› Forums › General Melanoma Community › New mom with stage 4
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davidfromsingapore.
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- December 31, 2011 at 11:56 pm
Happy new year! On Dec 13 I was told I had a brain tumor after about 2 months of ongoing headaches. I thought I had the flu. On Dec 14 I had a craniotomy to remove the tumor and pathology determined it was melanoma. I had a primary melanoma in situ in 2007 after the birth of my first child. I had a second baby just 6 months ago. I am trying very hard not to connect these things with the pregnancies. My oncologist says that there is no connection. Nonetheless, I am working through this slowly trying to figure out our next steps.
Happy new year! On Dec 13 I was told I had a brain tumor after about 2 months of ongoing headaches. I thought I had the flu. On Dec 14 I had a craniotomy to remove the tumor and pathology determined it was melanoma. I had a primary melanoma in situ in 2007 after the birth of my first child. I had a second baby just 6 months ago. I am trying very hard not to connect these things with the pregnancies. My oncologist says that there is no connection. Nonetheless, I am working through this slowly trying to figure out our next steps. I understand that there is more diagnostics to do as they want to verify the node on my lung is not a tumor and a ultrasound of my thyroid as well. Opthamology exam to make sure my eyes are clear and SRS (gamma knife) to the tumor bed in my brain to get any residual cells. I am just in shock I guess. After thinking that there was only a small chance this would ever come back (2-5%) and then to wake up one day and be told I have a brain tumor and stage 4 melanoma was a huge shock and complete life adjustment. I have been to every dermatology follow up, had lots of other moles removed/biopsied with negative results. I just don't understand how it happened quite like this. I have my boys to think of, my husband has been great through all this but I am scared of what the future might hold. So far, things look good but the scary statistics and stories that are out there don't make it easy.
I hope there are others with stage 4 on this board that can help me to keep up the faith and hope that this can be beat for the long term and that I will have a long life with my boys! Best of luck to you all and happy and healthy new year!!!
Brenda
- Replies
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- January 1, 2012 at 2:44 am
Brenda, welcome to our forum and happy New Year to you as well! The way you are feeling at the moment is very understandable.
The one certain thing about melanoma is its unpredictability. However, the statistics that you may have read only relate to what has happened to some other people in the past. Melanoma research is advancing rapidly, with two new drugs being approved by the FDA this year. Therefore, please don't think that the statistics will accurately predict what will happen in any individual case.
There are a number of people here with stage 4 melanoma, and some continue to defy the odds.
Hope this helps.
Frank from Australia
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- January 1, 2012 at 3:04 pm
Frank,
thank you for the support and words of encouragement! I truly hope for all of us that the advances continue and that we can get the treatments we need to beat this disease and defy those odds! I have too much riding on this to give up or give in!
Thanks again and take care!
Brenda
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- January 1, 2012 at 3:04 pm
Frank,
thank you for the support and words of encouragement! I truly hope for all of us that the advances continue and that we can get the treatments we need to beat this disease and defy those odds! I have too much riding on this to give up or give in!
Thanks again and take care!
Brenda
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- January 1, 2012 at 3:04 pm
Frank,
thank you for the support and words of encouragement! I truly hope for all of us that the advances continue and that we can get the treatments we need to beat this disease and defy those odds! I have too much riding on this to give up or give in!
Thanks again and take care!
Brenda
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- January 1, 2012 at 2:44 am
Brenda, welcome to our forum and happy New Year to you as well! The way you are feeling at the moment is very understandable.
The one certain thing about melanoma is its unpredictability. However, the statistics that you may have read only relate to what has happened to some other people in the past. Melanoma research is advancing rapidly, with two new drugs being approved by the FDA this year. Therefore, please don't think that the statistics will accurately predict what will happen in any individual case.
There are a number of people here with stage 4 melanoma, and some continue to defy the odds.
Hope this helps.
Frank from Australia
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- January 1, 2012 at 2:44 am
Brenda, welcome to our forum and happy New Year to you as well! The way you are feeling at the moment is very understandable.
The one certain thing about melanoma is its unpredictability. However, the statistics that you may have read only relate to what has happened to some other people in the past. Melanoma research is advancing rapidly, with two new drugs being approved by the FDA this year. Therefore, please don't think that the statistics will accurately predict what will happen in any individual case.
There are a number of people here with stage 4 melanoma, and some continue to defy the odds.
Hope this helps.
Frank from Australia
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- January 1, 2012 at 2:45 am
Hi Brenda,
There are tons (literally!) of stage 4 survivors here who will be jumping on to cheer you on and give you some experienced advice. At stage 3 (for over 10 years) I can't do that but I can send powerful positive thoughts your way as well as keep you, your husband, Jacob and Matthew in my prayers. Thank you for serving me and our majestic country.
A happy and healthy new year to you too,
Cynthia C
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- January 1, 2012 at 3:09 pm
Cynthia,
Thank you so much for your support and encouragement! I am so glad to hear that there are others out there that have been there and can help me get through this journey. it is quite intimidating and I just hope that we all navigate it well and with grace and courage. Thank you for praying for us and for your appreciation of the military. I just hope that I get to continue to serve the 8 years I have left until my retirement! This horrible diagnosis threatens that and I am truly frightened by that prospect. I have been in for 18 years and love my job!
Best wishes to you!
Brenda
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- January 1, 2012 at 3:09 pm
Cynthia,
Thank you so much for your support and encouragement! I am so glad to hear that there are others out there that have been there and can help me get through this journey. it is quite intimidating and I just hope that we all navigate it well and with grace and courage. Thank you for praying for us and for your appreciation of the military. I just hope that I get to continue to serve the 8 years I have left until my retirement! This horrible diagnosis threatens that and I am truly frightened by that prospect. I have been in for 18 years and love my job!
Best wishes to you!
