… they say to take the higher of the two if mulitiple areas found, but still is so close… I never heard the term "ultra micro" but well, seems a bit fitting?
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- February 29, 2012 at 6:03 pm
Mike,
Here is the link to the abstract of the study… My oncologist never discussed anything like this… but, worth thinking about if looking at going in for the CLND…
http://annonc.oxfordjournals.org/content/early/2006/09/12/annonc.mdl176
my two areas in the SNL positive were at .1 and .2… they say to take the higher of the two if mulitiple areas found, but still is so close… I never heard the term "ultra micro" but well, seems a bit fitting?
-
- February 29, 2012 at 6:03 pm
Mike,
Here is the link to the abstract of the study… My oncologist never discussed anything like this… but, worth thinking about if looking at going in for the CLND…
http://annonc.oxfordjournals.org/content/early/2006/09/12/annonc.mdl176
my two areas in the SNL positive were at .1 and .2… they say to take the higher of the two if mulitiple areas found, but still is so close… I never heard the term "ultra micro" but well, seems a bit fitting?
-
- February 29, 2012 at 4:51 pm
Hello Jenn,
Interesting. I thought it was either Micro or Macro. I did not know that there was a Ultra-Micro option as well.
When I first had my SLN biopsy, I was told that I had one positive Lymph node. I did not even know about the difference between Micro and Macro. But like all of us, I studied all of the info that I could find, and during my next visit asked my Onc which mine was, and found out that it was Micro.
I wish I had know about the third possibility before my appointment yesterday. The actual size may be in the pile of medical and insurance paperwork. I'll dig through it and let you know.
Thanks for the info!
Mike from Richmond.
-
- February 29, 2012 at 4:51 pm
Hello Jenn,
Interesting. I thought it was either Micro or Macro. I did not know that there was a Ultra-Micro option as well.
When I first had my SLN biopsy, I was told that I had one positive Lymph node. I did not even know about the difference between Micro and Macro. But like all of us, I studied all of the info that I could find, and during my next visit asked my Onc which mine was, and found out that it was Micro.
I wish I had know about the third possibility before my appointment yesterday. The actual size may be in the pile of medical and insurance paperwork. I'll dig through it and let you know.
Thanks for the info!
Mike from Richmond.
-
- February 29, 2012 at 3:35 am
Mike,
ahhhhh Yes…so happy you can celebrate another NED outcome… a 5 year is something I want to dream of…
question, do you remember the amount of micrometasis found in your sentinal… there is a study in the Oxford Journal that stated that actually patients with micrometasis of < .1mm should be treated as stage 1 ? as far as survival statistics… I hold on to that hope a bit as I was close, although I know it can quickly change anyways…
-
- February 29, 2012 at 3:35 am
Mike,
ahhhhh Yes…so happy you can celebrate another NED outcome… a 5 year is something I want to dream of…
question, do you remember the amount of micrometasis found in your sentinal… there is a study in the Oxford Journal that stated that actually patients with micrometasis of < .1mm should be treated as stage 1 ? as far as survival statistics… I hold on to that hope a bit as I was close, although I know it can quickly change anyways…
-
- February 28, 2012 at 10:46 pm
Hello,
My melanoma was first dianosed in June 2007on my left leg, and that August had my SLN Biopsy (one positive micro-met). In September I had the rest of my left groin lymph nodes removed (all negative!) So I am Stage 3A.
My Onc Dr. suggested the watch and wait approach, and I just had my 4.5 year checkup today. All clear so far! Very minimal lymphodema (you can see where my regular sock ends and sligh puffines begins on my lower leg) My 5 year aniversay will be this September and will move from bi-annual to annual checkups.
My 5 year anniversary seemed like a magic number to achieve, but in September I will just move the goal to 10 years and keep counting.
What kind of questions can we help you with?
Stay Positive!
Mike from Richmond.
