› Forums › General Melanoma Community › Newly diagnosed stage 3a
- This topic has 60 replies, 11 voices, and was last updated 9 years, 7 months ago by
Kim41.
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- June 3, 2015 at 2:06 am
I had a random mole check and 3 moles removed at the end of April, and than found out one of these (on my back) was melanoma. Have since had a wide excision surgery and sentinel node biopsy– and 1 of 3 sentinel nodes came back with 'a few melanoma cells' in it. No big tumors in the nodes. The excised tissue had 'a few melanoma cells' but otherwise the margins were clear. Then had a PET scan (negative) and a full axillary lymph node dissection (all 13 nodes removed were negative). Been told I am stage 3a. Waiting on the genetic testing. Meeting local Oncologist this week and then going to the big referral center in 2 weeks. The medication portion of this disease is overwhelming. I'm not sure what to expect or even ask for based on what I've read. I'm hoping the 2 doctors will recommend the same thing, and that I can get treatment locally if needed. Any advice? We have 2 kids under age 4 at home with us now, and our oldest son died less than 2 yrs ago from a congenital heart disorder while I was pregnant with my youngest. I cannot bear putting my family thru any more loss. I want to do everything I can to stay around for them! Thanks in advance for any advice….
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- June 3, 2015 at 2:57 am
So sorry for your loss and now this! Prayers are with you. Please make sure you see a melanoma specialist and even then get a second opinion. There continues to be great advances in treatments so try to stay positive, take care of yourself and accept help when offered. Wishing you all the best for you and your family.
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- June 3, 2015 at 2:57 am
So sorry for your loss and now this! Prayers are with you. Please make sure you see a melanoma specialist and even then get a second opinion. There continues to be great advances in treatments so try to stay positive, take care of yourself and accept help when offered. Wishing you all the best for you and your family.
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- June 3, 2015 at 2:57 am
So sorry for your loss and now this! Prayers are with you. Please make sure you see a melanoma specialist and even then get a second opinion. There continues to be great advances in treatments so try to stay positive, take care of yourself and accept help when offered. Wishing you all the best for you and your family.
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- June 3, 2015 at 11:41 am
If that's stage 3 then the best trial to my knowledge is the yervoy vs pd1 trial for stage 3 folks. Which big referral center are you going to? Also not only should you see a melanoma specialist but they should have a sense of urgency like a melanoma specialist should have.
Artie
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- June 3, 2015 at 1:38 pm
I'm going to be seen at the James Cancer Center at Ohio State University. Can you get these medications locally, or do you have to be part of a trial somewhere? My surgeon talked to me about Interferon, but she said the Oncologist would obviously know more about treatment options.
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- June 3, 2015 at 1:38 pm
I'm going to be seen at the James Cancer Center at Ohio State University. Can you get these medications locally, or do you have to be part of a trial somewhere? My surgeon talked to me about Interferon, but she said the Oncologist would obviously know more about treatment options.
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- June 3, 2015 at 6:09 pm
Yervoy and pd1 are available locally for stage 4 folks but only via trial for stage 3. You can see some recent posts about what folks say about interferon. From what I've read they say it is not good to do and does not help. Thus I was glad to see the yervoy vs pd1 trial for stage 3 folks.
Artie
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- June 3, 2015 at 6:09 pm
Yervoy and pd1 are available locally for stage 4 folks but only via trial for stage 3. You can see some recent posts about what folks say about interferon. From what I've read they say it is not good to do and does not help. Thus I was glad to see the yervoy vs pd1 trial for stage 3 folks.
Artie
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- June 3, 2015 at 6:09 pm
Yervoy and pd1 are available locally for stage 4 folks but only via trial for stage 3. You can see some recent posts about what folks say about interferon. From what I've read they say it is not good to do and does not help. Thus I was glad to see the yervoy vs pd1 trial for stage 3 folks.
Artie
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- June 4, 2015 at 8:24 pm
Hi Jenny- sorry for you had to find us, but I just wanted to say that the James is an awesome place and you are in good hands! Which melanoma specialist are you seeing? I'm familiar with Dr Agnese (surgical oncologist) and Dr Olencki (medical) both are awesome
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- June 4, 2015 at 8:24 pm
Hi Jenny- sorry for you had to find us, but I just wanted to say that the James is an awesome place and you are in good hands! Which melanoma specialist are you seeing? I'm familiar with Dr Agnese (surgical oncologist) and Dr Olencki (medical) both are awesome
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- June 4, 2015 at 8:24 pm
Hi Jenny- sorry for you had to find us, but I just wanted to say that the James is an awesome place and you are in good hands! Which melanoma specialist are you seeing? I'm familiar with Dr Agnese (surgical oncologist) and Dr Olencki (medical) both are awesome
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- June 3, 2015 at 1:38 pm
I'm going to be seen at the James Cancer Center at Ohio State University. Can you get these medications locally, or do you have to be part of a trial somewhere? My surgeon talked to me about Interferon, but she said the Oncologist would obviously know more about treatment options.