Brenda
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- January 1, 2012 at 3:09 pm
Cynthia,
Thank you so much for your support and encouragement! I am so glad to hear that there are others out there that have been there and can help me get through this journey. it is quite intimidating and I just hope that we all navigate it well and with grace and courage. Thank you for praying for us and for your appreciation of the military. I just hope that I get to continue to serve the 8 years I have left until my retirement! This horrible diagnosis threatens that and I am truly frightened by that prospect. I have been in for 18 years and love my job!
Best wishes to you!
Brenda
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- January 1, 2012 at 2:45 am
Hi Brenda,
There are tons (literally!) of stage 4 survivors here who will be jumping on to cheer you on and give you some experienced advice. At stage 3 (for over 10 years) I can't do that but I can send powerful positive thoughts your way as well as keep you, your husband, Jacob and Matthew in my prayers. Thank you for serving me and our majestic country.
A happy and healthy new year to you too,
Cynthia C
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- January 1, 2012 at 2:45 am
Hi Brenda,
There are tons (literally!) of stage 4 survivors here who will be jumping on to cheer you on and give you some experienced advice. At stage 3 (for over 10 years) I can't do that but I can send powerful positive thoughts your way as well as keep you, your husband, Jacob and Matthew in my prayers. Thank you for serving me and our majestic country.
A happy and healthy new year to you too,
Cynthia C
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- January 1, 2012 at 3:49 am
Brenda, I too can relate. I never had any previous moles that came back with melanoma, etc, just had some removed that looked weird, came back with fine results. Then June 2011, I had horrible headaches, went and they found a huge tumor above my eye (size of an orange!), had a craniotomy, and then was diagnosed that it was Melanoma and they found spots on my Liver & Lung (all around 6cm)
I'm 31 years old, with a 6 year old and a 2 year old! Imagine my horror as well finding this out, and typing in STAGE IV MELANOMA and seeing the "you die in 2 years" on every page I went to! Thank god I found THIS PAGE and found that many survive much longer than that (depending on if your body & treatments can kill the tumors!).
I had my 1st treatment, Yervoy (IPI), from September thru November, and December 2nd, I was told all my tumors were shrinking!! They have no clude how long Yervoy will work, but I hope it's YEARS if I'm lucky.
I too want to see my children grow up, nobody wants to lose a parent, but all I know is I want to see them thru school, some of the toughest years of their lives, and they will be grown and can care for themselves and can enter the adult world I always hoped I'd get to see them into before this cancer shit happened!
This board & a few people I met thru Facebook, helped me keep a bit of hope alive!!
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- January 1, 2012 at 4:54 am
Thank you for your reply! Yes, having small children with this diagnosis is so scary! My youngest is almost 6 months old. My oldest is 4 years old. The websites have nothing but the scariest of information out there! I have hope that this will be treatable and that I will be around for a long time but it is very frightening. The thought that my youngest might never know me is really over the top for me. Right now there are no other tumors that we know about but I just don't know what will happen as most people are in the same boat. I am even still nursing and have to decide how and when to quit as I am sure some of the treatments won't be compatible.
While I am very sorry for your situation, it is good to know there are others out there like me!
Best of luck!
Brenda
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- January 1, 2012 at 4:54 am
Thank you for your reply! Yes, having small children with this diagnosis is so scary! My youngest is almost 6 months old. My oldest is 4 years old. The websites have nothing but the scariest of information out there! I have hope that this will be treatable and that I will be around for a long time but it is very frightening. The thought that my youngest might never know me is really over the top for me. Right now there are no other tumors that we know about but I just don't know what will happen as most people are in the same boat. I am even still nursing and have to decide how and when to quit as I am sure some of the treatments won't be compatible.
While I am very sorry for your situation, it is good to know there are others out there like me!
Best of luck!
Brenda
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- January 1, 2012 at 4:54 am
Thank you for your reply! Yes, having small children with this diagnosis is so scary! My youngest is almost 6 months old. My oldest is 4 years old. The websites have nothing but the scariest of information out there! I have hope that this will be treatable and that I will be around for a long time but it is very frightening. The thought that my youngest might never know me is really over the top for me. Right now there are no other tumors that we know about but I just don't know what will happen as most people are in the same boat. I am even still nursing and have to decide how and when to quit as I am sure some of the treatments won't be compatible.
While I am very sorry for your situation, it is good to know there are others out there like me!
Best of luck!
Brenda
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- January 1, 2012 at 3:49 am
Brenda, I too can relate. I never had any previous moles that came back with melanoma, etc, just had some removed that looked weird, came back with fine results. Then June 2011, I had horrible headaches, went and they found a huge tumor above my eye (size of an orange!), had a craniotomy, and then was diagnosed that it was Melanoma and they found spots on my Liver & Lung (all around 6cm)
I'm 31 years old, with a 6 year old and a 2 year old! Imagine my horror as well finding this out, and typing in STAGE IV MELANOMA and seeing the "you die in 2 years" on every page I went to! Thank god I found THIS PAGE and found that many survive much longer than that (depending on if your body & treatments can kill the tumors!).
I had my 1st treatment, Yervoy (IPI), from September thru November, and December 2nd, I was told all my tumors were shrinking!! They have no clude how long Yervoy will work, but I hope it's YEARS if I'm lucky.
I too want to see my children grow up, nobody wants to lose a parent, but all I know is I want to see them thru school, some of the toughest years of their lives, and they will be grown and can care for themselves and can enter the adult world I always hoped I'd get to see them into before this cancer shit happened!
This board & a few people I met thru Facebook, helped me keep a bit of hope alive!!
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- January 1, 2012 at 3:49 am
Brenda, I too can relate. I never had any previous moles that came back with melanoma, etc, just had some removed that looked weird, came back with fine results. Then June 2011, I had horrible headaches, went and they found a huge tumor above my eye (size of an orange!), had a craniotomy, and then was diagnosed that it was Melanoma and they found spots on my Liver & Lung (all around 6cm)
I'm 31 years old, with a 6 year old and a 2 year old! Imagine my horror as well finding this out, and typing in STAGE IV MELANOMA and seeing the "you die in 2 years" on every page I went to! Thank god I found THIS PAGE and found that many survive much longer than that (depending on if your body & treatments can kill the tumors!).