-
- February 28, 2012 at 10:46 pm
Hello,
My melanoma was first dianosed in June 2007on my left leg, and that August had my SLN Biopsy (one positive micro-met). In September I had the rest of my left groin lymph nodes removed (all negative!) So I am Stage 3A.
My Onc Dr. suggested the watch and wait approach, and I just had my 4.5 year checkup today. All clear so far! Very minimal lymphodema (you can see where my regular sock ends and sligh puffines begins on my lower leg) My 5 year aniversay will be this September and will move from bi-annual to annual checkups.
My 5 year anniversary seemed like a magic number to achieve, but in September I will just move the goal to 10 years and keep counting.
What kind of questions can we help you with?
Stay Positive!
Mike from Richmond.
-
- February 29, 2012 at 3:19 am
I know you are asking for 3A, but I couldn't help joining in. I was diagnosed in 1993 at age 39. Following surgery and lymph node removal, I was lucky to be NED for 10 1/2 years. Then I had a recurrence. I am Stage 3B. I have been 3B and NED again since 2004. I did not do Interferon. And I still stick around here. MPIP gave me information, support, and comfort at a time in my life when I was struggling. I never made close friends, never met anyone in person from this board – but felt a strong connection with people that I didn't have to pretend with. That helped me more than I can ever say. I have cried with these people, laughed with them and loved each person for who they are. I don't stay on here as much as I use to. Life does go on every day. But I will never stop being touched by all the stories. Good luck and remember…worry doesn't help tomorrow, it just takes away today. BethA 3/B
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- February 29, 2012 at 3:19 am
I know you are asking for 3A, but I couldn't help joining in. I was diagnosed in 1993 at age 39. Following surgery and lymph node removal, I was lucky to be NED for 10 1/2 years. Then I had a recurrence. I am Stage 3B. I have been 3B and NED again since 2004. I did not do Interferon. And I still stick around here. MPIP gave me information, support, and comfort at a time in my life when I was struggling. I never made close friends, never met anyone in person from this board – but felt a strong connection with people that I didn't have to pretend with. That helped me more than I can ever say. I have cried with these people, laughed with them and loved each person for who they are. I don't stay on here as much as I use to. Life does go on every day. But I will never stop being touched by all the stories. Good luck and remember…worry doesn't help tomorrow, it just takes away today. BethA 3/B
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- February 29, 2012 at 3:19 am
I know you are asking for 3A, but I couldn't help joining in. I was diagnosed in 1993 at age 39. Following surgery and lymph node removal, I was lucky to be NED for 10 1/2 years. Then I had a recurrence. I am Stage 3B. I have been 3B and NED again since 2004. I did not do Interferon. And I still stick around here. MPIP gave me information, support, and comfort at a time in my life when I was struggling. I never made close friends, never met anyone in person from this board – but felt a strong connection with people that I didn't have to pretend with. That helped me more than I can ever say. I have cried with these people, laughed with them and loved each person for who they are. I don't stay on here as much as I use to. Life does go on every day. But I will never stop being touched by all the stories. Good luck and remember…worry doesn't help tomorrow, it just takes away today. BethA 3/B
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- February 29, 2012 at 4:57 am
Hello My 3A friend.
I was diagnosed in Jan2011 – 1.02 with two micro cells found in one sentinal node. my doctor doesnt even like to call me '3a' however, I am. I am one of two people at my melanoma center that did not take ALL the lymph nodes after finding the few cells. Its a bit scary because everything is UNKNOWN. They have no idea what this is going to do to you. Where it i going to go. No one knows. You have to be comfortable with your decision. Yes, that is easier said than done, I have gone for second and third opinions myself. My final one was with a melanoma specialist in NYU. They were in agreement with my doctors in New Jersey. To this day, I would like to go for more opinions, just so MORE eyes are looking at me, my reports, etc. I also would like to know when new stuff turns up, new treatments, trials. I think the key here is to stay on top of things.
