› Forums › General Melanoma Community › Anal Melanoma
- This topic has 70 replies, 9 voices, and was last updated 12 years, 9 months ago by JerryfromFauq.
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- August 21, 2011 at 4:44 pm
Hi
This is my first experience with a melanoma site. I was diagnosed with Anal Melanoma in March of this year. After many trips to the Doctors it was determined that the cancer has not spread at this time. My lesion was quite big on the melanoma scale 6.75 mm Can anyone share their experience with stage one Anal Melanoma?
Thank you,
Jeannine
Hi
This is my first experience with a melanoma site. I was diagnosed with Anal Melanoma in March of this year. After many trips to the Doctors it was determined that the cancer has not spread at this time. My lesion was quite big on the melanoma scale 6.75 mm Can anyone share their experience with stage one Anal Melanoma?
Thank you,
Jeannine
- Replies
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- August 21, 2011 at 6:18 pm
Hi Jeannine,
I am so sorry that you have been diagnosed with anal melanoma. I can't say I know anything about it, but I can say that you have found a great place for education, support, and a lot of folks who can share their knowledge and personal experiences. My suggestion would be to check the box that will alert you of all posts in the bulletin board, and you will receive a wealth of information regarding treatment options. Most of the posts will happen during the weekdays.
Hang in there and stay positive!
Cristy, Stage IV
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- August 21, 2011 at 6:18 pm
Hi Jeannine,
I am so sorry that you have been diagnosed with anal melanoma. I can't say I know anything about it, but I can say that you have found a great place for education, support, and a lot of folks who can share their knowledge and personal experiences. My suggestion would be to check the box that will alert you of all posts in the bulletin board, and you will receive a wealth of information regarding treatment options. Most of the posts will happen during the weekdays.
Hang in there and stay positive!
Cristy, Stage IV
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- August 21, 2011 at 8:26 pm
Jeannine. Welcome to this board, a source of good information and support. My husband was diagnosed with mucosal anal melanoma in January 2010, and also goes to Dana Farber for monitoring and treatment. You can review his profile and some of my past posts for further detail. As you may be aware, mucosal melanoma is a different breed, and most doctors don’t stage it the same way. Both of his doctors at Sloan Kettering and Dana Farber were reluctant to stage him, based on the nature of mucosal melanoma. I considered Phil stage 3 at diagnosis because he had his tumor removed (9mm) with clear margins, no lymph node involvement, and clean Pet and Cat scans. He has recently moved to stage 4 with a lung tumor, which was successfully resected this July.
Since you are treated by Dr Hodi, I am sure your tumor was tested for c-kit, but be aware that this mutation is less common in mucosal melanomas then originally thought. If you have c-kit, than Gleevec could be a treatment if needed in your future. Good luck to you, and my best piece of advice would be to stay on top of your scans, and that way if something did reoccur you can address it quickly. My husband is currently doing very well, and we hope and pray for the best! God bless! Valerie (Phil’s wife)-
- August 22, 2011 at 2:25 am
Hi Valerie, I have been tested for both the BRAF and the kit gene and I have neither. Dr. Hodi is the best and because of the team of Doctors at Dana Farber my diagnosis was changed and I was told that I didn't need any further treatment. I went from hearing that my lymph nodes had melanoma cells in them, that my Surgical Oncologist and Oncologist at my local hospital had not seen my type of cancer but was told that I would need further surgery to remove more lymph nodes, radiation and interferon to 5 days later not needing anything but regular check ups. It was quite a blessing and a shock. The original pathologist stood by his diagnosis until my slides were sent to 3 other pathologist at the same hospital and back to Brigham and Women's for another review. When they all concurred with the revised interpretation the original pathologist changed the report.
I am so glad that your husband is doing well. How did they find that the cancer was in his lung? Does he have the kit or the BRAF gene? Is he or has he ever received any type of radiation or interferon? Thank you so much for your willingness to write me. I will double check your posts just in case you have the answers to my questions already.
I am trying so hard not to obsess about the cancer. I really do have a "everything happens for a reason" attitude and have faith that I will be just fine or that there will be some good that comes out of what ever happens.
Have a great week!
Jeannine
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- August 22, 2011 at 3:16 am
Jeannine My husband does not have either the Ckit or BRAF mutation. He was doing well for 18 months, and on a regularly scheduled scan at Dana Farber in July, they found his lung tumor, and he had his right middle lobe removed. He is currently NED. Please feel free to e-mail me directly, [email protected] , if you have further questions. My husband did both radiation and interferon, with our local oncologist in Saratoga NY, and Dr Hodi was aware of his treatments and understood that we needed to do something and it was our personal choice. While, Phil and you have some unique things in common, mucosal anal melanoma and go to Dana Farber, one thing I have learned is that everyone's journey with melanoma is their own story. I could relate our experience in further detail through email, if you are interested.
Finally, just know that I never in a million years would have thought I would be doing okay with my husband having surgery to remove part of his lung and moving to Stage 4, but we are holding our own. Phil works his job, and helps with our young children, and does all the normal stuff in our day to day lives. And, for that I am thankful, and I no longer take it for granted! Enjoy all the little moments and try hard not to obsess about cancer, it does get a little easier as times goes on. Take Care! Valerie
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- August 22, 2011 at 3:16 am
Jeannine My husband does not have either the Ckit or BRAF mutation. He was doing well for 18 months, and on a regularly scheduled scan at Dana Farber in July, they found his lung tumor, and he had his right middle lobe removed. He is currently NED. Please feel free to e-mail me directly, [email protected] , if you have further questions. My husband did both radiation and interferon, with our local oncologist in Saratoga NY, and Dr Hodi was aware of his treatments and understood that we needed to do something and it was our personal choice. While, Phil and you have some unique things in common, mucosal anal melanoma and go to Dana Farber, one thing I have learned is that everyone's journey with melanoma is their own story. I could relate our experience in further detail through email, if you are interested.