I had my 1st treatment, Yervoy (IPI), from September thru November, and December 2nd, I was told all my tumors were shrinking!! They have no clude how long Yervoy will work, but I hope it's YEARS if I'm lucky.
I too want to see my children grow up, nobody wants to lose a parent, but all I know is I want to see them thru school, some of the toughest years of their lives, and they will be grown and can care for themselves and can enter the adult world I always hoped I'd get to see them into before this cancer shit happened!
This board & a few people I met thru Facebook, helped me keep a bit of hope alive!!
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- January 1, 2012 at 5:20 am
Hi Brenda,
My heart goes out to you and all the others with stage 4. I was just given the terrible news last week that I have stage 4 as well. I had a wide excision 14 years ago of the primary and have been NED since then. All of a sudden a few weeks ago I had some tumors show up and was told I am stage 4 now. Wow, this is devastaing. I have had the same feelings that you have had, how could this happen. I don't have young children at home anymore, but it is still very hard. I have 4 very young grandchildren I would like to see grow up.
Thanks for sharing your story and I hope we can all be great support for eachother.
Take care,
~Cindy
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- January 1, 2012 at 3:02 pm
Cindy,
thank you so much! I think that no matter when the diagnosis comes it is a huge shock, a kick in the gut really. I pray that we all find the strength and courage to get through this disease. We owe it to ourselves and to the beautiful children in our lives (young and old) to get well and to live a long healthy life!
Take care!
Brenda
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- January 1, 2012 at 3:02 pm
Cindy,
thank you so much! I think that no matter when the diagnosis comes it is a huge shock, a kick in the gut really. I pray that we all find the strength and courage to get through this disease. We owe it to ourselves and to the beautiful children in our lives (young and old) to get well and to live a long healthy life!
Take care!
Brenda
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- January 1, 2012 at 3:02 pm
Cindy,
thank you so much! I think that no matter when the diagnosis comes it is a huge shock, a kick in the gut really. I pray that we all find the strength and courage to get through this disease. We owe it to ourselves and to the beautiful children in our lives (young and old) to get well and to live a long healthy life!
Take care!
Brenda
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- January 1, 2012 at 5:20 am
Hi Brenda,
My heart goes out to you and all the others with stage 4. I was just given the terrible news last week that I have stage 4 as well. I had a wide excision 14 years ago of the primary and have been NED since then. All of a sudden a few weeks ago I had some tumors show up and was told I am stage 4 now. Wow, this is devastaing. I have had the same feelings that you have had, how could this happen. I don't have young children at home anymore, but it is still very hard. I have 4 very young grandchildren I would like to see grow up.
Thanks for sharing your story and I hope we can all be great support for eachother.
Take care,
~Cindy
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- January 1, 2012 at 5:20 am
Hi Brenda,
My heart goes out to you and all the others with stage 4. I was just given the terrible news last week that I have stage 4 as well. I had a wide excision 14 years ago of the primary and have been NED since then. All of a sudden a few weeks ago I had some tumors show up and was told I am stage 4 now. Wow, this is devastaing. I have had the same feelings that you have had, how could this happen. I don't have young children at home anymore, but it is still very hard. I have 4 very young grandchildren I would like to see grow up.
Thanks for sharing your story and I hope we can all be great support for eachother.
Take care,
~Cindy
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- January 1, 2012 at 4:16 pm
Hi Brenda,
Happy New Year, and I pray that the new treatments work for you for many, many years!!
Your story is so scary to me, as I have been diagnosed with 2 in-situs, and told that I am "cured". Did your doctors explain how you could go from in-situ to Stage 4?? Do they think that maybe you have another yet undiscovered primary somewhere?
Why is there no real follow-up recommended for in-situs other than regular derm visits???
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- January 1, 2012 at 4:16 pm
Hi Brenda,
Happy New Year, and I pray that the new treatments work for you for many, many years!!
Your story is so scary to me, as I have been diagnosed with 2 in-situs, and told that I am "cured". Did your doctors explain how you could go from in-situ to Stage 4?? Do they think that maybe you have another yet undiscovered primary somewhere?
Why is there no real follow-up recommended for in-situs other than regular derm visits???
-
- January 1, 2012 at 6:37 pm
Hi! No, there is not much else that is done, at least that I am aware of, for in situs. I had to go to the derm for follow ups every 3 months for 2 years, and then every 4-6 months for 2 years because they kept finding atypical moles. There really isn't much more to test for if there isn't anything going on at the primary site and no other melanomas to be found. the docs basically said that a cell or two from the primary site got into my blood stream and found a home in my brain. They have no idea how long they had been growing. I suspect based on some symptoms that I had that it could have been for the last year to couple of months. We will never know for certain. I have been scanned, blood has been taken, and 2 dermatologists did a full body check to see if there are any other moles that may have become melanomas with negative findings. I still have to have the opthamologist look at my eyes though I had two very thorough optometry exams in November and December because of the headaches which I attributed to tension or an out of date eye prescription. They think there may be a something in my right lung and possibly on my thyroid. So, I still have a few more things to do to rule those out as tumor sites. But, overall, there was nothing suggesting spread of the original melanoma until the headache from hell I had about 3 weeks ago. i had been having headaches since october but this one weekend was the worst. Nothing helped. I couldn't eat, sleep, drink, think…nothing. It was agony. I went back to the doctor and she treated me for a migraine, including a CT scan. They saw "something" and made me do an MRI. The next morning at 6:30am I was in with the neurologist being told I had a tumor. I am in the military so they medevac'ed me to Bethesda for treatment that day. The next morning I had my craniotomy. The tumor was in my right frontal lobe and was easy to remove. It all happened so fast! i was assured by my oncologist that there was nothing we could have done to catch this any sooner. It just was unforeseeable and against the odds. Lucky me.