Truly I think that the mental anguish that we put ourselves through is worse than the sickness sometimes… I am living proof that there will never be rest….
I never had Interferon. I go for CT scans every six months. I go to dermatologist every three months. I see my melanoma oncologist every three months. So I go for my scans ( the second set of CT scans since the beginning of this ) long story short, they find a mass on my gallbladder. Follow up with an ultrasound. Yes, its a mass. Not promising that it is mel spread however it is a mass. So off to the abdominal surgical oncologist. We decide that it is coming out. Not a watch and wait. I have to sign off on " we are taking gall bladder, checking it while you are under..if its benign, all is good, we close you up. If its Melanoma, we close you up. If its gallbladder cancer, we have to take part of your liver and more, put an IV in your neck and obviously the surgery will be open and more extensive…" That all happened on Friday – Praise God, all is good. It was benign mass and life NOW goes on again. I pray for the strength to fight this disease as well as the mental fight which to me, is just as hard.
I am here on the site, I read, I put my comments in here and there, but nothing really to report – I think that is why we dont see our 3A's so much.
Keep informed and keep up with your follow ups! thats all we can really do right?
Happy thoughts…
Kathy 3A ( New Jersey )
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- February 29, 2012 at 5:07 am
did you see that I had just commented on your post before you sent this one? It was a response to Kelli… you are the closest person to my exact circumstances… soooooooooooooooo glad that your newest scare turned out with a better outcome than it looked! definitely definitely the mental anguish is OMG badddddddddd… Zoloft here I come… I need a break from it all right now.
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- February 29, 2012 at 5:13 am
yes I did ! i was looking to see if there was a way to chat instead of post a note. I have been in contact with Kelli as well. She is close to our situation as well. So strange how you read someone elses story and find yourself so close . My email is [email protected] if you want to email me directly. I also chose to not get all the nodes removed. that was my biggest decision to make. All that you read tells you YES you should, but all the doctors that I saw were against it. That is why I felt I needed to keep going, to keep asking…The whole Interferon is a questionable thing as well. All the doctors I saw were in agreement with no Interferon as well. And that is hard to swallow because you WANT to do something, right? Ugh, its so draining.
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- February 29, 2012 at 5:36 am
Yessssssss… in the same boat with both issues!!! My surgeon is a breast specialist…strange that it was positive deep axilla right next to breast…I ask omg do I have to have all my lymph nodes removed now? but she says, well Jennifer, I'm not going to remove your breast…we've taken enough in that area. But then so many I see it says the lymph nodes were all removed and clear… someone once described a similar situation saying "it's like the doctor says they need to immediately amputate your leg…after surgery he comes back and says , good news the tests came back negative" I don't know how to process all that. I already have bad nerve damage from the 9 they took…it feels like CLND already there… no nerve damage from the 4 they took at groin… but there's that fear that maybe she's wrong… my oncologist wanted me to talk to his surgeon at USC Norris Cancer Center… he seems to want to push for that and also the Interferon… I don't want to be sick… and cut my income in half with disability … not yet… you being in this same place see what I see… that was what I needed with this post… someone who sees as close to what I see for specific comparison with these specifics too… all are different… when I see a good report I look where the primary is and if it is on a limb I think, ohhhh but mine is on my trunk, I might not be so lucky… weird things like that … holding on to anything and everything in a strange new weird world of fear. did I say Zoloft here I come… well, I mean it!!! lol just by the length of all my posts you probably can see it's got my mind in overdrive… I will email you and hope to be in close contact with you… not to discount absolutely everyone here in all stages… I really need you all here…and once this calms down in me I hope to be more normal and hopeful and positive… just not there just yet…
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- March 1, 2012 at 8:27 pm
If you are in Los Angeles I would either get a referral to the John Wayne cancer center (Dr Farris is wonderful!!!!) or The Angeles Clinic (Dr Hamid) both are in Santa Monica. I've seen them both. I am suggesting this only if you are thinking about going somewhere else.