-
- June 3, 2015 at 11:41 am
If that's stage 3 then the best trial to my knowledge is the yervoy vs pd1 trial for stage 3 folks. Which big referral center are you going to? Also not only should you see a melanoma specialist but they should have a sense of urgency like a melanoma specialist should have.
Artie
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- June 3, 2015 at 11:41 am
If that's stage 3 then the best trial to my knowledge is the yervoy vs pd1 trial for stage 3 folks. Which big referral center are you going to? Also not only should you see a melanoma specialist but they should have a sense of urgency like a melanoma specialist should have.
Artie
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- June 3, 2015 at 1:44 pm
Hey Jenny,
So sorry for ALL your difficulties. Sometimes one more thing…just seems like way too much!!! Sounds like you have taken this disease by the horns, and while some prefer a more watch and wait approach, I think you have done a good job of being proactive already!
Basic FDA approved treatment for melanoma these days are:
1. BRAF inhibitors (oral medication) if your tumor is BRAF positive….usually combined with a MEK inhibitor to increase effect and decrease side effects. [About 50% of melanoma tumors are BRAF positive and in that population these drugs illicit a miraculous 70-80% response rate. Sadly, it is often a short lived response with tumors working around the drug in 7-9 months…though there are remarkable exceptions and patietns who have done well on the drugs for years!! Plus, the addition of a MEKi and changes in dosing schedules is extending the time these drugs are effective as well. They are very important for patients who need rapid reduction of disease burden before surgery or going on to immunotherapy.]
2. Immunotherapy: Yervoy/ipilimumab [response rate of about 20%], anti-PD1 (2 products: nivolumab/Opdivo, pembrolizumab/Keytruda) [response rate of 30-40%], IL2 (tough med, requires hospitalization while it is administered, often used in conjunction with TIL) [response rate of about 10%], interferon [low response rate with no evidence to support that extends the life of those who take it].
One catch: FDA approval of these drugs (except interferon and IL2) is for patients who are stage IV, or sometimes stage IIII with inoperable disease. Additionally, anti-PD1 drugs are approved for patients only after they have tried and 'failed' (ie experienced disease progression or had no positive response) to ipi and the BRAFi (if BRAF positive).
Now that all of that is clear as mud….here is the tricky part. The only FDA approved treatment for folks who are NED (with no evidence of disease….which I think you are…which is GREAT!!!) is interferon. However, all the drugs have been, or are currently being studied, in trials for patients who are NED as adjunct meds. BUT…that means you have to be in a trial for that. Which is fine, but just thought you should know that. I was in the NED arm of a Nivo trial for 2 1/2 years, starting in 2010 and remain disease free.
The best trial treatment going for melanoma with disease or without is an ipi/nivo combo. A study of Stage IV folks on the combo had a 45% response rate and better than 70% 2 year survival. It does come with a rather high side effect rate given the two meds. Here is a link to a post I wrote about its use as an adjuvant treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
I hope this has been helpful rather than more confusing. I am glad you are planning to see a melanoma specialist. That is essential if you want the best care. I wish you my best. Celeste
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- June 3, 2015 at 1:44 pm
Hey Jenny,
So sorry for ALL your difficulties. Sometimes one more thing…just seems like way too much!!! Sounds like you have taken this disease by the horns, and while some prefer a more watch and wait approach, I think you have done a good job of being proactive already!
Basic FDA approved treatment for melanoma these days are:
1. BRAF inhibitors (oral medication) if your tumor is BRAF positive….usually combined with a MEK inhibitor to increase effect and decrease side effects. [About 50% of melanoma tumors are BRAF positive and in that population these drugs illicit a miraculous 70-80% response rate. Sadly, it is often a short lived response with tumors working around the drug in 7-9 months…though there are remarkable exceptions and patietns who have done well on the drugs for years!! Plus, the addition of a MEKi and changes in dosing schedules is extending the time these drugs are effective as well. They are very important for patients who need rapid reduction of disease burden before surgery or going on to immunotherapy.]
2. Immunotherapy: Yervoy/ipilimumab [response rate of about 20%], anti-PD1 (2 products: nivolumab/Opdivo, pembrolizumab/Keytruda) [response rate of 30-40%], IL2 (tough med, requires hospitalization while it is administered, often used in conjunction with TIL) [response rate of about 10%], interferon [low response rate with no evidence to support that extends the life of those who take it].
One catch: FDA approval of these drugs (except interferon and IL2) is for patients who are stage IV, or sometimes stage IIII with inoperable disease. Additionally, anti-PD1 drugs are approved for patients only after they have tried and 'failed' (ie experienced disease progression or had no positive response) to ipi and the BRAFi (if BRAF positive).
Now that all of that is clear as mud….here is the tricky part. The only FDA approved treatment for folks who are NED (with no evidence of disease….which I think you are…which is GREAT!!!) is interferon. However, all the drugs have been, or are currently being studied, in trials for patients who are NED as adjunct meds. BUT…that means you have to be in a trial for that. Which is fine, but just thought you should know that. I was in the NED arm of a Nivo trial for 2 1/2 years, starting in 2010 and remain disease free.