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- January 1, 2012 at 6:37 pm
Hi! No, there is not much else that is done, at least that I am aware of, for in situs. I had to go to the derm for follow ups every 3 months for 2 years, and then every 4-6 months for 2 years because they kept finding atypical moles. There really isn't much more to test for if there isn't anything going on at the primary site and no other melanomas to be found. the docs basically said that a cell or two from the primary site got into my blood stream and found a home in my brain. They have no idea how long they had been growing. I suspect based on some symptoms that I had that it could have been for the last year to couple of months. We will never know for certain. I have been scanned, blood has been taken, and 2 dermatologists did a full body check to see if there are any other moles that may have become melanomas with negative findings. I still have to have the opthamologist look at my eyes though I had two very thorough optometry exams in November and December because of the headaches which I attributed to tension or an out of date eye prescription. They think there may be a something in my right lung and possibly on my thyroid. So, I still have a few more things to do to rule those out as tumor sites. But, overall, there was nothing suggesting spread of the original melanoma until the headache from hell I had about 3 weeks ago. i had been having headaches since october but this one weekend was the worst. Nothing helped. I couldn't eat, sleep, drink, think…nothing. It was agony. I went back to the doctor and she treated me for a migraine, including a CT scan. They saw "something" and made me do an MRI. The next morning at 6:30am I was in with the neurologist being told I had a tumor. I am in the military so they medevac'ed me to Bethesda for treatment that day. The next morning I had my craniotomy. The tumor was in my right frontal lobe and was easy to remove. It all happened so fast! i was assured by my oncologist that there was nothing we could have done to catch this any sooner. It just was unforeseeable and against the odds. Lucky me.
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- January 1, 2012 at 6:37 pm
Hi! No, there is not much else that is done, at least that I am aware of, for in situs. I had to go to the derm for follow ups every 3 months for 2 years, and then every 4-6 months for 2 years because they kept finding atypical moles. There really isn't much more to test for if there isn't anything going on at the primary site and no other melanomas to be found. the docs basically said that a cell or two from the primary site got into my blood stream and found a home in my brain. They have no idea how long they had been growing. I suspect based on some symptoms that I had that it could have been for the last year to couple of months. We will never know for certain. I have been scanned, blood has been taken, and 2 dermatologists did a full body check to see if there are any other moles that may have become melanomas with negative findings. I still have to have the opthamologist look at my eyes though I had two very thorough optometry exams in November and December because of the headaches which I attributed to tension or an out of date eye prescription. They think there may be a something in my right lung and possibly on my thyroid. So, I still have a few more things to do to rule those out as tumor sites. But, overall, there was nothing suggesting spread of the original melanoma until the headache from hell I had about 3 weeks ago. i had been having headaches since october but this one weekend was the worst. Nothing helped. I couldn't eat, sleep, drink, think…nothing. It was agony. I went back to the doctor and she treated me for a migraine, including a CT scan. They saw "something" and made me do an MRI. The next morning at 6:30am I was in with the neurologist being told I had a tumor. I am in the military so they medevac'ed me to Bethesda for treatment that day. The next morning I had my craniotomy. The tumor was in my right frontal lobe and was easy to remove. It all happened so fast! i was assured by my oncologist that there was nothing we could have done to catch this any sooner. It just was unforeseeable and against the odds. Lucky me.
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- January 1, 2012 at 4:16 pm
Hi Brenda,
Happy New Year, and I pray that the new treatments work for you for many, many years!!
Your story is so scary to me, as I have been diagnosed with 2 in-situs, and told that I am "cured". Did your doctors explain how you could go from in-situ to Stage 4?? Do they think that maybe you have another yet undiscovered primary somewhere?
Why is there no real follow-up recommended for in-situs other than regular derm visits???
-
- January 2, 2012 at 1:39 am
i too have concerns about what the future may hold. Yes, the word cancer is scary enough by itself, then when we look up the word MELANOMA on the internet and maybe then learn from statistics and a general oncologist that we stand almost no chance of seeing next summer, life does get rather scary, more so for the ones we love than even for ourselves.
As you can see from my profile, after being misdiagnosed for 3 1/2 years, then being told that the odds were against me being here six months in the future, I quit thinking I am a statistic. (P.S. I went to stage Iv within 8 months of my initial diagnosis and have not been NED (No Evidence of Disease -by scans) since becoming stage IV in February 2007. i would love to be NED as some of my friends on this MPIP BB are, but I am still enjoying life and adding new grandkids regularly. I "work the problem" as a great guy I met here says to do. (He's been active at the Stage IV level for 15 years now!)
I have learned much (more than I ever wanted to know in previous years) and have found things that I have felt were right for me and have been hanging around here much longer than the 2-6 months probability I was given in 2007. My wife says old Marines are hard to get rid of!While this is often a deadly disease at stage IV, if one surrenders to paranoia, melanoma has already won, follow up on what you FEEL, learn to appreciate each day, and love those close to you. No man knows the future, but more is being learned daily about melanoma.
Brain tumors scar us all, but I have been amazed at the contacts here that have survived even multiple brain tumors, some for many years and still remaining NED.
Live life and be vigilant. (watchout about going hosreback riding!)
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- January 2, 2012 at 1:39 am
i too have concerns about what the future may hold. Yes, the word cancer is scary enough by itself, then when we look up the word MELANOMA on the internet and maybe then learn from statistics and a general oncologist that we stand almost no chance of seeing next summer, life does get rather scary, more so for the ones we love than even for ourselves.
As you can see from my profile, after being misdiagnosed for 3 1/2 years, then being told that the odds were against me being here six months in the future, I quit thinking I am a statistic. (P.S. I went to stage Iv within 8 months of my initial diagnosis and have not been NED (No Evidence of Disease -by scans) since becoming stage IV in February 2007. i would love to be NED as some of my friends on this MPIP BB are, but I am still enjoying life and adding new grandkids regularly. I "work the problem" as a great guy I met here says to do. (He's been active at the Stage IV level for 15 years now!)