Finally, just know that I never in a million years would have thought I would be doing okay with my husband having surgery to remove part of his lung and moving to Stage 4, but we are holding our own. Phil works his job, and helps with our young children, and does all the normal stuff in our day to day lives. And, for that I am thankful, and I no longer take it for granted! Enjoy all the little moments and try hard not to obsess about cancer, it does get a little easier as times goes on. Take Care! Valerie
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- August 22, 2011 at 2:25 am
Hi Valerie, I have been tested for both the BRAF and the kit gene and I have neither. Dr. Hodi is the best and because of the team of Doctors at Dana Farber my diagnosis was changed and I was told that I didn't need any further treatment. I went from hearing that my lymph nodes had melanoma cells in them, that my Surgical Oncologist and Oncologist at my local hospital had not seen my type of cancer but was told that I would need further surgery to remove more lymph nodes, radiation and interferon to 5 days later not needing anything but regular check ups. It was quite a blessing and a shock. The original pathologist stood by his diagnosis until my slides were sent to 3 other pathologist at the same hospital and back to Brigham and Women's for another review. When they all concurred with the revised interpretation the original pathologist changed the report.
I am so glad that your husband is doing well. How did they find that the cancer was in his lung? Does he have the kit or the BRAF gene? Is he or has he ever received any type of radiation or interferon? Thank you so much for your willingness to write me. I will double check your posts just in case you have the answers to my questions already.
I am trying so hard not to obsess about the cancer. I really do have a "everything happens for a reason" attitude and have faith that I will be just fine or that there will be some good that comes out of what ever happens.
Have a great week!
Jeannine
.
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- August 21, 2011 at 8:26 pm
Jeannine. Welcome to this board, a source of good information and support. My husband was diagnosed with mucosal anal melanoma in January 2010, and also goes to Dana Farber for monitoring and treatment. You can review his profile and some of my past posts for further detail. As you may be aware, mucosal melanoma is a different breed, and most doctors don’t stage it the same way. Both of his doctors at Sloan Kettering and Dana Farber were reluctant to stage him, based on the nature of mucosal melanoma. I considered Phil stage 3 at diagnosis because he had his tumor removed (9mm) with clear margins, no lymph node involvement, and clean Pet and Cat scans. He has recently moved to stage 4 with a lung tumor, which was successfully resected this July.
Since you are treated by Dr Hodi, I am sure your tumor was tested for c-kit, but be aware that this mutation is less common in mucosal melanomas then originally thought. If you have c-kit, than Gleevec could be a treatment if needed in your future. Good luck to you, and my best piece of advice would be to stay on top of your scans, and that way if something did reoccur you can address it quickly. My husband is currently doing very well, and we hope and pray for the best! God bless! Valerie (Phil’s wife) -
- August 22, 2011 at 12:08 am
Welcome to the board. I hope you can get some answers. As Janner said on the OTB Jerry will be able to give you all kinds of info.l he's been dealing with anal mel for years and is stable. He is C-kit and on Gleevec.
Right now Jerry is driving to Colorado from Va welcome his 15th grandchild. Maybe when he stops at night he will check in. If not you might want to re-post in a few days. He has researched anal mel and will hopefully be able to guide you.
Linda
Stage IV since 06 Currently NED (no evidence of disease)
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- August 22, 2011 at 2:35 am
Hi Linda,
I am so glad that you are currently NED! How exciting for Jerry. I will be patient for him to return and don't want him to interrupt his trip. I am fine for right now and expect to be for a long time. Just on a journey to find successful stories since all of what I read on the internet is dismal. My Doctors have suggested that I "just live my life" but I'm a little Anal Retentive 🙂
There might be no exact answer since we are all different beings with totally different make ups and circumstances.
I think that I'm going to start organizing all my photos and creating scrap books for my kids. A project that I have been wanting to do for a long time. This might help me not to obsess too much about the cancer.
Thank you for your reply and be well!
Jeannine
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- August 22, 2011 at 2:35 am
Hi Linda,
I am so glad that you are currently NED! How exciting for Jerry. I will be patient for him to return and don't want him to interrupt his trip. I am fine for right now and expect to be for a long time. Just on a journey to find successful stories since all of what I read on the internet is dismal. My Doctors have suggested that I "just live my life" but I'm a little Anal Retentive 🙂
There might be no exact answer since we are all different beings with totally different make ups and circumstances.
I think that I'm going to start organizing all my photos and creating scrap books for my kids. A project that I have been wanting to do for a long time. This might help me not to obsess too much about the cancer.
Thank you for your reply and be well!
Jeannine
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- August 24, 2011 at 6:39 am
The Motel 6 would't let me log into the MPIP Suday night.
(Had tire trouble Saturday and only went about 198 miles that day!) ) Arrived in Colorado Springs Tuesday. Laura Downs, whose husband died from melanoma in May 2010 came over to visit us. She is a wonderful compassionate young lady with a delightful 2 year old daughter that is studyig to be an Oncological Nurse to help in the fight against what melanoma is doing to so many of our group. She was much appreciated by my wife last year when I was in the Denver and Springs hospitals. She was very helpful and gracious in spite of having just lost her husband and the father that loved his baby girl so much.I emailed Jean-9 tonight. and I understand her name here better now. My middle daughter whose huse I had the horse accidet at last year is also named Jeannine!
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- August 24, 2011 at 6:39 am
The Motel 6 would't let me log into the MPIP Suday night.