I read the two articles you posted and I saw nothing in them that particularly alarmed me. The first one really correlated location with depth of tumor. And depth is the primary indicator of severity. The second one was simply a push for a particular type of equipment, I hold no credence in that. I have found if you search long enough you can find whatever you want to find on the net so if you are looking to scare yourself to death keep searching. If not, stay on reputable sites like major hospitals that specialize in Melanoma, Melanoma International Foundation, American Cancer Society, etc.
Being informed is good. That's why alot of us are here. But you need to screen your information carefully. It is like using statistics. I can make numbers tell you any story you want, just tell me what answer your looking for. One individual story, a stage 1 going to stage 4 is not a statistic. It seems like we have a lot of them, that's because we are a support group.
I suggest you start informing yourself about the new and up coming treatments and all the advancements in melanoma. That way, in case you need it , you will be informed. You will also see how much hope there is.
Mary
Stage 3
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- March 1, 2012 at 8:27 pm
If you are in Los Angeles I would either get a referral to the John Wayne cancer center (Dr Farris is wonderful!!!!) or The Angeles Clinic (Dr Hamid) both are in Santa Monica. I've seen them both. I am suggesting this only if you are thinking about going somewhere else.
I read the two articles you posted and I saw nothing in them that particularly alarmed me. The first one really correlated location with depth of tumor. And depth is the primary indicator of severity. The second one was simply a push for a particular type of equipment, I hold no credence in that. I have found if you search long enough you can find whatever you want to find on the net so if you are looking to scare yourself to death keep searching. If not, stay on reputable sites like major hospitals that specialize in Melanoma, Melanoma International Foundation, American Cancer Society, etc.
Being informed is good. That's why alot of us are here. But you need to screen your information carefully. It is like using statistics. I can make numbers tell you any story you want, just tell me what answer your looking for. One individual story, a stage 1 going to stage 4 is not a statistic. It seems like we have a lot of them, that's because we are a support group.
I suggest you start informing yourself about the new and up coming treatments and all the advancements in melanoma. That way, in case you need it , you will be informed. You will also see how much hope there is.
Mary
Stage 3
-
- March 1, 2012 at 8:27 pm
If you are in Los Angeles I would either get a referral to the John Wayne cancer center (Dr Farris is wonderful!!!!) or The Angeles Clinic (Dr Hamid) both are in Santa Monica. I've seen them both. I am suggesting this only if you are thinking about going somewhere else.
I read the two articles you posted and I saw nothing in them that particularly alarmed me. The first one really correlated location with depth of tumor. And depth is the primary indicator of severity. The second one was simply a push for a particular type of equipment, I hold no credence in that. I have found if you search long enough you can find whatever you want to find on the net so if you are looking to scare yourself to death keep searching. If not, stay on reputable sites like major hospitals that specialize in Melanoma, Melanoma International Foundation, American Cancer Society, etc.
Being informed is good. That's why alot of us are here. But you need to screen your information carefully. It is like using statistics. I can make numbers tell you any story you want, just tell me what answer your looking for. One individual story, a stage 1 going to stage 4 is not a statistic. It seems like we have a lot of them, that's because we are a support group.
I suggest you start informing yourself about the new and up coming treatments and all the advancements in melanoma. That way, in case you need it , you will be informed. You will also see how much hope there is.