I have learned much (more than I ever wanted to know in previous years) and have found things that I have felt were right for me and have been hanging around here much longer than the 2-6 months probability I was given in 2007. My wife says old Marines are hard to get rid of!While this is often a deadly disease at stage IV, if one surrenders to paranoia, melanoma has already won, follow up on what you FEEL, learn to appreciate each day, and love those close to you. No man knows the future, but more is being learned daily about melanoma.
Brain tumors scar us all, but I have been amazed at the contacts here that have survived even multiple brain tumors, some for many years and still remaining NED.
Live life and be vigilant. (watchout about going hosreback riding!)
-
- January 2, 2012 at 1:39 am
i too have concerns about what the future may hold. Yes, the word cancer is scary enough by itself, then when we look up the word MELANOMA on the internet and maybe then learn from statistics and a general oncologist that we stand almost no chance of seeing next summer, life does get rather scary, more so for the ones we love than even for ourselves.
As you can see from my profile, after being misdiagnosed for 3 1/2 years, then being told that the odds were against me being here six months in the future, I quit thinking I am a statistic. (P.S. I went to stage Iv within 8 months of my initial diagnosis and have not been NED (No Evidence of Disease -by scans) since becoming stage IV in February 2007. i would love to be NED as some of my friends on this MPIP BB are, but I am still enjoying life and adding new grandkids regularly. I "work the problem" as a great guy I met here says to do. (He's been active at the Stage IV level for 15 years now!)
I have learned much (more than I ever wanted to know in previous years) and have found things that I have felt were right for me and have been hanging around here much longer than the 2-6 months probability I was given in 2007. My wife says old Marines are hard to get rid of!While this is often a deadly disease at stage IV, if one surrenders to paranoia, melanoma has already won, follow up on what you FEEL, learn to appreciate each day, and love those close to you. No man knows the future, but more is being learned daily about melanoma.
Brain tumors scar us all, but I have been amazed at the contacts here that have survived even multiple brain tumors, some for many years and still remaining NED.
Live life and be vigilant. (watchout about going hosreback riding!)
-
- January 3, 2012 at 1:11 am
Hi Brenda,
For me, the feeling of shock is still there, and it's been over a year. I'm not stage IV, but IIIC.
Last time I saw my derm, I started crying and said "I still can't believe that this stuff on my face can kill me." Some days, it is really is just so hard to wrap my brain around. Most days I don't cry, though, and I try to stay as positive. Being with my famiy and friends and working (I never thought I'd say that!) all help a lot. And you have 2 little ones to take care of; you'll be positive for them.
I'm lucky in many ways, I have seen my children grow to "self-sufficient" (ages 22 and 24), although the "self-sufficient" part is sometimes debatable. So my goal is to see grandchildren! No pressure on my kids, LOL. Unfortunately, my husband has liver disease and usually I take care of him. This past year, he has been my rock, for which I am very grateful.
As another poster said here, 2011 was an amazing year in which 2 new drugs were approved, and may 2012 be the year we're all NED!
all the best,
karen
Hey, JerryfromFauk, NCIS is my favorite show…there's no such as a "former" Marine, right?
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- January 3, 2012 at 2:37 am
That's what I keep telling a goodlooking friend of mine on here (great personality too.) She keeps referring to her husband as a former Marine! Love the Gunny. Remember one chewing out an officier one time! It did straighten the Louey out.
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- January 3, 2012 at 3:29 am
Sorry to hear you have this dreadful disease…that is quite a shock and hopefully you have people you can talk to and surrounded with loving hearts…and yes…you can have 'clean margins' and years later the da**n sh+t roams somewhere else…that's what makes Mel mal.
In my experience the best thing to do is educate yourself…find out all available treatments and effective drug trials. Get yourself genetically tested for melanoma mutations. If you are Braf+ you can take Zelboraf as it will cross blood-brain barrier (not many drugs do-temodor (sp) is one that is not mutation specific)…Mek inhibitors also cross blood-brain barrier..
.DON"T LOOK AT STATISTICS…your condition is grave, but knowing there is hope and new treatments out there has changed the scene…
GET AS MUCH KNOWLEDGE AS YOU CAN HANDLE…better yet, get someone else to do it for you right now…someone calm, cool, collected…People are going to read some stupid news article and insist you start this or that drug immediately…that is why you have to have a GOOD RESEARCHER to help you…i like to watch the webinars on Melanoma Int'l…(yes, i go there folks)…that is helpful for me.
GET a MELANOMA SPECIALIST, not just any ONCOLOGIST…go to the BEST Melanoma Hospital in your area and consider going to sloan-kettering, moffitt, md anderson for a second opinion.
ASK and write down questions…YOU SHOULD have a LIST of them and your MEL ONC should answere EVERY ONE of them before you leave.
hope this helps
boots
non-primary, stage 4
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- January 3, 2012 at 3:51 am
Boots,
Thank you for your words and your support. I am trying everything to not absorb the negativity that statistics provide. It is very scary and I am hoping that there are treatments that will be able to get this out of my body completely. So far, we haven't found other mets…but still have some more tests to go through first. But, other than radiation (SRS), there has not been any other discussion of other treatments. I don't know if that is good or bad. My oncologist (Dr Lai at Bethesda NMMC) is transferring back to NIH and so I will have a new oncologist when I go back for treatment. They are consulting with Dr Rosenburg at NIH (I saw his name in your profile) and hopefully they will let me know something when I go back in a week or two. With my insurance (Tricare/Humana), I don't know how much doctor shopping I am allowed to do…but, from what I am told the NIH is the best place to go along with the folks at Bethesda. So far, I have been happy but it has only been 3 weeks.