(Had tire trouble Saturday and only went about 198 miles that day!) ) Arrived in Colorado Springs Tuesday. Laura Downs, whose husband died from melanoma in May 2010 came over to visit us. She is a wonderful compassionate young lady with a delightful 2 year old daughter that is studyig to be an Oncological Nurse to help in the fight against what melanoma is doing to so many of our group. She was much appreciated by my wife last year when I was in the Denver and Springs hospitals. She was very helpful and gracious in spite of having just lost her husband and the father that loved his baby girl so much.I emailed Jean-9 tonight. and I understand her name here better now. My middle daughter whose huse I had the horse accidet at last year is also named Jeannine!
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- August 22, 2011 at 12:08 am
Welcome to the board. I hope you can get some answers. As Janner said on the OTB Jerry will be able to give you all kinds of info.l he's been dealing with anal mel for years and is stable. He is C-kit and on Gleevec.
Right now Jerry is driving to Colorado from Va welcome his 15th grandchild. Maybe when he stops at night he will check in. If not you might want to re-post in a few days. He has researched anal mel and will hopefully be able to guide you.
Linda
Stage IV since 06 Currently NED (no evidence of disease)
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- August 24, 2011 at 2:46 am
Hi Jeannine –
I was diagnosed with anal melanoma in June 2005. After two surgeries, snb and no metastis, I lived through 1 year of interferon and scans for the past 6 years.
As of now I remain NED and continue to have annual scans and bi-annual doctors visits.
I wanted to post for you to provide light at the end of the tunnel and hope. My son was going into the 8th grade when I was diagnosed and I prayed to survive until he graduated. When he was graduating, I amended my prayer to be here long enough to see him married and have children….we'll see. He is a sophomore in college now.
If you would like more details, feel free to email me.
Deb in CA (now Georgia)
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- August 24, 2011 at 2:46 am
Hi Jeannine –
I was diagnosed with anal melanoma in June 2005. After two surgeries, snb and no metastis, I lived through 1 year of interferon and scans for the past 6 years.
As of now I remain NED and continue to have annual scans and bi-annual doctors visits.
I wanted to post for you to provide light at the end of the tunnel and hope. My son was going into the 8th grade when I was diagnosed and I prayed to survive until he graduated. When he was graduating, I amended my prayer to be here long enough to see him married and have children….we'll see. He is a sophomore in college now.
If you would like more details, feel free to email me.
Deb in CA (now Georgia)
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- August 24, 2011 at 11:23 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:23 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:23 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:23 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:24 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:24 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:24 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 24, 2011 at 11:24 am
Hi Deb, Thank you SO much for your positive story. I plan to follow in your footsteps with the exception of Interferon. Dr. Hodi at Dana Farber did not recommend that I have that treatment given the stage of my cancer. I plan to revisit that decision when I go back for another visit in Oct.
Keep Strong and Well!!
Jeannine
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- August 30, 2011 at 4:14 am
Hi Jeannine,
My name is Jackie. I have been a registered member of this site for quite a while, but I'm pretty sure I've never posted.
As you already know, you are not alone in this journey. I was diagnosed in 7/08 with anal mucosal melanoma, stage IIIb. I thought I had a hemorrhoid. I had an APR (abdominal-peritoneal resection), with colostomy, total hyster, and lymph node dissection, with one positive node. I did have a year of interferon. I am happy to report that I have celebrated 3 years since my diagnosis. I feel wonderful.
I would like to offer you hope and encouragement. It is so hard when you're first diagnosed. It felt like it was all a dream. I hope that you have wonderful friends and family to surround and support you.
You will find good information here and people that can truly relate to your circumstance. Please feel free to ask me any questions about my journey
Blessings to you,
Jackie
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- September 3, 2011 at 9:19 pm
Hi Jackie,
I'm sorry to take so long to reply. This is the first chance I've had to log back in. Thank you so much for sharing your story. It means a lot to me to know that there are people out there living after being diagnosed with anal melanoma. CONGRATULATIONS on feeling wonderful. You have a very contagious attitude! You have gone through so much more than I had to go through.
If I could ask, how did you know what stage your cancer was?
Thank you again for reaching out to me. Have a fabulous Labor Day Weekend and blessings to you as well!!!
Jeannine
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- September 3, 2011 at 9:19 pm
Hi Jackie,
I'm sorry to take so long to reply. This is the first chance I've had to log back in. Thank you so much for sharing your story. It means a lot to me to know that there are people out there living after being diagnosed with anal melanoma. CONGRATULATIONS on feeling wonderful. You have a very contagious attitude! You have gone through so much more than I had to go through.
If I could ask, how did you know what stage your cancer was?
Thank you again for reaching out to me. Have a fabulous Labor Day Weekend and blessings to you as well!!!
Jeannine
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- September 3, 2011 at 9:19 pm
Hi Jackie,
I'm sorry to take so long to reply. This is the first chance I've had to log back in. Thank you so much for sharing your story. It means a lot to me to know that there are people out there living after being diagnosed with anal melanoma. CONGRATULATIONS on feeling wonderful. You have a very contagious attitude! You have gone through so much more than I had to go through.
If I could ask, how did you know what stage your cancer was?
Thank you again for reaching out to me. Have a fabulous Labor Day Weekend and blessings to you as well!!!
Jeannine
-
- September 3, 2011 at 9:19 pm
Hi Jackie,
I'm sorry to take so long to reply. This is the first chance I've had to log back in. Thank you so much for sharing your story. It means a lot to me to know that there are people out there living after being diagnosed with anal melanoma. CONGRATULATIONS on feeling wonderful. You have a very contagious attitude! You have gone through so much more than I had to go through.
If I could ask, how did you know what stage your cancer was?
Thank you again for reaching out to me. Have a fabulous Labor Day Weekend and blessings to you as well!!!