Mary
Stage 3
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- February 29, 2012 at 5:36 am
Yessssssss… in the same boat with both issues!!! My surgeon is a breast specialist…strange that it was positive deep axilla right next to breast…I ask omg do I have to have all my lymph nodes removed now? but she says, well Jennifer, I'm not going to remove your breast…we've taken enough in that area. But then so many I see it says the lymph nodes were all removed and clear… someone once described a similar situation saying "it's like the doctor says they need to immediately amputate your leg…after surgery he comes back and says , good news the tests came back negative" I don't know how to process all that. I already have bad nerve damage from the 9 they took…it feels like CLND already there… no nerve damage from the 4 they took at groin… but there's that fear that maybe she's wrong… my oncologist wanted me to talk to his surgeon at USC Norris Cancer Center… he seems to want to push for that and also the Interferon… I don't want to be sick… and cut my income in half with disability … not yet… you being in this same place see what I see… that was what I needed with this post… someone who sees as close to what I see for specific comparison with these specifics too… all are different… when I see a good report I look where the primary is and if it is on a limb I think, ohhhh but mine is on my trunk, I might not be so lucky… weird things like that … holding on to anything and everything in a strange new weird world of fear. did I say Zoloft here I come… well, I mean it!!! lol just by the length of all my posts you probably can see it's got my mind in overdrive… I will email you and hope to be in close contact with you… not to discount absolutely everyone here in all stages… I really need you all here…and once this calms down in me I hope to be more normal and hopeful and positive… just not there just yet…
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- February 29, 2012 at 5:36 am
Yessssssss… in the same boat with both issues!!! My surgeon is a breast specialist…strange that it was positive deep axilla right next to breast…I ask omg do I have to have all my lymph nodes removed now? but she says, well Jennifer, I'm not going to remove your breast…we've taken enough in that area. But then so many I see it says the lymph nodes were all removed and clear… someone once described a similar situation saying "it's like the doctor says they need to immediately amputate your leg…after surgery he comes back and says , good news the tests came back negative" I don't know how to process all that. I already have bad nerve damage from the 9 they took…it feels like CLND already there… no nerve damage from the 4 they took at groin… but there's that fear that maybe she's wrong… my oncologist wanted me to talk to his surgeon at USC Norris Cancer Center… he seems to want to push for that and also the Interferon… I don't want to be sick… and cut my income in half with disability … not yet… you being in this same place see what I see… that was what I needed with this post… someone who sees as close to what I see for specific comparison with these specifics too… all are different… when I see a good report I look where the primary is and if it is on a limb I think, ohhhh but mine is on my trunk, I might not be so lucky… weird things like that … holding on to anything and everything in a strange new weird world of fear. did I say Zoloft here I come… well, I mean it!!! lol just by the length of all my posts you probably can see it's got my mind in overdrive… I will email you and hope to be in close contact with you… not to discount absolutely everyone here in all stages… I really need you all here…and once this calms down in me I hope to be more normal and hopeful and positive… just not there just yet…
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- February 29, 2012 at 5:13 am
yes I did ! i was looking to see if there was a way to chat instead of post a note. I have been in contact with Kelli as well. She is close to our situation as well. So strange how you read someone elses story and find yourself so close . My email is [email protected] if you want to email me directly. I also chose to not get all the nodes removed. that was my biggest decision to make. All that you read tells you YES you should, but all the doctors that I saw were against it. That is why I felt I needed to keep going, to keep asking…The whole Interferon is a questionable thing as well. All the doctors I saw were in agreement with no Interferon as well. And that is hard to swallow because you WANT to do something, right? Ugh, its so draining.
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- February 29, 2012 at 5:13 am
yes I did ! i was looking to see if there was a way to chat instead of post a note. I have been in contact with Kelli as well. She is close to our situation as well. So strange how you read someone elses story and find yourself so close . My email is [email protected] if you want to email me directly. I also chose to not get all the nodes removed. that was my biggest decision to make. All that you read tells you YES you should, but all the doctors that I saw were against it. That is why I felt I needed to keep going, to keep asking…The whole Interferon is a questionable thing as well. All the doctors I saw were in agreement with no Interferon as well. And that is hard to swallow because you WANT to do something, right? Ugh, its so draining.
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- February 29, 2012 at 5:07 am
did you see that I had just commented on your post before you sent this one? It was a response to Kelli… you are the closest person to my exact circumstances… soooooooooooooooo glad that your newest scare turned out with a better outcome than it looked! definitely definitely the mental anguish is OMG badddddddddd… Zoloft here I come… I need a break from it all right now.
