› Forums › Mucosal Melanoma Community › Mucosal melanoma treatment advice
- This topic has 28 replies, 6 voices, and was last updated 13 years, 6 months ago by
Teodora.
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- May 25, 2011 at 1:51 am
Hello everyone,
I am new to this forum where no one wants to be, but we all found oureselves on .I hope to find some advice and support troughout what seems to be a very lonely journey due to the rarity of this desease.
Here is a brief history of it:
Hello everyone,
I am new to this forum where no one wants to be, but we all found oureselves on .I hope to find some advice and support troughout what seems to be a very lonely journey due to the rarity of this desease.
Here is a brief history of it:
In June during a family trip/me and my husband/ to my native country of Bulgaria I suddenly started bleeding:the bleeding was spontaneous and intense with no previous pain or any other symptoms .On the second day they rushed me into the ER where where they immediately performed emergency procedure to clean me up.The doctor said I seem to have a cyst on my uterus that could be giving me problems further down the line and he suggested hysterectomy at some point as a precaution measure.We barely made it back home to the US, when the next month I had another massive bleedig:a life saving hysterectomy was performed to removed my uterus with what showed via ultra sound to be a fibroid attached to my utterus and cervix.
I merely made it because my haemoglobin levels hit the critical 6 number where I needed blood transfusion.One week after the surgery,still weak and exausted they called us in and gave us the devastating news: the tumour was malignant melanoma, which I never heard of/on the uterus/.They doc didn't sound very hopeful, he said is a very rare and aggressive kind of cancer and he gave me no more than few months to live.No need to say we were shocked and devastated and tottaly blown away;I was preparing to go quetly.
Amazingly, the subsequent CAT scan didn't show anything.At this point I was referred to an ovarian cancer oncologist at the Maine Medical Center in Portland, Maine.The PET scan they did in August 2010 came back clean. Everybody was totally puzzled.I had a second surgery with my doctor to remove tissue and lymph nodes-the biopsy came back negative for cancer.My second PET scan 6 weeks ago came back clean too.Anyway the pap smear my doctor made on the same day we were discussing the pet results showed up some suspicious cells.I've had a biopsy 20 days ago and the result came back positive for melanoma again.Luckily it was a very, very tiny spot on the top of my vagina near the surgery that was just taking a root, around 1 mm big.The oncologyst said she we were lucky to find it at all.They presume this were few cells from the original tumour that started growing there .They didn't see anything else,she said my vagina looked pink and clear except for that little spot with a ring of inflammation around it.I am about to start 5 weeks of radiation to secure the area from any residual melanoma cells, also I have been referred to an oncologist to discuss possible further treatment.I did a lots of research on the Internet and I am dreading they will offer me Interferon/ or wait and watch/: I have a history of major depression on and off and I have asthma/breathing problems, sometimes experiencing panic attacks, controlled by Xanax.I've heard this treatment is definately No No for people with history of psychiatric problems.Also I have almost zero tolerance to med's side effects with even simple over the counter meds making me sick with vomitting and nausea, like drammamine, allegra,doxycicline .Interferon sounds like a very toxic treatment with minimum effectiveness so I already pretty much made my mind p that I am going to opt out of it.Also I read radiation is not very effective on melanoma as they say melanoma is often deemed radio resistant.
I contacted Dana Faber Center in Boston and required expert consultation on possible treatment options:they haven't come back to me yet.
Any advices/recommendations?I know it varies individually from person to person and that is my main worry.Ho do we know what will work best for us and what course of action to take?
Thanks to everyone that will come back to me with any advice,
God Bless,
Teodora
- Replies
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- May 25, 2011 at 3:45 am
Teodora. My husband was diagnosed with mucosal melanoma in January 2010 and recently completed one year of interferon. He has his scans at Dana Farber and has remained stable since his initial surgery, next scans in July. As you know, mucosal melanoma is rare and often times aggressive, although there isn’t enough mucosal cases studied to identify what makes effective treatment. Rather than focus on all the negatives associated with this diagnosis, my husband and I decided to get to a melanoma center and try to come up with Plan A,B, and C to attack this cancer. As you know, from reading this board, melanoma can come back anytime (or not) and we wanted to be in the loop of knowing about clinical trials,etc, if Phil’s cancer did reoccur.