The best trial treatment going for melanoma with disease or without is an ipi/nivo combo. A study of Stage IV folks on the combo had a 45% response rate and better than 70% 2 year survival. It does come with a rather high side effect rate given the two meds. Here is a link to a post I wrote about its use as an adjuvant treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
I hope this has been helpful rather than more confusing. I am glad you are planning to see a melanoma specialist. That is essential if you want the best care. I wish you my best. Celeste
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- June 3, 2015 at 1:44 pm
Hey Jenny,
So sorry for ALL your difficulties. Sometimes one more thing…just seems like way too much!!! Sounds like you have taken this disease by the horns, and while some prefer a more watch and wait approach, I think you have done a good job of being proactive already!
Basic FDA approved treatment for melanoma these days are:
1. BRAF inhibitors (oral medication) if your tumor is BRAF positive….usually combined with a MEK inhibitor to increase effect and decrease side effects. [About 50% of melanoma tumors are BRAF positive and in that population these drugs illicit a miraculous 70-80% response rate. Sadly, it is often a short lived response with tumors working around the drug in 7-9 months…though there are remarkable exceptions and patietns who have done well on the drugs for years!! Plus, the addition of a MEKi and changes in dosing schedules is extending the time these drugs are effective as well. They are very important for patients who need rapid reduction of disease burden before surgery or going on to immunotherapy.]
2. Immunotherapy: Yervoy/ipilimumab [response rate of about 20%], anti-PD1 (2 products: nivolumab/Opdivo, pembrolizumab/Keytruda) [response rate of 30-40%], IL2 (tough med, requires hospitalization while it is administered, often used in conjunction with TIL) [response rate of about 10%], interferon [low response rate with no evidence to support that extends the life of those who take it].
One catch: FDA approval of these drugs (except interferon and IL2) is for patients who are stage IV, or sometimes stage IIII with inoperable disease. Additionally, anti-PD1 drugs are approved for patients only after they have tried and 'failed' (ie experienced disease progression or had no positive response) to ipi and the BRAFi (if BRAF positive).
Now that all of that is clear as mud….here is the tricky part. The only FDA approved treatment for folks who are NED (with no evidence of disease….which I think you are…which is GREAT!!!) is interferon. However, all the drugs have been, or are currently being studied, in trials for patients who are NED as adjunct meds. BUT…that means you have to be in a trial for that. Which is fine, but just thought you should know that. I was in the NED arm of a Nivo trial for 2 1/2 years, starting in 2010 and remain disease free.
The best trial treatment going for melanoma with disease or without is an ipi/nivo combo. A study of Stage IV folks on the combo had a 45% response rate and better than 70% 2 year survival. It does come with a rather high side effect rate given the two meds. Here is a link to a post I wrote about its use as an adjuvant treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
I hope this has been helpful rather than more confusing. I am glad you are planning to see a melanoma specialist. That is essential if you want the best care. I wish you my best. Celeste
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- June 4, 2015 at 10:59 am
Your melanoma situation sounds very similar to mine. I had a 6 week old- removed a mole from my back – came back as melanoma. Had a very small amount in my sln. I understand the fear and panic. I ended up going to memorial Sloan Kettering for another opinio – had my CLND done there by dr coit. He is so amazing! Now I am also going to the james center. I see dr. Kari Kendra- melanoma specialist . I have really appreciated her. She is amazing! Try to stay positive. It is hard and I was not very good at it- but it does make a world of difference. I know I'm not really givig you helpful info- but I'm hoping I can give you hope and encouragement. I hit my year NED status in April. Wooohooo! Love on your babies!
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- June 4, 2015 at 10:59 am
Your melanoma situation sounds very similar to mine. I had a 6 week old- removed a mole from my back – came back as melanoma. Had a very small amount in my sln. I understand the fear and panic. I ended up going to memorial Sloan Kettering for another opinio – had my CLND done there by dr coit. He is so amazing! Now I am also going to the james center. I see dr. Kari Kendra- melanoma specialist . I have really appreciated her. She is amazing! Try to stay positive. It is hard and I was not very good at it- but it does make a world of difference. I know I'm not really givig you helpful info- but I'm hoping I can give you hope and encouragement. I hit my year NED status in April. Wooohooo! Love on your babies!
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- June 5, 2015 at 3:44 am
Hi to everyone, thanks for all the great comments! I saw the local oncologist today and left there feeling pretty defeated. He said based on my path, I'm actually 3b because of some 'micro ulceration' Doesn't change treatment much, I know. He offered 1.) Observation 2.) Interferon, or 3.) Go somewhere and get in a clinical trial. I'm going to see Dr. Kendra at OSU in less than 2 weeks, but he also said if I wanted a second 2nd opinion, I should go to Pittsburg and see Dr. Kirkwood. I called there to get scheduled, and their coordinator is supposed to call me back after they gather and review all of my records. Hopefully soon. OSU is getting ready to start a new trial (not enrolling yet) but it's double blinded and randomized to a treatment arm or placebo. I don't want placebo. I see my surgeon tomorrow am for my post op visit after the axillary CLND. She's more of a 'glass half full' kind of girl, and I'm not sure that's what I need right now. I'll travel anywhere I can to get what is considered the best treatment. I know being considered NED is not the end of this saga for me, but just the beginning of a long, life changing experience. My 4 yr old asked me about my surgical scar under my arm and she wanted to know 'how much does it cost to get that?' (We've been talking alot about money and cost lately because she wants every toy she sees on TV) I started to give a snarky answer about money and insurance, and then stopped myself and said "It didn't cost as much as it could have, honey." Thanks again everyone. I hope I can get as educated as you all are!