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- February 29, 2012 at 5:07 am
did you see that I had just commented on your post before you sent this one? It was a response to Kelli… you are the closest person to my exact circumstances… soooooooooooooooo glad that your newest scare turned out with a better outcome than it looked! definitely definitely the mental anguish is OMG badddddddddd… Zoloft here I come… I need a break from it all right now.
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- February 29, 2012 at 4:57 am
Hello My 3A friend.
I was diagnosed in Jan2011 – 1.02 with two micro cells found in one sentinal node. my doctor doesnt even like to call me '3a' however, I am. I am one of two people at my melanoma center that did not take ALL the lymph nodes after finding the few cells. Its a bit scary because everything is UNKNOWN. They have no idea what this is going to do to you. Where it i going to go. No one knows. You have to be comfortable with your decision. Yes, that is easier said than done, I have gone for second and third opinions myself. My final one was with a melanoma specialist in NYU. They were in agreement with my doctors in New Jersey. To this day, I would like to go for more opinions, just so MORE eyes are looking at me, my reports, etc. I also would like to know when new stuff turns up, new treatments, trials. I think the key here is to stay on top of things.
Truly I think that the mental anguish that we put ourselves through is worse than the sickness sometimes… I am living proof that there will never be rest….
I never had Interferon. I go for CT scans every six months. I go to dermatologist every three months. I see my melanoma oncologist every three months. So I go for my scans ( the second set of CT scans since the beginning of this ) long story short, they find a mass on my gallbladder. Follow up with an ultrasound. Yes, its a mass. Not promising that it is mel spread however it is a mass. So off to the abdominal surgical oncologist. We decide that it is coming out. Not a watch and wait. I have to sign off on " we are taking gall bladder, checking it while you are under..if its benign, all is good, we close you up. If its Melanoma, we close you up. If its gallbladder cancer, we have to take part of your liver and more, put an IV in your neck and obviously the surgery will be open and more extensive…" That all happened on Friday – Praise God, all is good. It was benign mass and life NOW goes on again. I pray for the strength to fight this disease as well as the mental fight which to me, is just as hard.
I am here on the site, I read, I put my comments in here and there, but nothing really to report – I think that is why we dont see our 3A's so much.
Keep informed and keep up with your follow ups! thats all we can really do right?
Happy thoughts…
Kathy 3A ( New Jersey )
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- February 29, 2012 at 4:57 am
Hello My 3A friend.
I was diagnosed in Jan2011 – 1.02 with two micro cells found in one sentinal node. my doctor doesnt even like to call me '3a' however, I am. I am one of two people at my melanoma center that did not take ALL the lymph nodes after finding the few cells. Its a bit scary because everything is UNKNOWN. They have no idea what this is going to do to you. Where it i going to go. No one knows. You have to be comfortable with your decision. Yes, that is easier said than done, I have gone for second and third opinions myself. My final one was with a melanoma specialist in NYU. They were in agreement with my doctors in New Jersey. To this day, I would like to go for more opinions, just so MORE eyes are looking at me, my reports, etc. I also would like to know when new stuff turns up, new treatments, trials. I think the key here is to stay on top of things.
Truly I think that the mental anguish that we put ourselves through is worse than the sickness sometimes… I am living proof that there will never be rest….
I never had Interferon. I go for CT scans every six months. I go to dermatologist every three months. I see my melanoma oncologist every three months. So I go for my scans ( the second set of CT scans since the beginning of this ) long story short, they find a mass on my gallbladder. Follow up with an ultrasound. Yes, its a mass. Not promising that it is mel spread however it is a mass. So off to the abdominal surgical oncologist. We decide that it is coming out. Not a watch and wait. I have to sign off on " we are taking gall bladder, checking it while you are under..if its benign, all is good, we close you up. If its Melanoma, we close you up. If its gallbladder cancer, we have to take part of your liver and more, put an IV in your neck and obviously the surgery will be open and more extensive…" That all happened on Friday – Praise God, all is good. It was benign mass and life NOW goes on again. I pray for the strength to fight this disease as well as the mental fight which to me, is just as hard.