You know your body and mind best, so it sounds like interferon would be difficult for you. However, my main suggestion is that you get your records to either Dana Farber or Mass General (I see you are from Maine) ASAP. They share clinical trials and both have some good melanoma doctors. Even if you don’t qualify for any current trials, you need to broaden your exposure to melanoma doctors and information related to your case and your cancer. My husband has a local doctor who monitored his interferon and is wonderful, but we feel Our Boston Team is our safety net if we need them. So don’t panic, don’t believe all the doom and gloom from some doctors and on the Internet regarding melanoma, view yourself as an individual who can fight this disease, and get to a melanoma center! God Bless, Valerie (Phil’s wife)-
- May 25, 2011 at 4:17 am
Dear Val,
Thank you for your prompt reply.I followed my gut instincts to immediately contact the nearest melanoma cancer institute which would be Dana Farber Harvard Institute in Boston.They e-mailed me that their new parient coordinator Robert Kelsey will get in contact with me for an appointment ,but so fat they haven't contacted me.I suspect they accept patients that fall into certain category and I was wondering if I I qualify to be accepted as an patient by them or for any eventual clinical trials.Boston is only one hour away flight from Presque isle in Nortern Maine where we live, and I definately want a consultation with them and a second opinion ASAP.
I nearly died one year ago so I am not scared anymore to go ahead with at least try to still be around for some more time.
My best wishes to Fill , I hope you are successful with his treatments and good luck,
Teodora
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- May 25, 2011 at 4:17 am
Dear Val,
Thank you for your prompt reply.I followed my gut instincts to immediately contact the nearest melanoma cancer institute which would be Dana Farber Harvard Institute in Boston.They e-mailed me that their new parient coordinator Robert Kelsey will get in contact with me for an appointment ,but so fat they haven't contacted me.I suspect they accept patients that fall into certain category and I was wondering if I I qualify to be accepted as an patient by them or for any eventual clinical trials.Boston is only one hour away flight from Presque isle in Nortern Maine where we live, and I definately want a consultation with them and a second opinion ASAP.
I nearly died one year ago so I am not scared anymore to go ahead with at least try to still be around for some more time.
My best wishes to Fill , I hope you are successful with his treatments and good luck,
Teodora
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- May 25, 2011 at 12:26 pm
Teodora. I am so surprised that Dana Farber hasn’t called you back, we have had a very good experience with them, but I know others that have had difficulty of late. They recently moved building and one of their melanoma doctors left, so it sounds like that are having trouble in this transition. Mass General is another option, and it sounds like they would get you in quick. I did forget to mention that they will want to test your mucosal tumor for C-kit mutation, usually they send slides of tumor to Oregon for that test, so takes at least a few weeks. If it tests positive for c-kit than they would usually offer gleevec for treatment. My husband tested negative for c-kit, so like I said in other posts, always have a plan B and C. Please keep us posted on your progress. Valerie -
- May 25, 2011 at 12:26 pm
Teodora. I am so surprised that Dana Farber hasn’t called you back, we have had a very good experience with them, but I know others that have had difficulty of late. They recently moved building and one of their melanoma doctors left, so it sounds like that are having trouble in this transition. Mass General is another option, and it sounds like they would get you in quick. I did forget to mention that they will want to test your mucosal tumor for C-kit mutation, usually they send slides of tumor to Oregon for that test, so takes at least a few weeks. If it tests positive for c-kit than they would usually offer gleevec for treatment. My husband tested negative for c-kit, so like I said in other posts, always have a plan B and C. Please keep us posted on your progress. Valerie -
- May 27, 2011 at 3:28 pm
Dear Valerie,
Finally Patient Coordinator Robert Kelsey from Dana Farber came back to me;I have a consultation appointment with them scheduled for July 20th in Boston , one week after I complete my 5 weeks radiation staring next Monday;I feel relieved that they finaly are taking me on.
Robert Kelsey said they have seen quite few cases with mucosal melanoma;he requested my medical records to be faxed to him from Maine Medical Center.