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- June 5, 2015 at 3:44 am
Hi to everyone, thanks for all the great comments! I saw the local oncologist today and left there feeling pretty defeated. He said based on my path, I'm actually 3b because of some 'micro ulceration' Doesn't change treatment much, I know. He offered 1.) Observation 2.) Interferon, or 3.) Go somewhere and get in a clinical trial. I'm going to see Dr. Kendra at OSU in less than 2 weeks, but he also said if I wanted a second 2nd opinion, I should go to Pittsburg and see Dr. Kirkwood. I called there to get scheduled, and their coordinator is supposed to call me back after they gather and review all of my records. Hopefully soon. OSU is getting ready to start a new trial (not enrolling yet) but it's double blinded and randomized to a treatment arm or placebo. I don't want placebo. I see my surgeon tomorrow am for my post op visit after the axillary CLND. She's more of a 'glass half full' kind of girl, and I'm not sure that's what I need right now. I'll travel anywhere I can to get what is considered the best treatment. I know being considered NED is not the end of this saga for me, but just the beginning of a long, life changing experience. My 4 yr old asked me about my surgical scar under my arm and she wanted to know 'how much does it cost to get that?' (We've been talking alot about money and cost lately because she wants every toy she sees on TV) I started to give a snarky answer about money and insurance, and then stopped myself and said "It didn't cost as much as it could have, honey." Thanks again everyone. I hope I can get as educated as you all are!
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- June 5, 2015 at 3:44 am
Hi to everyone, thanks for all the great comments! I saw the local oncologist today and left there feeling pretty defeated. He said based on my path, I'm actually 3b because of some 'micro ulceration' Doesn't change treatment much, I know. He offered 1.) Observation 2.) Interferon, or 3.) Go somewhere and get in a clinical trial. I'm going to see Dr. Kendra at OSU in less than 2 weeks, but he also said if I wanted a second 2nd opinion, I should go to Pittsburg and see Dr. Kirkwood. I called there to get scheduled, and their coordinator is supposed to call me back after they gather and review all of my records. Hopefully soon. OSU is getting ready to start a new trial (not enrolling yet) but it's double blinded and randomized to a treatment arm or placebo. I don't want placebo. I see my surgeon tomorrow am for my post op visit after the axillary CLND. She's more of a 'glass half full' kind of girl, and I'm not sure that's what I need right now. I'll travel anywhere I can to get what is considered the best treatment. I know being considered NED is not the end of this saga for me, but just the beginning of a long, life changing experience. My 4 yr old asked me about my surgical scar under my arm and she wanted to know 'how much does it cost to get that?' (We've been talking alot about money and cost lately because she wants every toy she sees on TV) I started to give a snarky answer about money and insurance, and then stopped myself and said "It didn't cost as much as it could have, honey." Thanks again everyone. I hope I can get as educated as you all are!
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- June 5, 2015 at 12:22 pm
Since you said you are willing to travel anywhere for the best treatment I would say go to either md anderson in Houston or memorial Sloan Kettering in New York. They are rated number 1 and 2 for overall cancer. From what I've read MSK is the best for melanoma but mda is very good too.
Artie
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- June 5, 2015 at 12:22 pm
Since you said you are willing to travel anywhere for the best treatment I would say go to either md anderson in Houston or memorial Sloan Kettering in New York. They are rated number 1 and 2 for overall cancer. From what I've read MSK is the best for melanoma but mda is very good too.
Artie
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- June 5, 2015 at 12:22 pm
Since you said you are willing to travel anywhere for the best treatment I would say go to either md anderson in Houston or memorial Sloan Kettering in New York. They are rated number 1 and 2 for overall cancer. From what I've read MSK is the best for melanoma but mda is very good too.
Artie
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- June 4, 2015 at 10:59 am
Your melanoma situation sounds very similar to mine. I had a 6 week old- removed a mole from my back – came back as melanoma. Had a very small amount in my sln. I understand the fear and panic. I ended up going to memorial Sloan Kettering for another opinio – had my CLND done there by dr coit. He is so amazing! Now I am also going to the james center. I see dr. Kari Kendra- melanoma specialist . I have really appreciated her. She is amazing! Try to stay positive. It is hard and I was not very good at it- but it does make a world of difference. I know I'm not really givig you helpful info- but I'm hoping I can give you hope and encouragement. I hit my year NED status in April. Wooohooo! Love on your babies!