Jeannine
-
- September 4, 2011 at 6:12 am
I was told by the general surgeon that rremoved my first tumor that anal melanoma could not be staged. He didn't even follow up by cheking the lmph nodes. It is my impression that when (a cancer?) or at least melanoma reaches the nearby lymph nodes it is always then stage III and when it reaches distand site it becomes stage IV.
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- September 4, 2011 at 6:12 am
I was told by the general surgeon that rremoved my first tumor that anal melanoma could not be staged. He didn't even follow up by cheking the lmph nodes. It is my impression that when (a cancer?) or at least melanoma reaches the nearby lymph nodes it is always then stage III and when it reaches distand site it becomes stage IV.
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- September 4, 2011 at 11:52 pm
Thanks Jerry, I was told the same thing. I always wondered was my lesion so big (6.75 mm) because it was cancerous or was it cancerous because it was so big? I guess it's one of those questions like which came first the chicken or the egg???
The world may never know. I hope you are enjoying your Labor Day weekend!!
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- September 5, 2011 at 2:36 am
Mine was over 4 because during the 9 additional visits to Dr Thrasher, Jan (2003-2006) after the first one, he never again had me drop my drawers and neve looked at it again. Just kept saying "keep using Prep H". I've always wondered if it startd as a melanoma, or if the irritation it encountered in the nest 3 1/2 years led to the mutations. Now I tell people that if Prep H doesn't work in a short time to get to someone who will remove it and have a pathology exam run on it. Delay can be deadly!
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- September 5, 2011 at 2:36 am
Mine was over 4 because during the 9 additional visits to Dr Thrasher, Jan (2003-2006) after the first one, he never again had me drop my drawers and neve looked at it again. Just kept saying "keep using Prep H". I've always wondered if it startd as a melanoma, or if the irritation it encountered in the nest 3 1/2 years led to the mutations. Now I tell people that if Prep H doesn't work in a short time to get to someone who will remove it and have a pathology exam run on it. Delay can be deadly!
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- September 5, 2011 at 3:02 am
Hi Jeannine,
I hope that you are finding some peace since being in contact with "others of us."
I agree with Jerry about the staging. I was diagnosed at IIIB. This is my interpretation of it: I am a 3 because I had lymph node involvement, and B because, although it only involved one positive node, it was large. Hope that helps answer your question.
As far as which came first (the cancer or the size?) I would guess the cancer. But that is just a guess.
I was diagnosed at age 46. I am now 49. I'm married with 2 sons that are both starting their first teaching jobs. They are 22 and 24.
As Deb said, I have also bargained with God and prayer saying, "Please just let me see my kids get through college, then please just let me see them find love, and please just let me see them find jobs." I keep revising my prayers too! I want to be here for a long time yet. I'd like to see grandchildren some day (down the road!)
I am so glad that Phil is back to work and enjoying time with the kids.
I find it so energizing to hear about other's victories over this obstacle.
Be well.
God's blessings to you,
Jackie
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- September 7, 2011 at 1:10 am
Hi Jackie,
I am finding so much comfort in knowing that you all are out there still around to tell your powerful stories.
I have a tremendous amount of faith that everything happens for a reason and sometimes we are not the center of the reason.
It's funny when I go to serve at church there is this one older woman that I have known for years (her husband died of pancreatic cancer a few years back) who always has such profound statements. A few weeks ago out of the blue she congratulated for being "cancer free". This past weekend, again out of the blue, said "you got your miracle didn't you?) I think God is trying to tell me something 🙂 Every day is a blessing and a miracle!
Wishing everyone clean scans!
Jeannine
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- September 7, 2011 at 2:52 am
Hi Jeannine,
I too believe that everything happens for a reason, and we may never know the reasons why.
I like the lady at church! How wonderful and encouraging to have her acknowledge your victories. Give her some pom poms, 'cause you've got a cheerleader!
Since being diagnosed, things have just become clearer for me. Every blessing is a miracle, and everday is too. I am so much more grateful for so many more things.
I have learned so much about myself and my christian relationships, including that with our Saviour.
Be Well,
♥ Jackie
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- September 7, 2011 at 2:52 am
Hi Jeannine,
I too believe that everything happens for a reason, and we may never know the reasons why.
I like the lady at church! How wonderful and encouraging to have her acknowledge your victories. Give her some pom poms, 'cause you've got a cheerleader!
Since being diagnosed, things have just become clearer for me. Every blessing is a miracle, and everday is too. I am so much more grateful for so many more things.
I have learned so much about myself and my christian relationships, including that with our Saviour.
Be Well,
♥ Jackie
-
- September 7, 2011 at 1:10 am
Hi Jackie,
I am finding so much comfort in knowing that you all are out there still around to tell your powerful stories.
I have a tremendous amount of faith that everything happens for a reason and sometimes we are not the center of the reason.
It's funny when I go to serve at church there is this one older woman that I have known for years (her husband died of pancreatic cancer a few years back) who always has such profound statements. A few weeks ago out of the blue she congratulated for being "cancer free". This past weekend, again out of the blue, said "you got your miracle didn't you?) I think God is trying to tell me something 🙂 Every day is a blessing and a miracle!
Wishing everyone clean scans!
Jeannine
-
- September 5, 2011 at 3:02 am
Hi Jeannine,
I hope that you are finding some peace since being in contact with "others of us."
I agree with Jerry about the staging. I was diagnosed at IIIB. This is my interpretation of it: I am a 3 because I had lymph node involvement, and B because, although it only involved one positive node, it was large. Hope that helps answer your question.
As far as which came first (the cancer or the size?) I would guess the cancer. But that is just a guess.