I do have a great family and my husband to help me through this. My sister is a great researcher as she had non-Hodgkins Lymphoma in 2006 and she learned how to get completely educated on these things. But, that will scare her too! I think that as we all learn more about this and go through the process we will be able to make decisions without overwhelming ourselves with the scary stuff. At least that is my hope!!! Because if i read what is out there too much, I won't be hear for my youngest son's first birthday…and that is just too much to bear right now! LOL!
Again, thank you for your support!
Brenda
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- January 3, 2012 at 4:05 am
Brenda,
My mel specialist has also not given me any treatments then do the SRS. His thought is that the rest of the scan is NED. He gave me statistics with temador, braf (I am positive) and ippi to go across the brain. He is not against doing those possibilities if needed but would rather not use this. The issue I've had is because of bleeding and a large tumor (it was deep) I was put on steroids. It's now 3 months ago and while the tumor is shrinking I now have no immune system. I am weaning and on the last 2 weeks. Tomorrow is my scans so this really worries me.
It is great that your Dr is being consulted with Dr Rosenburg. However, he only has trials if you have the hla012 blood factor – at least to my knowledge. It sounds like they reacted quickly when they did discover your brain tumor.
I have been stage IV now since 06 with many recurrances in different places of the body.
Wish you the best,
Linda
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- January 3, 2012 at 4:05 am
Brenda,
My mel specialist has also not given me any treatments then do the SRS. His thought is that the rest of the scan is NED. He gave me statistics with temador, braf (I am positive) and ippi to go across the brain. He is not against doing those possibilities if needed but would rather not use this. The issue I've had is because of bleeding and a large tumor (it was deep) I was put on steroids. It's now 3 months ago and while the tumor is shrinking I now have no immune system. I am weaning and on the last 2 weeks. Tomorrow is my scans so this really worries me.
It is great that your Dr is being consulted with Dr Rosenburg. However, he only has trials if you have the hla012 blood factor – at least to my knowledge. It sounds like they reacted quickly when they did discover your brain tumor.
I have been stage IV now since 06 with many recurrances in different places of the body.
Wish you the best,
Linda
-
- January 3, 2012 at 4:05 am
Brenda,
My mel specialist has also not given me any treatments then do the SRS. His thought is that the rest of the scan is NED. He gave me statistics with temador, braf (I am positive) and ippi to go across the brain. He is not against doing those possibilities if needed but would rather not use this. The issue I've had is because of bleeding and a large tumor (it was deep) I was put on steroids. It's now 3 months ago and while the tumor is shrinking I now have no immune system. I am weaning and on the last 2 weeks. Tomorrow is my scans so this really worries me.
It is great that your Dr is being consulted with Dr Rosenburg. However, he only has trials if you have the hla012 blood factor – at least to my knowledge. It sounds like they reacted quickly when they did discover your brain tumor.
I have been stage IV now since 06 with many recurrances in different places of the body.
Wish you the best,
Linda
-
- January 3, 2012 at 3:51 am
Boots,
Thank you for your words and your support. I am trying everything to not absorb the negativity that statistics provide. It is very scary and I am hoping that there are treatments that will be able to get this out of my body completely. So far, we haven't found other mets…but still have some more tests to go through first. But, other than radiation (SRS), there has not been any other discussion of other treatments. I don't know if that is good or bad. My oncologist (Dr Lai at Bethesda NMMC) is transferring back to NIH and so I will have a new oncologist when I go back for treatment. They are consulting with Dr Rosenburg at NIH (I saw his name in your profile) and hopefully they will let me know something when I go back in a week or two. With my insurance (Tricare/Humana), I don't know how much doctor shopping I am allowed to do…but, from what I am told the NIH is the best place to go along with the folks at Bethesda. So far, I have been happy but it has only been 3 weeks.
I do have a great family and my husband to help me through this. My sister is a great researcher as she had non-Hodgkins Lymphoma in 2006 and she learned how to get completely educated on these things. But, that will scare her too! I think that as we all learn more about this and go through the process we will be able to make decisions without overwhelming ourselves with the scary stuff. At least that is my hope!!! Because if i read what is out there too much, I won't be hear for my youngest son's first birthday…and that is just too much to bear right now! LOL!
Again, thank you for your support!
Brenda
-
- January 3, 2012 at 3:51 am
Boots,
Thank you for your words and your support. I am trying everything to not absorb the negativity that statistics provide. It is very scary and I am hoping that there are treatments that will be able to get this out of my body completely. So far, we haven't found other mets…but still have some more tests to go through first. But, other than radiation (SRS), there has not been any other discussion of other treatments. I don't know if that is good or bad. My oncologist (Dr Lai at Bethesda NMMC) is transferring back to NIH and so I will have a new oncologist when I go back for treatment. They are consulting with Dr Rosenburg at NIH (I saw his name in your profile) and hopefully they will let me know something when I go back in a week or two. With my insurance (Tricare/Humana), I don't know how much doctor shopping I am allowed to do…but, from what I am told the NIH is the best place to go along with the folks at Bethesda. So far, I have been happy but it has only been 3 weeks.
I do have a great family and my husband to help me through this. My sister is a great researcher as she had non-Hodgkins Lymphoma in 2006 and she learned how to get completely educated on these things. But, that will scare her too! I think that as we all learn more about this and go through the process we will be able to make decisions without overwhelming ourselves with the scary stuff. At least that is my hope!!! Because if i read what is out there too much, I won't be hear for my youngest son's first birthday…and that is just too much to bear right now! LOL!
Again, thank you for your support!
Brenda
-
- January 3, 2012 at 3:29 am
Sorry to hear you have this dreadful disease…that is quite a shock and hopefully you have people you can talk to and surrounded with loving hearts…and yes…you can have 'clean margins' and years later the da**n sh+t roams somewhere else…that's what makes Mel mal.
In my experience the best thing to do is educate yourself…find out all available treatments and effective drug trials. Get yourself genetically tested for melanoma mutations. If you are Braf+ you can take Zelboraf as it will cross blood-brain barrier (not many drugs do-temodor (sp) is one that is not mutation specific)…Mek inhibitors also cross blood-brain barrier..