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- June 4, 2015 at 6:34 pm
Sorry to hear of all you troubles but your dx is NOT a death sentence. I am stage 3a and am now 5 years with No Evidence of Disease. Does that mean I'm in the clear? Not hardly. But it's a darn good indicator. When I was dx I had 2 choices "wait and watch" or interferon. Interferon is a tough road and at that time they only had the 1 year protocol. Also it has not proven to extend life expectancy. I saw little benefit so chose to wait and watch. I did have a complete lymph node dissection, really just to ease my mind.
The best advise I can give you is get to a melanoma specialist, take someone with you. You'll have some time to make a decision. Think it over. Do what is right for you, not for someone else.
Good Luck,
Mary
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- June 4, 2015 at 6:34 pm
Sorry to hear of all you troubles but your dx is NOT a death sentence. I am stage 3a and am now 5 years with No Evidence of Disease. Does that mean I'm in the clear? Not hardly. But it's a darn good indicator. When I was dx I had 2 choices "wait and watch" or interferon. Interferon is a tough road and at that time they only had the 1 year protocol. Also it has not proven to extend life expectancy. I saw little benefit so chose to wait and watch. I did have a complete lymph node dissection, really just to ease my mind.
The best advise I can give you is get to a melanoma specialist, take someone with you. You'll have some time to make a decision. Think it over. Do what is right for you, not for someone else.
Good Luck,
Mary
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- June 4, 2015 at 6:34 pm
Sorry to hear of all you troubles but your dx is NOT a death sentence. I am stage 3a and am now 5 years with No Evidence of Disease. Does that mean I'm in the clear? Not hardly. But it's a darn good indicator. When I was dx I had 2 choices "wait and watch" or interferon. Interferon is a tough road and at that time they only had the 1 year protocol. Also it has not proven to extend life expectancy. I saw little benefit so chose to wait and watch. I did have a complete lymph node dissection, really just to ease my mind.
The best advise I can give you is get to a melanoma specialist, take someone with you. You'll have some time to make a decision. Think it over. Do what is right for you, not for someone else.
Good Luck,
Mary
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- June 8, 2015 at 9:23 pm
This is not an easy decision to make today. I suggest finding a melanoma oncologist who you trust and sticking with your gut feelings.
I faced this decision last year and chose interferon (which many have critiqued). I outline my decision on my blog but a lot of it had to do with buying myself time and avoiding long term permanent complications from the side effects that ipi can have in stage 3 melanoma. There is no right answer for everyone and is based on your age, your family, and your own weighing of risk vs benefit.
Wishing you luck with this massive decision.
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- June 8, 2015 at 9:23 pm
This is not an easy decision to make today. I suggest finding a melanoma oncologist who you trust and sticking with your gut feelings.
I faced this decision last year and chose interferon (which many have critiqued). I outline my decision on my blog but a lot of it had to do with buying myself time and avoiding long term permanent complications from the side effects that ipi can have in stage 3 melanoma. There is no right answer for everyone and is based on your age, your family, and your own weighing of risk vs benefit.
Wishing you luck with this massive decision.
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- June 8, 2015 at 11:22 pm
Thank you for sharing your blog! As I begin my treatment very soon of the injections, it helps to read what others are experiencing. Thank you again and I wish you well!
Kathy
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- June 8, 2015 at 11:22 pm
Thank you for sharing your blog! As I begin my treatment very soon of the injections, it helps to read what others are experiencing. Thank you again and I wish you well!
Kathy
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- June 8, 2015 at 11:22 pm
Thank you for sharing your blog! As I begin my treatment very soon of the injections, it helps to read what others are experiencing. Thank you again and I wish you well!
Kathy
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- June 8, 2015 at 9:23 pm
This is not an easy decision to make today. I suggest finding a melanoma oncologist who you trust and sticking with your gut feelings.
I faced this decision last year and chose interferon (which many have critiqued). I outline my decision on my blog but a lot of it had to do with buying myself time and avoiding long term permanent complications from the side effects that ipi can have in stage 3 melanoma. There is no right answer for everyone and is based on your age, your family, and your own weighing of risk vs benefit.
Wishing you luck with this massive decision.
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- June 8, 2015 at 11:13 pm
Hi Jenny,
I think many of us are alike. I have a very similar situation as yours and finally decided to go down the road of the pegylated interferon. I don't qualify for anything else because I don't have "enough cancer", that was a really weird and aggravating comment to hear despite my really liking my oncologist. I see the oncologist tomorrow but was diagnosed with strep throat today, I have kids too who like to share!, so I anticipate that my treatment will be delayed this week. This site is very informative and supportive I think it helps to know that anxiety when hearing the word "melanoma" and all of the other thoughts that go with it are normal. I am new to this disease so I check this site regularly. I have a list of questions for my oncologist. I made that list once I was over my last surgery and new that I had limited choices to make. Doing nothing is really not an option for me and the drug options are not ideal either but each of us has a decision to make. This really is an individualized disease, which is also frustrating. I guess what I am trying to say is to educate yourself, ask questions, and then choose what is best for you! Again, this group has been so helpful and I truly appreciate having a place where I can vent if I need to or ask questions even if they have been asked already a million times.