Also my radiologist seem to think /just like me intuitively/ that Interferon on the top of being very toxic, it is a standard treatment prescribed usualy for high risk cutaneous melanoma patient stages 2b and 3.However he said my melanoma is mucosal therefore different type and probably Interferon would do little if anything at all for it.He said nowdays the top melanoma cancer centers have newer treatments, clinical trials and experimental vaccines and depending on my individual case they can assign me a proper treatment that would be hopefully much more effective with significanly less toxic side effects.
Anyway I hope that Phil is doing ok, take care and Thank you once again for your concern and good thought,
God Bless,
Teodora
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- May 27, 2011 at 3:28 pm
Dear Valerie,
Finally Patient Coordinator Robert Kelsey from Dana Farber came back to me;I have a consultation appointment with them scheduled for July 20th in Boston , one week after I complete my 5 weeks radiation staring next Monday;I feel relieved that they finaly are taking me on.
Robert Kelsey said they have seen quite few cases with mucosal melanoma;he requested my medical records to be faxed to him from Maine Medical Center.
Also my radiologist seem to think /just like me intuitively/ that Interferon on the top of being very toxic, it is a standard treatment prescribed usualy for high risk cutaneous melanoma patient stages 2b and 3.However he said my melanoma is mucosal therefore different type and probably Interferon would do little if anything at all for it.He said nowdays the top melanoma cancer centers have newer treatments, clinical trials and experimental vaccines and depending on my individual case they can assign me a proper treatment that would be hopefully much more effective with significanly less toxic side effects.
Anyway I hope that Phil is doing ok, take care and Thank you once again for your concern and good thought,
God Bless,
Teodora
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- May 31, 2011 at 11:04 pm
Dear Valerie,
How are you and Phil doing?I hope all is Ok with you both.
I just had a look at Dana-Farbers current clinical trials:
http://www.dana-farber.org/Research/Clinical-Trials/Clinical-Trials-by-Diagnosis.aspx?did=16
and I thought I could possibly qualify for numbers 1 and 11/post-surgical/ and they could possibly offer to sign me on.
As you mentioned I am currently looking into plans B and C just in case I am C-kit negative therefore not eligible for C-kit inhibitors.
Did Phil qualify for clinical trial at Dana and how did you decide on whether to enter it and if it would be working/benefical for him?
Any advice would be highly appreciated.
Best regards,
Teodora
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- May 31, 2011 at 11:04 pm
Dear Valerie,
How are you and Phil doing?I hope all is Ok with you both.
I just had a look at Dana-Farbers current clinical trials:
http://www.dana-farber.org/Research/Clinical-Trials/Clinical-Trials-by-Diagnosis.aspx?did=16
and I thought I could possibly qualify for numbers 1 and 11/post-surgical/ and they could possibly offer to sign me on.
As you mentioned I am currently looking into plans B and C just in case I am C-kit negative therefore not eligible for C-kit inhibitors.
Did Phil qualify for clinical trial at Dana and how did you decide on whether to enter it and if it would be working/benefical for him?
Any advice would be highly appreciated.
Best regards,
Teodora
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- May 25, 2011 at 3:45 am
Teodora. My husband was diagnosed with mucosal melanoma in January 2010 and recently completed one year of interferon. He has his scans at Dana Farber and has remained stable since his initial surgery, next scans in July. As you know, mucosal melanoma is rare and often times aggressive, although there isn’t enough mucosal cases studied to identify what makes effective treatment. Rather than focus on all the negatives associated with this diagnosis, my husband and I decided to get to a melanoma center and try to come up with Plan A,B, and C to attack this cancer. As you know, from reading this board, melanoma can come back anytime (or not) and we wanted to be in the loop of knowing about clinical trials,etc, if Phil’s cancer did reoccur.
You know your body and mind best, so it sounds like interferon would be difficult for you. However, my main suggestion is that you get your records to either Dana Farber or Mass General (I see you are from Maine) ASAP. They share clinical trials and both have some good melanoma doctors. Even if you don’t qualify for any current trials, you need to broaden your exposure to melanoma doctors and information related to your case and your cancer. My husband has a local doctor who monitored his interferon and is wonderful, but we feel Our Boston Team is our safety net if we need them. So don’t panic, don’t believe all the doom and gloom from some doctors and on the Internet regarding melanoma, view yourself as an individual who can fight this disease, and get to a melanoma center! God Bless, Valerie (Phil’s wife) -
- May 25, 2011 at 4:07 am
Teordora,
I'm sorry you've had to join us but we will try to guide you and definitely give you hope!