I was diagnosed at age 46. I am now 49. I'm married with 2 sons that are both starting their first teaching jobs. They are 22 and 24.
As Deb said, I have also bargained with God and prayer saying, "Please just let me see my kids get through college, then please just let me see them find love, and please just let me see them find jobs." I keep revising my prayers too! I want to be here for a long time yet. I'd like to see grandchildren some day (down the road!)
I am so glad that Phil is back to work and enjoying time with the kids.
I find it so energizing to hear about other's victories over this obstacle.
Be well.
God's blessings to you,
Jackie
-
- September 4, 2011 at 11:52 pm
Thanks Jerry, I was told the same thing. I always wondered was my lesion so big (6.75 mm) because it was cancerous or was it cancerous because it was so big? I guess it's one of those questions like which came first the chicken or the egg???
The world may never know. I hope you are enjoying your Labor Day weekend!!
-
- August 30, 2011 at 4:14 am
Hi Jeannine,
My name is Jackie. I have been a registered member of this site for quite a while, but I'm pretty sure I've never posted.
As you already know, you are not alone in this journey. I was diagnosed in 7/08 with anal mucosal melanoma, stage IIIb. I thought I had a hemorrhoid. I had an APR (abdominal-peritoneal resection), with colostomy, total hyster, and lymph node dissection, with one positive node. I did have a year of interferon. I am happy to report that I have celebrated 3 years since my diagnosis. I feel wonderful.
I would like to offer you hope and encouragement. It is so hard when you're first diagnosed. It felt like it was all a dream. I hope that you have wonderful friends and family to surround and support you.
You will find good information here and people that can truly relate to your circumstance. Please feel free to ask me any questions about my journey
Blessings to you,
Jackie
-
- September 30, 2011 at 9:16 pm
Hi,
Have the tumor sample DNA sequenced ( to determine type of mutation) – Boris Bastian used to do them when he was at UCSF. Get a second opinion of current and clinical trial treatment options.
I like Keith Flaherty MGH
I also like Anna Pavlick – NYUCC
Keep going
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- September 30, 2011 at 9:16 pm
Hi,
Have the tumor sample DNA sequenced ( to determine type of mutation) – Boris Bastian used to do them when he was at UCSF. Get a second opinion of current and clinical trial treatment options.
I like Keith Flaherty MGH
I also like Anna Pavlick – NYUCC
Keep going
-
- February 22, 2012 at 5:02 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
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- February 25, 2012 at 7:33 pm
Vikas,
I would suggest that you open a new BB post (topic) for your entry. Some people use the viewing order of the base original post and others use the order of the last post. Under the base post order your post are listed under Jean9's as of 8/21/2011.
Don't know if you have read my profile, please do so. I was mis-diaagnosed by local doctor for 3 1/2 years then slow rolled by a local surgeon for another 7 months. i had one tumor in the anus and three tumors just outside of the anal opening. One pathology report stated that that the tumor was mucousal melanoma. It was decided that a local excision was possible versus having to have a complete colostomy. It is haard to tell whhih is the best thing to have done. I have a close friend that had the complete colostomy done and after a couple of years has had spread and continued operations and treatments.
i would most likely be dead if it were not for the great response and treatment action from the University of Virginia (UVA) Oncology team of Dr Slingluff (surgeon) and Dr G. Weiss (head of the Medcal Oncology dept). Initial diagnosis was May 2006, reached stage IV in Feb 2007. Local Onc told me that i would most likely be dead within 6 months. of Feb. Upon the stage IV diagnosis I immediately went into IL-2 treatment at UVA with Dr G. Weiss (Who has been working with IL-2 since the early 1980's) One needs to have an experienced IL-2 team. (IL-2 is still the most successful broad based melanoma treatment.) This was successsful for 20 months and then the Tumor growth went wild again.
During this time my research had found one aarticle published by one Oncologist about one patient in one peer rrviewed publication that showed a good success with a treatment for mucousal melanoma with the C-kit oncoprotein over exprssion and also containing a c-kit DNA mutation in the tumor. I also talked with Dr. Wen Jen Hwu at MD Anderson (MDA) in Texas, who was also working with the c-kit tumors. The UVA Oncologists consulted with Dr Hwu and then decided that even though they had never tried the Gleevec (Glevic) for mucousal c-kit melanoma, that it appeared to be the most favorablea route to try. I have been essentially stable for 5 years now on this treatment (Not FDA approved for melanoma) The Gleevec has been approved for three other types of cancer which also may contain c-kit mutations.
I have also learned that Vanderbilt-Ingram Cancer Center (http://www.vicc.org/news/category/melanoma) is also doing much work on Mucosal Melanoma.
-
- February 25, 2012 at 7:33 pm
Vikas,
I would suggest that you open a new BB post (topic) for your entry. Some people use the viewing order of the base original post and others use the order of the last post. Under the base post order your post are listed under Jean9's as of 8/21/2011.
Don't know if you have read my profile, please do so. I was mis-diaagnosed by local doctor for 3 1/2 years then slow rolled by a local surgeon for another 7 months. i had one tumor in the anus and three tumors just outside of the anal opening. One pathology report stated that that the tumor was mucousal melanoma. It was decided that a local excision was possible versus having to have a complete colostomy. It is haard to tell whhih is the best thing to have done. I have a close friend that had the complete colostomy done and after a couple of years has had spread and continued operations and treatments.
i would most likely be dead if it were not for the great response and treatment action from the University of Virginia (UVA) Oncology team of Dr Slingluff (surgeon) and Dr G. Weiss (head of the Medcal Oncology dept). Initial diagnosis was May 2006, reached stage IV in Feb 2007. Local Onc told me that i would most likely be dead within 6 months. of Feb. Upon the stage IV diagnosis I immediately went into IL-2 treatment at UVA with Dr G. Weiss (Who has been working with IL-2 since the early 1980's) One needs to have an experienced IL-2 team. (IL-2 is still the most successful broad based melanoma treatment.) This was successsful for 20 months and then the Tumor growth went wild again.