I hope this helps some!
Kathy
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- June 8, 2015 at 11:13 pm
Hi Jenny,
I think many of us are alike. I have a very similar situation as yours and finally decided to go down the road of the pegylated interferon. I don't qualify for anything else because I don't have "enough cancer", that was a really weird and aggravating comment to hear despite my really liking my oncologist. I see the oncologist tomorrow but was diagnosed with strep throat today, I have kids too who like to share!, so I anticipate that my treatment will be delayed this week. This site is very informative and supportive I think it helps to know that anxiety when hearing the word "melanoma" and all of the other thoughts that go with it are normal. I am new to this disease so I check this site regularly. I have a list of questions for my oncologist. I made that list once I was over my last surgery and new that I had limited choices to make. Doing nothing is really not an option for me and the drug options are not ideal either but each of us has a decision to make. This really is an individualized disease, which is also frustrating. I guess what I am trying to say is to educate yourself, ask questions, and then choose what is best for you! Again, this group has been so helpful and I truly appreciate having a place where I can vent if I need to or ask questions even if they have been asked already a million times.
I hope this helps some!
Kathy
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- June 9, 2015 at 2:03 pm
Hi Kathy, just wanted to wish you luck with the interferon! I did the high dose phase back in 2012 for 4 weeks. When given the choice of do nothing or fight ( Interferon) , I choose to fight. One month later and after a lot of reading about the drug that I was on I decided to change coarse. I didn't do well on the meds and decided that quality of life was more important than Interferon. Interferon really changed my personality and not for the better. My Liver was also not to happy with me and every week they had to keep lowering the dose. Looking back on my decision 3 years later, I am still happy with the choice. May be there should be a Interferon club started on this forum, where new melanoma patients can go and get information( just a thought). Wishing you the best with the treatments! Ed
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- June 9, 2015 at 8:03 pm
Thank you! I think that all of this is really a luck of the draw. I know doing nothing is not for me; so all I can say is I will try. I am like you in that I think quality of life is more important so I will do the same thing that you have done. If I don't have a good quality of life, then I will stop. We shall see! I think it really has helped me to hear others stories who have taken this drug. I saw my doctor today and I will have a pet scan before all of this; I didn't receive one as my diagnosis and surgery happened so quickly. I am happy about that as I would like to make sure that I really am the stage they say I am… It is all very frustrating and confusing as well. One other challenge is that I am receiving treatment where I work. I am also the educator of the oncology dept so sometimes too much knowledgwe is very harmful. I admit that I took my patholgy report and had myself diagnosed with a progrnosis before I even saw the surgeon. Needless to say I am a bit high strung so if this has taught me anything,it is to ask questions and not over think too much!
An interferon club would be great! I never thought I would say that…. but the experiences of others really does help take some of the madness away from the diagnosis and the treatment! Congrats to you for the 5 years of NED! I hope that I am headed down that path as well. I have a lanyard I wear that says "whatever it takes"…. it is actually one of my children's school mottos so I look at that when I think of just saying heck with the treatment! I start my treatment on June 19th as I developed strep throat yesterday (a little present from my one child :), so after my blood work and PET scan I will start the treatment. I bet this is way more information than you wanted to know!
Thank you for sharing your story again. It really does help.
Kathy
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- June 9, 2015 at 8:05 pm
Oops sorry for the errors! I meant 3 years not 5 but we will just say that your 5 year mark will be successful!
Kathy
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- June 9, 2015 at 8:27 pm
Hi again Kathy, I didn't want to bore you with my whole story but if you are interested you can take a look at it by clicking on my name. I did progress to stage 4 and have been on checkmate 67 study by BMS since January of 2014 and doing great. Wishing you the best and I read something from ASCO 2015 that Pet scans have about a 30% chance of false positives. Ed
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- June 9, 2015 at 11:33 pm
You didn't bore me with your story! We all learn from one another and it does help to know the story, so to speak. Speaking of "stories", I think sometimes when your colleagues and friends, etc, learn that you have melanoma, that is what you become, a "story". I had to go to employee health a few weeks ago to obtain my return to work physical, if that is what you want to call it. The physician's assistance walked into the room and asked me for "my story". I told her and then was released for work. Not that I am looking for an in-depth exam from others but you would think that she would have looked at my incisions, etc for liability purposes. It does sound like I am complaining but I am not; it is just mind boggling to see what people will do in their roles. I know, as a nurse, I would exam the patient as there could be all types of risks that come with any type of surgery. I am getting off the topic here…
I knew that the results of the PET scans are questionable but my question to the oncologist was, "if I have melanoma and it has spread to another area of my body, would I receive the same drug?". I think this is what made him think as he really had border line opinions on the scan. I was not looking for more medical interventions, I just want to make sure they are treating me with the right drug for the right reasons. If you can't tell yet, I am a bit high strung….
By the way, it is encouraging to hear that you are doing so well and the drug you are taking is working for you! I think we all need as much positive info as we can get!