You will most likely not be offered interfuron. That's rarely offered to stage IV patients in the US. If your tumor was mucosol they might offer you Gleevec. Jerry from Fauq has been on it for a few years and it has kept him stable. I think they'll have to do a bit more testing on your tumor to make sure that it has the right mutations.
You said you were referred to Dana Farber but have not heard back. There are other hospitals in that area that have some fantastic melanoma Doctors! Do a search on this board about Dana Farber. There was a post recently from some people that were not happy with response time. In the past people have raved about the hospital but it sounds like they are short staffed at the moment.
We have had a few women who have had melanoma to the uterus. Sharon comes to mind. She does not post very much anymore but hopefully she will see your post. My mel was in the bladder and other places. That's also rare but I'm doing well almost 5 years out from a stage IV diagnosis.
You were introduced into the world of melanoma with a rude bang. Sounds like you were then sent to Doctors that had specialties in different areas. Hopefully you will get to a hospital that understands this disease and can guide you down a treatable path.
If you do not have measurable disease then most likely you will be offered watch and wait. It takes a bit to get used to but the drugs are caustic and they only keep you on them if it's working. If they have nothing to watch then they don't know. As far as radiation I think it depends on the area that they radiate. It seems to work on the brain and they've been able to slow down lymph node progression and sometimes slow bone progression. They have discussed it with me just in the last few days if they can't remove my latest tumor because of the placement near a nerve.
I'll e-mail Jerry and Sharon and hopefully they will be able to give you some advice.
Linda
Stage IV since 06
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- May 25, 2011 at 12:32 pm
Thank you ,Linda.
I felt so lost into all this and I feel I have come to the right place.Sigh of relief!
Your honesty, compassion and advice is deeply appreciated , guys.I hope we well keep giving each other support, strenght and courage to face the enormous challenges this unpredictable disease poses;I hope that there are people out there who keep working and making progress to find a cure/ways to control and manage melanoma so all people which lives has been affected by it can lead somewhat normal lives again.
My doctor who is Director of the Oncology Division in Maine is very sharp and proactive and I have to give her a huge credit for trying to be few steps ahead in this head game;however she is no melanoma specialist, so I am trying to get consultations with melanoma specialists in Boston area;still haven't heard anything from Dana Farber but I will try Mass General too.Thank you once again for your thoughtfulness and good advice.
I nearly didn't make it twice so I am somewhat still amazed to be still here ;life has funny ways ,doesn't it?I suppose keep fighting is the only option.
God Bless you,
Teodora
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- May 25, 2011 at 12:32 pm
Thank you ,Linda.
I felt so lost into all this and I feel I have come to the right place.Sigh of relief!
Your honesty, compassion and advice is deeply appreciated , guys.I hope we well keep giving each other support, strenght and courage to face the enormous challenges this unpredictable disease poses;I hope that there are people out there who keep working and making progress to find a cure/ways to control and manage melanoma so all people which lives has been affected by it can lead somewhat normal lives again.
My doctor who is Director of the Oncology Division in Maine is very sharp and proactive and I have to give her a huge credit for trying to be few steps ahead in this head game;however she is no melanoma specialist, so I am trying to get consultations with melanoma specialists in Boston area;still haven't heard anything from Dana Farber but I will try Mass General too.Thank you once again for your thoughtfulness and good advice.
I nearly didn't make it twice so I am somewhat still amazed to be still here ;life has funny ways ,doesn't it?I suppose keep fighting is the only option.
God Bless you,
Teodora
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- May 25, 2011 at 4:07 am
Teordora,
I'm sorry you've had to join us but we will try to guide you and definitely give you hope!
You will most likely not be offered interfuron. That's rarely offered to stage IV patients in the US. If your tumor was mucosol they might offer you Gleevec. Jerry from Fauq has been on it for a few years and it has kept him stable. I think they'll have to do a bit more testing on your tumor to make sure that it has the right mutations.