I am here on the site, I read, I put my comments in here and there, but nothing really to report – I think that is why we dont see our 3A's so much.
Keep informed and keep up with your follow ups! thats all we can really do right?
Happy thoughts…
Kathy 3A ( New Jersey )
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- March 2, 2012 at 12:29 am
I was diagnosed stage III June 2010. I did do interferon just short of 1 year. Now I am going into my 6th month of NED after the treatment. I had scans last in Jan, 2012 and altrasound and was finally told I am NED. I am now trying to live life and trying not to worry daily of this coming back. I am one that keeps coming back to the board. It gives me encouragement as well as to keep in mind that I am not alone. God Bless!!
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- March 2, 2012 at 12:29 am
I was diagnosed stage III June 2010. I did do interferon just short of 1 year. Now I am going into my 6th month of NED after the treatment. I had scans last in Jan, 2012 and altrasound and was finally told I am NED. I am now trying to live life and trying not to worry daily of this coming back. I am one that keeps coming back to the board. It gives me encouragement as well as to keep in mind that I am not alone. God Bless!!
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- March 2, 2012 at 12:29 am
I was diagnosed stage III June 2010. I did do interferon just short of 1 year. Now I am going into my 6th month of NED after the treatment. I had scans last in Jan, 2012 and altrasound and was finally told I am NED. I am now trying to live life and trying not to worry daily of this coming back. I am one that keeps coming back to the board. It gives me encouragement as well as to keep in mind that I am not alone. God Bless!!
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- January 30, 2013 at 6:52 pm
Hi! My husband is stage IIIa since june 2012. Since October 2012 he did interferon pegylado. He is going to do the first control scan next February we are very nervous.
Interferon pegylado sucks, but is the only treatment for stage iiia, so he tries to love a normal life, but is hard.
you should try to be positive, there are many people who survive stage III and IV.
Kisses.
gaby
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- January 30, 2013 at 6:52 pm
Hi! My husband is stage IIIa since june 2012. Since October 2012 he did interferon pegylado. He is going to do the first control scan next February we are very nervous.
Interferon pegylado sucks, but is the only treatment for stage iiia, so he tries to love a normal life, but is hard.
you should try to be positive, there are many people who survive stage III and IV.
Kisses.
gaby
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- January 30, 2013 at 6:52 pm
Hi! My husband is stage IIIa since june 2012. Since October 2012 he did interferon pegylado. He is going to do the first control scan next February we are very nervous.
Interferon pegylado sucks, but is the only treatment for stage iiia, so he tries to love a normal life, but is hard.
you should try to be positive, there are many people who survive stage III and IV.
Kisses.
gaby
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- January 30, 2013 at 6:53 pm
Hi! My husband is stage IIIa since june 2012. Since October 2012 he did interferon pegylado. He is going to do the first control scan next February we are very nervous.
Interferon pegylado sucks, but is the only treatment for stage iiia, so he tries to love a normal life, but is hard.
you should try to be positive, there are many people who survive stage III and IV.
Kisses.
gaby
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- January 30, 2013 at 6:53 pm
Hi! My husband is stage IIIa since june 2012. Since October 2012 he did interferon pegylado. He is going to do the first control scan next February we are very nervous.
Interferon pegylado sucks, but is the only treatment for stage iiia, so he tries to love a normal life, but is hard.
you should try to be positive, there are many people who survive stage III and IV.
Kisses.
gaby
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- January 30, 2013 at 6:53 pm
Hi! My husband is stage IIIa since june 2012. Since October 2012 he did interferon pegylado. He is going to do the first control scan next February we are very nervous.