During this time my research had found one aarticle published by one Oncologist about one patient in one peer rrviewed publication that showed a good success with a treatment for mucousal melanoma with the C-kit oncoprotein over exprssion and also containing a c-kit DNA mutation in the tumor. I also talked with Dr. Wen Jen Hwu at MD Anderson (MDA) in Texas, who was also working with the c-kit tumors. The UVA Oncologists consulted with Dr Hwu and then decided that even though they had never tried the Gleevec (Glevic) for mucousal c-kit melanoma, that it appeared to be the most favorablea route to try. I have been essentially stable for 5 years now on this treatment (Not FDA approved for melanoma) The Gleevec has been approved for three other types of cancer which also may contain c-kit mutations.
I have also learned that Vanderbilt-Ingram Cancer Center (http://www.vicc.org/news/category/melanoma) is also doing much work on Mucosal Melanoma.
-
- February 25, 2012 at 7:33 pm
Vikas,
I would suggest that you open a new BB post (topic) for your entry. Some people use the viewing order of the base original post and others use the order of the last post. Under the base post order your post are listed under Jean9's as of 8/21/2011.
Don't know if you have read my profile, please do so. I was mis-diaagnosed by local doctor for 3 1/2 years then slow rolled by a local surgeon for another 7 months. i had one tumor in the anus and three tumors just outside of the anal opening. One pathology report stated that that the tumor was mucousal melanoma. It was decided that a local excision was possible versus having to have a complete colostomy. It is haard to tell whhih is the best thing to have done. I have a close friend that had the complete colostomy done and after a couple of years has had spread and continued operations and treatments.
i would most likely be dead if it were not for the great response and treatment action from the University of Virginia (UVA) Oncology team of Dr Slingluff (surgeon) and Dr G. Weiss (head of the Medcal Oncology dept). Initial diagnosis was May 2006, reached stage IV in Feb 2007. Local Onc told me that i would most likely be dead within 6 months. of Feb. Upon the stage IV diagnosis I immediately went into IL-2 treatment at UVA with Dr G. Weiss (Who has been working with IL-2 since the early 1980's) One needs to have an experienced IL-2 team. (IL-2 is still the most successful broad based melanoma treatment.) This was successsful for 20 months and then the Tumor growth went wild again.
During this time my research had found one aarticle published by one Oncologist about one patient in one peer rrviewed publication that showed a good success with a treatment for mucousal melanoma with the C-kit oncoprotein over exprssion and also containing a c-kit DNA mutation in the tumor. I also talked with Dr. Wen Jen Hwu at MD Anderson (MDA) in Texas, who was also working with the c-kit tumors. The UVA Oncologists consulted with Dr Hwu and then decided that even though they had never tried the Gleevec (Glevic) for mucousal c-kit melanoma, that it appeared to be the most favorablea route to try. I have been essentially stable for 5 years now on this treatment (Not FDA approved for melanoma) The Gleevec has been approved for three other types of cancer which also may contain c-kit mutations.
I have also learned that Vanderbilt-Ingram Cancer Center (http://www.vicc.org/news/category/melanoma) is also doing much work on Mucosal Melanoma.
-
- February 25, 2012 at 8:04 pm
Vikas,
I would suggest that you open a new BB post (topic) for your entry. Some people use the viewing order of the base original post and others use the order of the last post. Under the base post order your post are listed under Jean9's as of 8/21/2011. We don't separate posts by the type of melanoma, but list all posts (by either the date of original posting or by the date of replies.
Don't know if you have read my profile, please do so. I was mis-diagnosed by local doctor for 3 1/2 years then slow rolled by a local surgeon for another 7 months. i had one tumor in the anus and three tumors just outside of the anal opening. One pathology report stated that that the tumor was mucosal melanoma. It was decided that a local excision was possible versus having to have a complete colostomy. It is hard to tell which is the best thing to have done. I have a close friend that had the complete colostomy done and after a couple of years has had spread and continued operations and treatments.
i would most likely be dead if it were not for the great response and treatment action from the University of Virginia (UVA) Oncology team of Dr Slingluff (surgeon) and Dr G. Weiss (head of the Medical Oncology dept). Initial diagnosis was May 2006, reached stage IV in Feb 2007. Local Onc told me that i would most likely be dead within 6 months. of Feb. Upon the stage IV diagnosis I immediately went into IL-2 treatment at UVA with Dr G. Weiss (Who has been working with IL-2 since the early 1980's) One needs to have an experienced IL-2 team. (IL-2 is still the most successful broad based melanoma treatment.) This was successful for 20 months and then the Tumor growth went wild again.
During this time my research had found one article published by one Oncologist about one patient in one peer reviewed publication that showed a good success with a treatment for mucosal melanoma with the C-kit oncoprotein over expression and also containing a c-kit DNA mutation in the tumor. I also talked with Dr. Wen Jen Hwu at MD Anderson (MDA) in Texas, who was also working with the c-kit tumors. The UVA Oncologists consulted with Dr Hwu and then decided that even though they had never tried the Gleevec (Glevic) for mucosal c-kit melanoma, that it appeared to be the most favorable route to try. I have been essentially stable for 5 years now on this treatment (Not FDA approved for melanoma) The Gleevec has been approved for three other types of cancer which also may contain c-kit mutations.
I have also learned that Vanderbilt-Ingram Cancer Center (http://www.vicc.org/news/category/melanoma) is also doing much work on Mucosal Melanoma.