You said you were referred to Dana Farber but have not heard back. There are other hospitals in that area that have some fantastic melanoma Doctors! Do a search on this board about Dana Farber. There was a post recently from some people that were not happy with response time. In the past people have raved about the hospital but it sounds like they are short staffed at the moment.
We have had a few women who have had melanoma to the uterus. Sharon comes to mind. She does not post very much anymore but hopefully she will see your post. My mel was in the bladder and other places. That's also rare but I'm doing well almost 5 years out from a stage IV diagnosis.
You were introduced into the world of melanoma with a rude bang. Sounds like you were then sent to Doctors that had specialties in different areas. Hopefully you will get to a hospital that understands this disease and can guide you down a treatable path.
If you do not have measurable disease then most likely you will be offered watch and wait. It takes a bit to get used to but the drugs are caustic and they only keep you on them if it's working. If they have nothing to watch then they don't know. As far as radiation I think it depends on the area that they radiate. It seems to work on the brain and they've been able to slow down lymph node progression and sometimes slow bone progression. They have discussed it with me just in the last few days if they can't remove my latest tumor because of the placement near a nerve.
I'll e-mail Jerry and Sharon and hopefully they will be able to give you some advice.
Linda
Stage IV since 06
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- May 25, 2011 at 4:08 am
Teodora,
A few quick thoughts for you….
A second opinion in Boston is a good idea but Dana Farber is going through some changes right now… Mass General will be able to get you in and offer you expert advise. Drs Flaherly or Lawrence. Call tomorrow 🙂
You don't need to worry about Interferon. It is only offered for late stage 2 and stage 3 melanoma. There should be a clinical trial for you. Look on clinicaltrials.gov. MGH will be able to help you with the next step.
Peace to you. Kelly
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- May 25, 2011 at 4:08 am
Teodora,
A few quick thoughts for you….
A second opinion in Boston is a good idea but Dana Farber is going through some changes right now… Mass General will be able to get you in and offer you expert advise. Drs Flaherly or Lawrence. Call tomorrow 🙂
You don't need to worry about Interferon. It is only offered for late stage 2 and stage 3 melanoma. There should be a clinical trial for you. Look on clinicaltrials.gov. MGH will be able to help you with the next step.
Peace to you. Kelly
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- May 25, 2011 at 2:45 pm
Hi Theodoa,
What a harrowing story! you are lucky to have lived through all of this, and that tells me you have a real chance to beat it.
I have no experience with mucosal melanoma beyond knowing folks here who have dealt with it,. I see they are already coming through for you. I agree you should ask for C Kit testing and look into Gleevac, which has worked great for some mucosal melanoma patients.
I just wanted to tell you welcome to the board, and good luck!
Dian in spokane
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- May 25, 2011 at 3:09 pm
Hi Dian,
Thank you for you good words.
I know that I am pretty lucky to be still alive;it was a miracle that I somehow ,don't know how , pulled it trough what was supposed to kill me for sure.I Thank God every day for keeping me alive.
I have an appointment to see oncologist on June 7th to discuss possible treatments and I will ask to be C-kit tested;what I read here is that very few people have been found to be C-kit gene positive therefore eligible for Gleevek, but we can only hope so much.
The support and encouragement on this site was has been tremendous;and I received some very useful information from Valerie, Kelly,Linda, Thank you all.
We have a saying in my home country in Bulgaria"It is written", that means we can not escape our own destiny.We have to be brave enough to face our own battles I suppose, that is all.
Good Luck to you too,
Teodora
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- May 25, 2011 at 3:09 pm
Hi Dian,
Thank you for you good words.
I know that I am pretty lucky to be still alive;it was a miracle that I somehow ,don't know how , pulled it trough what was supposed to kill me for sure.I Thank God every day for keeping me alive.
I have an appointment to see oncologist on June 7th to discuss possible treatments and I will ask to be C-kit tested;what I read here is that very few people have been found to be C-kit gene positive therefore eligible for Gleevek, but we can only hope so much.