.DON"T LOOK AT STATISTICS…your condition is grave, but knowing there is hope and new treatments out there has changed the scene…
GET AS MUCH KNOWLEDGE AS YOU CAN HANDLE…better yet, get someone else to do it for you right now…someone calm, cool, collected…People are going to read some stupid news article and insist you start this or that drug immediately…that is why you have to have a GOOD RESEARCHER to help you…i like to watch the webinars on Melanoma Int'l…(yes, i go there folks)…that is helpful for me.
GET a MELANOMA SPECIALIST, not just any ONCOLOGIST…go to the BEST Melanoma Hospital in your area and consider going to sloan-kettering, moffitt, md anderson for a second opinion.
ASK and write down questions…YOU SHOULD have a LIST of them and your MEL ONC should answere EVERY ONE of them before you leave.
hope this helps
boots
non-primary, stage 4
-
- January 3, 2012 at 3:29 am
Sorry to hear you have this dreadful disease…that is quite a shock and hopefully you have people you can talk to and surrounded with loving hearts…and yes…you can have 'clean margins' and years later the da**n sh+t roams somewhere else…that's what makes Mel mal.
In my experience the best thing to do is educate yourself…find out all available treatments and effective drug trials. Get yourself genetically tested for melanoma mutations. If you are Braf+ you can take Zelboraf as it will cross blood-brain barrier (not many drugs do-temodor (sp) is one that is not mutation specific)…Mek inhibitors also cross blood-brain barrier..
.DON"T LOOK AT STATISTICS…your condition is grave, but knowing there is hope and new treatments out there has changed the scene…
GET AS MUCH KNOWLEDGE AS YOU CAN HANDLE…better yet, get someone else to do it for you right now…someone calm, cool, collected…People are going to read some stupid news article and insist you start this or that drug immediately…that is why you have to have a GOOD RESEARCHER to help you…i like to watch the webinars on Melanoma Int'l…(yes, i go there folks)…that is helpful for me.
GET a MELANOMA SPECIALIST, not just any ONCOLOGIST…go to the BEST Melanoma Hospital in your area and consider going to sloan-kettering, moffitt, md anderson for a second opinion.
ASK and write down questions…YOU SHOULD have a LIST of them and your MEL ONC should answere EVERY ONE of them before you leave.
hope this helps
boots
non-primary, stage 4
-
- January 3, 2012 at 2:37 am
That's what I keep telling a goodlooking friend of mine on here (great personality too.) She keeps referring to her husband as a former Marine! Love the Gunny. Remember one chewing out an officier one time! It did straighten the Louey out.
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- January 3, 2012 at 2:37 am
That's what I keep telling a goodlooking friend of mine on here (great personality too.) She keeps referring to her husband as a former Marine! Love the Gunny. Remember one chewing out an officier one time! It did straighten the Louey out.
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- January 3, 2012 at 1:11 am
Hi Brenda,
For me, the feeling of shock is still there, and it's been over a year. I'm not stage IV, but IIIC.
Last time I saw my derm, I started crying and said "I still can't believe that this stuff on my face can kill me." Some days, it is really is just so hard to wrap my brain around. Most days I don't cry, though, and I try to stay as positive. Being with my famiy and friends and working (I never thought I'd say that!) all help a lot. And you have 2 little ones to take care of; you'll be positive for them.
I'm lucky in many ways, I have seen my children grow to "self-sufficient" (ages 22 and 24), although the "self-sufficient" part is sometimes debatable. So my goal is to see grandchildren! No pressure on my kids, LOL. Unfortunately, my husband has liver disease and usually I take care of him. This past year, he has been my rock, for which I am very grateful.
As another poster said here, 2011 was an amazing year in which 2 new drugs were approved, and may 2012 be the year we're all NED!
all the best,
karen
Hey, JerryfromFauk, NCIS is my favorite show…there's no such as a "former" Marine, right?
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- January 3, 2012 at 1:11 am
Hi Brenda,
For me, the feeling of shock is still there, and it's been over a year. I'm not stage IV, but IIIC.
Last time I saw my derm, I started crying and said "I still can't believe that this stuff on my face can kill me." Some days, it is really is just so hard to wrap my brain around. Most days I don't cry, though, and I try to stay as positive. Being with my famiy and friends and working (I never thought I'd say that!) all help a lot. And you have 2 little ones to take care of; you'll be positive for them.
I'm lucky in many ways, I have seen my children grow to "self-sufficient" (ages 22 and 24), although the "self-sufficient" part is sometimes debatable. So my goal is to see grandchildren! No pressure on my kids, LOL. Unfortunately, my husband has liver disease and usually I take care of him. This past year, he has been my rock, for which I am very grateful.
As another poster said here, 2011 was an amazing year in which 2 new drugs were approved, and may 2012 be the year we're all NED!
all the best,
karen
Hey, JerryfromFauk, NCIS is my favorite show…there's no such as a "former" Marine, right?
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- January 3, 2012 at 3:29 am
Jerry,
Wow, after reading your profile, I am astounded by all that you have been through! My goodness! You are really unstoppable! It amazes me how quickly the melanoma can spread and cause so many issues. I appreciate your support and words of wisdom. I try very hard to stay postitive and realize that while it is stage 4 it is not the end of me at this point in time. I am lucky in that so far there are no other mets. I am hoping that stays the case. And I am also hoping that you and all the others on this board get and stay NED!
Brenda
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- January 3, 2012 at 7:57 am
Brenda,
Actually I believe that I am lucky to have found the great group of people on the MRF and the MIF (Catherine Poole – www.melanomaintl.org/ is a great gal that has been much help to me and many others here as well. ) Yes, many of us go to her site as well!)