-
- February 25, 2012 at 8:04 pm
Vikas,
I would suggest that you open a new BB post (topic) for your entry. Some people use the viewing order of the base original post and others use the order of the last post. Under the base post order your post are listed under Jean9's as of 8/21/2011. We don't separate posts by the type of melanoma, but list all posts (by either the date of original posting or by the date of replies.
Don't know if you have read my profile, please do so. I was mis-diagnosed by local doctor for 3 1/2 years then slow rolled by a local surgeon for another 7 months. i had one tumor in the anus and three tumors just outside of the anal opening. One pathology report stated that that the tumor was mucosal melanoma. It was decided that a local excision was possible versus having to have a complete colostomy. It is hard to tell which is the best thing to have done. I have a close friend that had the complete colostomy done and after a couple of years has had spread and continued operations and treatments.
i would most likely be dead if it were not for the great response and treatment action from the University of Virginia (UVA) Oncology team of Dr Slingluff (surgeon) and Dr G. Weiss (head of the Medical Oncology dept). Initial diagnosis was May 2006, reached stage IV in Feb 2007. Local Onc told me that i would most likely be dead within 6 months. of Feb. Upon the stage IV diagnosis I immediately went into IL-2 treatment at UVA with Dr G. Weiss (Who has been working with IL-2 since the early 1980's) One needs to have an experienced IL-2 team. (IL-2 is still the most successful broad based melanoma treatment.) This was successful for 20 months and then the Tumor growth went wild again.
During this time my research had found one article published by one Oncologist about one patient in one peer reviewed publication that showed a good success with a treatment for mucosal melanoma with the C-kit oncoprotein over expression and also containing a c-kit DNA mutation in the tumor. I also talked with Dr. Wen Jen Hwu at MD Anderson (MDA) in Texas, who was also working with the c-kit tumors. The UVA Oncologists consulted with Dr Hwu and then decided that even though they had never tried the Gleevec (Glevic) for mucosal c-kit melanoma, that it appeared to be the most favorable route to try. I have been essentially stable for 5 years now on this treatment (Not FDA approved for melanoma) The Gleevec has been approved for three other types of cancer which also may contain c-kit mutations.
I have also learned that Vanderbilt-Ingram Cancer Center (http://www.vicc.org/news/category/melanoma) is also doing much work on Mucosal Melanoma.
-
- February 25, 2012 at 8:04 pm
Vikas,
I would suggest that you open a new BB post (topic) for your entry. Some people use the viewing order of the base original post and others use the order of the last post. Under the base post order your post are listed under Jean9's as of 8/21/2011. We don't separate posts by the type of melanoma, but list all posts (by either the date of original posting or by the date of replies.
Don't know if you have read my profile, please do so. I was mis-diagnosed by local doctor for 3 1/2 years then slow rolled by a local surgeon for another 7 months. i had one tumor in the anus and three tumors just outside of the anal opening. One pathology report stated that that the tumor was mucosal melanoma. It was decided that a local excision was possible versus having to have a complete colostomy. It is hard to tell which is the best thing to have done. I have a close friend that had the complete colostomy done and after a couple of years has had spread and continued operations and treatments.
i would most likely be dead if it were not for the great response and treatment action from the University of Virginia (UVA) Oncology team of Dr Slingluff (surgeon) and Dr G. Weiss (head of the Medical Oncology dept). Initial diagnosis was May 2006, reached stage IV in Feb 2007. Local Onc told me that i would most likely be dead within 6 months. of Feb. Upon the stage IV diagnosis I immediately went into IL-2 treatment at UVA with Dr G. Weiss (Who has been working with IL-2 since the early 1980's) One needs to have an experienced IL-2 team. (IL-2 is still the most successful broad based melanoma treatment.) This was successful for 20 months and then the Tumor growth went wild again.
During this time my research had found one article published by one Oncologist about one patient in one peer reviewed publication that showed a good success with a treatment for mucosal melanoma with the C-kit oncoprotein over expression and also containing a c-kit DNA mutation in the tumor. I also talked with Dr. Wen Jen Hwu at MD Anderson (MDA) in Texas, who was also working with the c-kit tumors. The UVA Oncologists consulted with Dr Hwu and then decided that even though they had never tried the Gleevec (Glevic) for mucosal c-kit melanoma, that it appeared to be the most favorable route to try. I have been essentially stable for 5 years now on this treatment (Not FDA approved for melanoma) The Gleevec has been approved for three other types of cancer which also may contain c-kit mutations.
I have also learned that Vanderbilt-Ingram Cancer Center (http://www.vicc.org/news/category/melanoma) is also doing much work on Mucosal Melanoma.
-
- February 22, 2012 at 5:02 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:02 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:03 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:03 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:03 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:04 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:04 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 22, 2012 at 5:04 am
Hi All,
This is the first time i am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery. As per PET this is not spread and limited to anus opening. I am confused and very much disatrubed with this
Could anybody suggest the best treatment anywhere in the world
Thanks with Regards,
Vikas
-
- February 24, 2012 at 4:58 am
Hello Vikas,
I am so sorry that your Father has been diagnosed with Anal Melanoma. I have found the Doctors at Dana Farber in Bobston MA to be wonderful and they were able to correctly diagnose my situation.http://www.dana-farber.org/ What I have learned over the last year is that everyone is different. The size and shape of your father's lesion would also be an important factor in his treatment. I know of several people who have also gone to MD Anderson in Texas. http://www.mdanderson.org/locations/index.html I wish you the very best of luck. There are many people within the MRF site that have experience with other treatment and hospitals that I'm sure would share their story. My treatment has been only surgery. When they find a lump or a bump they cut it out. I had some bumps on my scalp removed this week and will have another lesion removed from my anal area on Monday. It is all expected to be fine and the surgeries are just a precaution.