The support and encouragement on this site was has been tremendous;and I received some very useful information from Valerie, Kelly,Linda, Thank you all.
We have a saying in my home country in Bulgaria"It is written", that means we can not escape our own destiny.We have to be brave enough to face our own battles I suppose, that is all.
Good Luck to you too,
Teodora
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- May 25, 2011 at 2:45 pm
Hi Theodoa,
What a harrowing story! you are lucky to have lived through all of this, and that tells me you have a real chance to beat it.
I have no experience with mucosal melanoma beyond knowing folks here who have dealt with it,. I see they are already coming through for you. I agree you should ask for C Kit testing and look into Gleevac, which has worked great for some mucosal melanoma patients.
I just wanted to tell you welcome to the board, and good luck!
Dian in spokane
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- May 26, 2011 at 2:47 pm
The chances that yur tumors may be C-kit positive are in the 20% range given the prmary location. Do searchs on this board and on the archived board (http://www.melanoma.org/community/archived-mrf-bulletin-board) for "JerryfromFauq" and "c-kit" and "mucousal".
I have written many posts. While the statistical percentages on anything to do wth Melanoma are not great, It's worked for me. I've had too many reasons to be dead over the years according to statistics. I aint't a statistic, yet! I'm a me!
My Oncologist went along with my research, wishes and tested and started me on Imatinib (Gleevec) before formal clinical trials were even conducted on it for melanoma. I taink him very much for listening and steppiing outside his normal "comfort zone" to look at a new therapy I wanted. What can I say? The odds on me even having melanoma were extremely small. The odds on it being mucosal melanoma were even smaller, the odds on having a C-kit oncoprotein over expression were small and then the odds on haviing one of the DNA mutations that responds to Gleevec treatments put me so far down the list that I shouldn't still be here. Maybe as my wiffe says, I'm just too stubborn! One never kn ows just what will work on who, (yet). They are getting closer!
My email address is [email protected] If you like we can make contact and speak telephonically.
I also am on a list with other mucosal melanoma patients maintaiined by [email protected]. Most of the people there are not c-kit positive. I'm sure she will be glade to put in our mail group.
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- May 31, 2011 at 5:44 am
Couple of sites to look at, they discuss percentages and relationship of responses to different mutations.
Trails and treatments:
http://mmdm.cancercommons.org/smw/index.php/Subtype_2.1http://therapy.collabrx.com/melanoma/display?results_C-KIT_and_others=Subtype_2.1,C-KIT
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- May 31, 2011 at 5:44 am
Couple of sites to look at, they discuss percentages and relationship of responses to different mutations.
Trails and treatments:
http://mmdm.cancercommons.org/smw/index.php/Subtype_2.1http://therapy.collabrx.com/melanoma/display?results_C-KIT_and_others=Subtype_2.1,C-KIT
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- May 26, 2011 at 2:47 pm
The chances that yur tumors may be C-kit positive are in the 20% range given the prmary location. Do searchs on this board and on the archived board (http://www.melanoma.org/community/archived-mrf-bulletin-board) for "JerryfromFauq" and "c-kit" and "mucousal".
I have written many posts. While the statistical percentages on anything to do wth Melanoma are not great, It's worked for me. I've had too many reasons to be dead over the years according to statistics. I aint't a statistic, yet! I'm a me!
My Oncologist went along with my research, wishes and tested and started me on Imatinib (Gleevec) before formal clinical trials were even conducted on it for melanoma. I taink him very much for listening and steppiing outside his normal "comfort zone" to look at a new therapy I wanted. What can I say? The odds on me even having melanoma were extremely small. The odds on it being mucosal melanoma were even smaller, the odds on having a C-kit oncoprotein over expression were small and then the odds on haviing one of the DNA mutations that responds to Gleevec treatments put me so far down the list that I shouldn't still be here. Maybe as my wiffe says, I'm just too stubborn! One never kn ows just what will work on who, (yet). They are getting closer!
My email address is [email protected] If you like we can make contact and speak telephonically.
I also am on a list with other mucosal melanoma patients maintaiined by [email protected]. Most of the people there are not c-kit positive. I'm sure she will be glade to put in our mail group.
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Tagged: mucosal melanoma
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