I have had a much easier time than so many here. I researched, talked to different patients and Oncologists, learned that in general most chemotherapy and radiation has little effect on most peoples general mestastatic melanoma. I wanted what would cause my family (and ME) the least side effects while providing the best quality of life. I have done things that some well know melanoma oncologists have thought were not smart moves, but they have worked for me. After all the misdiagnoses I finally found a great team of well known melanoma Specialists at UVA that actually look at what patients research and say and are willing to learn from others. They don't even believe that they automatically KNOW IT ALL!
-
- January 3, 2012 at 7:57 am
Brenda,
Actually I believe that I am lucky to have found the great group of people on the MRF and the MIF (Catherine Poole – www.melanomaintl.org/ is a great gal that has been much help to me and many others here as well. ) Yes, many of us go to her site as well!)
I have had a much easier time than so many here. I researched, talked to different patients and Oncologists, learned that in general most chemotherapy and radiation has little effect on most peoples general mestastatic melanoma. I wanted what would cause my family (and ME) the least side effects while providing the best quality of life. I have done things that some well know melanoma oncologists have thought were not smart moves, but they have worked for me. After all the misdiagnoses I finally found a great team of well known melanoma Specialists at UVA that actually look at what patients research and say and are willing to learn from others. They don't even believe that they automatically KNOW IT ALL!
-
- January 3, 2012 at 7:57 am
Brenda,
Actually I believe that I am lucky to have found the great group of people on the MRF and the MIF (Catherine Poole – www.melanomaintl.org/ is a great gal that has been much help to me and many others here as well. ) Yes, many of us go to her site as well!)
I have had a much easier time than so many here. I researched, talked to different patients and Oncologists, learned that in general most chemotherapy and radiation has little effect on most peoples general mestastatic melanoma. I wanted what would cause my family (and ME) the least side effects while providing the best quality of life. I have done things that some well know melanoma oncologists have thought were not smart moves, but they have worked for me. After all the misdiagnoses I finally found a great team of well known melanoma Specialists at UVA that actually look at what patients research and say and are willing to learn from others. They don't even believe that they automatically KNOW IT ALL!
-
- January 3, 2012 at 3:29 am
Jerry,
Wow, after reading your profile, I am astounded by all that you have been through! My goodness! You are really unstoppable! It amazes me how quickly the melanoma can spread and cause so many issues. I appreciate your support and words of wisdom. I try very hard to stay postitive and realize that while it is stage 4 it is not the end of me at this point in time. I am lucky in that so far there are no other mets. I am hoping that stays the case. And I am also hoping that you and all the others on this board get and stay NED!
Brenda
-
- January 3, 2012 at 3:29 am
Jerry,
Wow, after reading your profile, I am astounded by all that you have been through! My goodness! You are really unstoppable! It amazes me how quickly the melanoma can spread and cause so many issues. I appreciate your support and words of wisdom. I try very hard to stay postitive and realize that while it is stage 4 it is not the end of me at this point in time. I am lucky in that so far there are no other mets. I am hoping that stays the case. And I am also hoping that you and all the others on this board get and stay NED!
Brenda
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- January 3, 2012 at 7:07 pm
I'm not on MPIP often these days, but when I am here I do try to give hope as I remember what it felt like to be staring down a stage VI diagnosis. My husband is a stage VI survivor – 6.5 years now! Details are in the profile and although Ken didn't have brain tumors he did have widespread disease, just goes to show you that there is always hope and it is possible to have a durable remission from Stage VI melanoma.
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- January 3, 2012 at 7:07 pm
I'm not on MPIP often these days, but when I am here I do try to give hope as I remember what it felt like to be staring down a stage VI diagnosis. My husband is a stage VI survivor – 6.5 years now! Details are in the profile and although Ken didn't have brain tumors he did have widespread disease, just goes to show you that there is always hope and it is possible to have a durable remission from Stage VI melanoma.
-
- January 3, 2012 at 7:07 pm
I'm not on MPIP often these days, but when I am here I do try to give hope as I remember what it felt like to be staring down a stage VI diagnosis. My husband is a stage VI survivor – 6.5 years now! Details are in the profile and although Ken didn't have brain tumors he did have widespread disease, just goes to show you that there is always hope and it is possible to have a durable remission from Stage VI melanoma.
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- January 3, 2012 at 11:39 pm
A fellow I met last year, Rick, Had his last/only melanoma treatment after surgery, in 1991. He has been NED for 20 years now. (He likes IL-2.) Yes it is possible!
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- January 3, 2012 at 11:39 pm
A fellow I met last year, Rick, Had his last/only melanoma treatment after surgery, in 1991. He has been NED for 20 years now. (He likes IL-2.) Yes it is possible!
-
- January 3, 2012 at 11:39 pm
A fellow I met last year, Rick, Had his last/only melanoma treatment after surgery, in 1991. He has been NED for 20 years now. (He likes IL-2.) Yes it is possible!
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- January 5, 2012 at 1:22 pm
Brenda
My thoughts and prayers are with you. Do not give up. Keep going for more opinions until you find one or ones that work. Woark hard on taking care of yoursefl right now – be selfish even – so that you can be there for our chidlren. I am doing the same (stage 4 with 3 brain mets) and 3 young children ages 8. 6 and 3.
David
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- January 5, 2012 at 1:22 pm
Brenda
My thoughts and prayers are with you. Do not give up. Keep going for more opinions until you find one or ones that work. Woark hard on taking care of yoursefl right now – be selfish even – so that you can be there for our chidlren. I am doing the same (stage 4 with 3 brain mets) and 3 young children ages 8. 6 and 3.
David
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- January 5, 2012 at 1:22 pm
Brenda
My thoughts and prayers are with you. Do not give up. Keep going for more opinions until you find one or ones that work. Woark hard on taking care of yoursefl right now – be selfish even – so that you can be there for our chidlren. I am doing the same (stage 4 with 3 brain mets) and 3 young children ages 8. 6 and 3.
David
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Tagged: cutaneous melanoma
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