Kathy
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- June 9, 2015 at 11:33 pm
You didn't bore me with your story! We all learn from one another and it does help to know the story, so to speak. Speaking of "stories", I think sometimes when your colleagues and friends, etc, learn that you have melanoma, that is what you become, a "story". I had to go to employee health a few weeks ago to obtain my return to work physical, if that is what you want to call it. The physician's assistance walked into the room and asked me for "my story". I told her and then was released for work. Not that I am looking for an in-depth exam from others but you would think that she would have looked at my incisions, etc for liability purposes. It does sound like I am complaining but I am not; it is just mind boggling to see what people will do in their roles. I know, as a nurse, I would exam the patient as there could be all types of risks that come with any type of surgery. I am getting off the topic here…
I knew that the results of the PET scans are questionable but my question to the oncologist was, "if I have melanoma and it has spread to another area of my body, would I receive the same drug?". I think this is what made him think as he really had border line opinions on the scan. I was not looking for more medical interventions, I just want to make sure they are treating me with the right drug for the right reasons. If you can't tell yet, I am a bit high strung….
By the way, it is encouraging to hear that you are doing so well and the drug you are taking is working for you! I think we all need as much positive info as we can get!
Kathy
-
- June 9, 2015 at 11:33 pm
You didn't bore me with your story! We all learn from one another and it does help to know the story, so to speak. Speaking of "stories", I think sometimes when your colleagues and friends, etc, learn that you have melanoma, that is what you become, a "story". I had to go to employee health a few weeks ago to obtain my return to work physical, if that is what you want to call it. The physician's assistance walked into the room and asked me for "my story". I told her and then was released for work. Not that I am looking for an in-depth exam from others but you would think that she would have looked at my incisions, etc for liability purposes. It does sound like I am complaining but I am not; it is just mind boggling to see what people will do in their roles. I know, as a nurse, I would exam the patient as there could be all types of risks that come with any type of surgery. I am getting off the topic here…
I knew that the results of the PET scans are questionable but my question to the oncologist was, "if I have melanoma and it has spread to another area of my body, would I receive the same drug?". I think this is what made him think as he really had border line opinions on the scan. I was not looking for more medical interventions, I just want to make sure they are treating me with the right drug for the right reasons. If you can't tell yet, I am a bit high strung….
By the way, it is encouraging to hear that you are doing so well and the drug you are taking is working for you! I think we all need as much positive info as we can get!
Kathy
-
- June 9, 2015 at 8:27 pm
Hi again Kathy, I didn't want to bore you with my whole story but if you are interested you can take a look at it by clicking on my name. I did progress to stage 4 and have been on checkmate 67 study by BMS since January of 2014 and doing great. Wishing you the best and I read something from ASCO 2015 that Pet scans have about a 30% chance of false positives. Ed
-
- June 9, 2015 at 8:27 pm
Hi again Kathy, I didn't want to bore you with my whole story but if you are interested you can take a look at it by clicking on my name. I did progress to stage 4 and have been on checkmate 67 study by BMS since January of 2014 and doing great. Wishing you the best and I read something from ASCO 2015 that Pet scans have about a 30% chance of false positives. Ed
-
- June 9, 2015 at 8:05 pm
Oops sorry for the errors! I meant 3 years not 5 but we will just say that your 5 year mark will be successful!
Kathy
-
- June 9, 2015 at 8:05 pm
Oops sorry for the errors! I meant 3 years not 5 but we will just say that your 5 year mark will be successful!
Kathy
-
- June 9, 2015 at 8:03 pm
Thank you! I think that all of this is really a luck of the draw. I know doing nothing is not for me; so all I can say is I will try. I am like you in that I think quality of life is more important so I will do the same thing that you have done. If I don't have a good quality of life, then I will stop. We shall see! I think it really has helped me to hear others stories who have taken this drug. I saw my doctor today and I will have a pet scan before all of this; I didn't receive one as my diagnosis and surgery happened so quickly. I am happy about that as I would like to make sure that I really am the stage they say I am… It is all very frustrating and confusing as well. One other challenge is that I am receiving treatment where I work. I am also the educator of the oncology dept so sometimes too much knowledgwe is very harmful. I admit that I took my patholgy report and had myself diagnosed with a progrnosis before I even saw the surgeon. Needless to say I am a bit high strung so if this has taught me anything,it is to ask questions and not over think too much!
An interferon club would be great! I never thought I would say that…. but the experiences of others really does help take some of the madness away from the diagnosis and the treatment! Congrats to you for the 5 years of NED! I hope that I am headed down that path as well. I have a lanyard I wear that says "whatever it takes"…. it is actually one of my children's school mottos so I look at that when I think of just saying heck with the treatment! I start my treatment on June 19th as I developed strep throat yesterday (a little present from my one child :), so after my blood work and PET scan I will start the treatment. I bet this is way more information than you wanted to know!
Thank you for sharing your story again. It really does help.