I wish you and your father the best of luck. I will add him to my prayer list.
Sincerely,
Jeannine
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- February 24, 2012 at 7:53 am
Hi Jeannine,
Thank you very much for guidance and support to me.
i Have gone through all the articles and helped me to understand the seriouness of the deasese.
As i am from India and currently undergoing treatment on Ruby Clinic pune, doctor suggested me to go for Colostomy surgery. Need to check with the doctor for other alternative treatments.
Thanks
Vikas
-
- February 24, 2012 at 7:53 am
Hi Jeannine,
Thank you very much for guidance and support to me.
i Have gone through all the articles and helped me to understand the seriouness of the deasese.
As i am from India and currently undergoing treatment on Ruby Clinic pune, doctor suggested me to go for Colostomy surgery. Need to check with the doctor for other alternative treatments.
Thanks
Vikas
-
- February 24, 2012 at 7:53 am
Hi Jeannine,
Thank you very much for guidance and support to me.
i Have gone through all the articles and helped me to understand the seriouness of the deasese.
As i am from India and currently undergoing treatment on Ruby Clinic pune, doctor suggested me to go for Colostomy surgery. Need to check with the doctor for other alternative treatments.
Thanks
Vikas
-
- February 25, 2012 at 12:22 am
Hi Vikas,
So sorry that your father is battling this illness. Bless you for seeking the best care for him. This is a rare cancer which is treated differently from individual to individual and hospital to hospital. I know of a few of us and no two have received the same treatment plan.
As Jeannine mentioned, Dana Farber and MD Anderson are renowned facilities. I have had my surgeries and treatments at University of Pittsburgh Medical Center. It would be good for your father to be cared for by someone that has dealt with mucosal melanoma in the past.
I was diagnosed in July, 08 as stage 3B. I had the abdominal/peritoneal resection with a colostomy, a lymph node dissection with 1 positive node and a year of interferon. This summer will mark 4 years since my diagnosis.
I will gladly answer any further questions that you may have. I am 50. How old is your dad?
Saying prayers for healing for your dad.
Be well,
Jackie
-
- February 25, 2012 at 12:22 am
Hi Vikas,
So sorry that your father is battling this illness. Bless you for seeking the best care for him. This is a rare cancer which is treated differently from individual to individual and hospital to hospital. I know of a few of us and no two have received the same treatment plan.
As Jeannine mentioned, Dana Farber and MD Anderson are renowned facilities. I have had my surgeries and treatments at University of Pittsburgh Medical Center. It would be good for your father to be cared for by someone that has dealt with mucosal melanoma in the past.
I was diagnosed in July, 08 as stage 3B. I had the abdominal/peritoneal resection with a colostomy, a lymph node dissection with 1 positive node and a year of interferon. This summer will mark 4 years since my diagnosis.
I will gladly answer any further questions that you may have. I am 50. How old is your dad?
Saying prayers for healing for your dad.
Be well,
Jackie
-
- February 25, 2012 at 12:22 am
Hi Vikas,
So sorry that your father is battling this illness. Bless you for seeking the best care for him. This is a rare cancer which is treated differently from individual to individual and hospital to hospital. I know of a few of us and no two have received the same treatment plan.
As Jeannine mentioned, Dana Farber and MD Anderson are renowned facilities. I have had my surgeries and treatments at University of Pittsburgh Medical Center. It would be good for your father to be cared for by someone that has dealt with mucosal melanoma in the past.
I was diagnosed in July, 08 as stage 3B. I had the abdominal/peritoneal resection with a colostomy, a lymph node dissection with 1 positive node and a year of interferon. This summer will mark 4 years since my diagnosis.
I will gladly answer any further questions that you may have. I am 50. How old is your dad?
Saying prayers for healing for your dad.
Be well,
Jackie
-
- February 24, 2012 at 4:58 am
Hello Vikas,
I am so sorry that your Father has been diagnosed with Anal Melanoma. I have found the Doctors at Dana Farber in Bobston MA to be wonderful and they were able to correctly diagnose my situation.http://www.dana-farber.org/ What I have learned over the last year is that everyone is different. The size and shape of your father's lesion would also be an important factor in his treatment. I know of several people who have also gone to MD Anderson in Texas. http://www.mdanderson.org/locations/index.html I wish you the very best of luck. There are many people within the MRF site that have experience with other treatment and hospitals that I'm sure would share their story. My treatment has been only surgery. When they find a lump or a bump they cut it out. I had some bumps on my scalp removed this week and will have another lesion removed from my anal area on Monday. It is all expected to be fine and the surgeries are just a precaution.
I wish you and your father the best of luck. I will add him to my prayer list.
Sincerely,
Jeannine
-
- February 24, 2012 at 4:58 am
Hello Vikas,
I am so sorry that your Father has been diagnosed with Anal Melanoma. I have found the Doctors at Dana Farber in Bobston MA to be wonderful and they were able to correctly diagnose my situation.http://www.dana-farber.org/ What I have learned over the last year is that everyone is different. The size and shape of your father's lesion would also be an important factor in his treatment. I know of several people who have also gone to MD Anderson in Texas. http://www.mdanderson.org/locations/index.html I wish you the very best of luck. There are many people within the MRF site that have experience with other treatment and hospitals that I'm sure would share their story. My treatment has been only surgery. When they find a lump or a bump they cut it out. I had some bumps on my scalp removed this week and will have another lesion removed from my anal area on Monday. It is all expected to be fine and the surgeries are just a precaution.
I wish you and your father the best of luck. I will add him to my prayer list.
Sincerely,
Jeannine
-
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