Interferon pegylado sucks, but is the only treatment for stage iiia, so he tries to love a normal life, but is hard.
you should try to be positive, there are many people who survive stage III and IV.
Kisses.
gaby
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- January 30, 2013 at 7:08 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:08 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:08 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:09 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:09 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:09 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:11 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:11 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:11 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:12 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:12 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:12 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:13 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:13 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- January 30, 2013 at 7:13 pm
I just saw this pop up from last year. How are all 3a friends doing? I am HAPPY to say I am still HERE, still 3a, still going strong and never felt better in my life. I lost weight, eat a better diet, wishing I could put more exercise in this life of mine ( baby steps, baby steps LOL) . I just reached my 2year mark this month. I hope this finds you all well and NED !!!!
Kathy from NJ 3A since January 2011
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- August 11, 2016 at 8:31 pm
LOOKING FOR RECENT REPLIES/UPDATES TO "LOOKING FOR OTHER STAGE 3A MEMBERS PLEASE TO SHARE THOUGHTS" OR NEW MEMBERS WITH STAGE 3A TO SHARE THOUGHTS.. My father has recently been diagnosed with stage 3A melanoma. The tumer was removed from his back, close to his right shoulder. He had one sentinel lymph node removed from his armpit, all clear. He had another one removed from his neck and they found two small areas with melanoma cancer cells. They are recommending no treatment at this time. In four months he will go back for an ultrasound to see if there are any changes in his lymph nodes. Honestly thought this recommendation was counterintuitive until I read some of these threads. However, I can't seem to find any updates or and other discussions after 2013.. please help. My dad is very healthy for his age (74); works with horses and is very physical daily. The doctors that I've met I think are very capable (John Hopkins Kimmel Cancer Center) but I can help but think, sit and wait…?! Anyone out there with recent information, thoughts, direction..would be greatly appreciated..
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- August 11, 2016 at 8:31 pm
LOOKING FOR RECENT REPLIES/UPDATES TO "LOOKING FOR OTHER STAGE 3A MEMBERS PLEASE TO SHARE THOUGHTS" OR NEW MEMBERS WITH STAGE 3A TO SHARE THOUGHTS.. My father has recently been diagnosed with stage 3A melanoma. The tumer was removed from his back, close to his right shoulder. He had one sentinel lymph node removed from his armpit, all clear. He had another one removed from his neck and they found two small areas with melanoma cancer cells. They are recommending no treatment at this time. In four months he will go back for an ultrasound to see if there are any changes in his lymph nodes. Honestly thought this recommendation was counterintuitive until I read some of these threads. However, I can't seem to find any updates or and other discussions after 2013.. please help. My dad is very healthy for his age (74); works with horses and is very physical daily. The doctors that I've met I think are very capable (John Hopkins Kimmel Cancer Center) but I can help but think, sit and wait…?! Anyone out there with recent information, thoughts, direction..would be greatly appreciated..
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- August 11, 2016 at 8:31 pm
LOOKING FOR RECENT REPLIES/UPDATES TO "LOOKING FOR OTHER STAGE 3A MEMBERS PLEASE TO SHARE THOUGHTS" OR NEW MEMBERS WITH STAGE 3A TO SHARE THOUGHTS.. My father has recently been diagnosed with stage 3A melanoma. The tumer was removed from his back, close to his right shoulder. He had one sentinel lymph node removed from his armpit, all clear. He had another one removed from his neck and they found two small areas with melanoma cancer cells. They are recommending no treatment at this time. In four months he will go back for an ultrasound to see if there are any changes in his lymph nodes. Honestly thought this recommendation was counterintuitive until I read some of these threads. However, I can't seem to find any updates or and other discussions after 2013.. please help. My dad is very healthy for his age (74); works with horses and is very physical daily. The doctors that I've met I think are very capable (John Hopkins Kimmel Cancer Center) but I can help but think, sit and wait…?! Anyone out there with recent information, thoughts, direction..would be greatly appreciated..
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