Kathy
-
- June 9, 2015 at 8:03 pm
Thank you! I think that all of this is really a luck of the draw. I know doing nothing is not for me; so all I can say is I will try. I am like you in that I think quality of life is more important so I will do the same thing that you have done. If I don't have a good quality of life, then I will stop. We shall see! I think it really has helped me to hear others stories who have taken this drug. I saw my doctor today and I will have a pet scan before all of this; I didn't receive one as my diagnosis and surgery happened so quickly. I am happy about that as I would like to make sure that I really am the stage they say I am… It is all very frustrating and confusing as well. One other challenge is that I am receiving treatment where I work. I am also the educator of the oncology dept so sometimes too much knowledgwe is very harmful. I admit that I took my patholgy report and had myself diagnosed with a progrnosis before I even saw the surgeon. Needless to say I am a bit high strung so if this has taught me anything,it is to ask questions and not over think too much!
An interferon club would be great! I never thought I would say that…. but the experiences of others really does help take some of the madness away from the diagnosis and the treatment! Congrats to you for the 5 years of NED! I hope that I am headed down that path as well. I have a lanyard I wear that says "whatever it takes"…. it is actually one of my children's school mottos so I look at that when I think of just saying heck with the treatment! I start my treatment on June 19th as I developed strep throat yesterday (a little present from my one child :), so after my blood work and PET scan I will start the treatment. I bet this is way more information than you wanted to know!
Thank you for sharing your story again. It really does help.
Kathy
-
- June 9, 2015 at 2:03 pm
Hi Kathy, just wanted to wish you luck with the interferon! I did the high dose phase back in 2012 for 4 weeks. When given the choice of do nothing or fight ( Interferon) , I choose to fight. One month later and after a lot of reading about the drug that I was on I decided to change coarse. I didn't do well on the meds and decided that quality of life was more important than Interferon. Interferon really changed my personality and not for the better. My Liver was also not to happy with me and every week they had to keep lowering the dose. Looking back on my decision 3 years later, I am still happy with the choice. May be there should be a Interferon club started on this forum, where new melanoma patients can go and get information( just a thought). Wishing you the best with the treatments! Ed
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- June 9, 2015 at 2:03 pm
Hi Kathy, just wanted to wish you luck with the interferon! I did the high dose phase back in 2012 for 4 weeks. When given the choice of do nothing or fight ( Interferon) , I choose to fight. One month later and after a lot of reading about the drug that I was on I decided to change coarse. I didn't do well on the meds and decided that quality of life was more important than Interferon. Interferon really changed my personality and not for the better. My Liver was also not to happy with me and every week they had to keep lowering the dose. Looking back on my decision 3 years later, I am still happy with the choice. May be there should be a Interferon club started on this forum, where new melanoma patients can go and get information( just a thought). Wishing you the best with the treatments! Ed
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- June 8, 2015 at 11:13 pm
Hi Jenny,
I think many of us are alike. I have a very similar situation as yours and finally decided to go down the road of the pegylated interferon. I don't qualify for anything else because I don't have "enough cancer", that was a really weird and aggravating comment to hear despite my really liking my oncologist. I see the oncologist tomorrow but was diagnosed with strep throat today, I have kids too who like to share!, so I anticipate that my treatment will be delayed this week. This site is very informative and supportive I think it helps to know that anxiety when hearing the word "melanoma" and all of the other thoughts that go with it are normal. I am new to this disease so I check this site regularly. I have a list of questions for my oncologist. I made that list once I was over my last surgery and new that I had limited choices to make. Doing nothing is really not an option for me and the drug options are not ideal either but each of us has a decision to make. This really is an individualized disease, which is also frustrating. I guess what I am trying to say is to educate yourself, ask questions, and then choose what is best for you! Again, this group has been so helpful and I truly appreciate having a place where I can vent if I need to or ask questions even if they have been asked already a million times.
I hope this helps some!
Kathy
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- June 10, 2015 at 3:28 am
Hello Jenny,so sorry for your diagnosis and the loss of your son. I too am stage 3a with just a few cells in the sentinel lymph node. I chose watch and wait and have been Ned since diagnosis November 2011. I almost decided to do the interferon because I was just so scared of not fighting it. I did my own research on the studies done and that's how I made my choice. There are options now to choose. Good luck and prayers sent your way. Stay strong.
Kim
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- June 10, 2015 at 3:28 am
Hello Jenny,so sorry for your diagnosis and the loss of your son. I too am stage 3a with just a few cells in the sentinel lymph node. I chose watch and wait and have been Ned since diagnosis November 2011. I almost decided to do the interferon because I was just so scared of not fighting it. I did my own research on the studies done and that's how I made my choice. There are options now to choose. Good luck and prayers sent your way. Stay strong.
Kim
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- June 10, 2015 at 3:28 am
Hello Jenny,so sorry for your diagnosis and the loss of your son. I too am stage 3a with just a few cells in the sentinel lymph node. I chose watch and wait and have been Ned since diagnosis November 2011. I almost decided to do the interferon because I was just so scared of not fighting it. I did my own research on the studies done and that's how I made my choice. There are options now to choose. Good luck and prayers sent your way. Stay strong.
Kim
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Tagged: cutaneous melanoma
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