Any metastatic melanoma survivors?

Hello, I am a thirty year surivor of melanoma cancer to my right leg calf and right hip . I had chemo and radation which I suffer from the damages from them but I am alive.Keep your chin up and smile.E=mail me back and I live in Flordia too.Carolyn

APatient said:

First I d like to ask a question. Why is it
I cannot post a messg on my own here? I see
no where on this board for me to start a new
topic? Why? Can you help?
Next......I had a rare melanoma removed from
my scalp this past Aug. I now have in 2003
a mass inside and on the outside of my spleen
don't know how long its been sitting there.
It was found by accident on a M R I of
abdomen. The melanoma in scalp was a
cellur blue nevus . Anybody have melanoma
show up in there spleen and what could
be done about it. Im being told that
the whole spleen will have to come out.
please respond anybody..............
thanks

Hi, I'm 33 and I just had whipple surgery to remove a mass in my bile duct. It ended up being melanoma and it has spread beyond the margin. I'm waiting to get my PeT scan and go from there. I'm desperately searching for anyone out there who has had this and has any advice for me especially concerning treatment. I'm so scared, and I have a 4 year old son...I want to fight this but the drs don't offer much hope. thanks, my email address is jpniles@mhtc.net. penny

My good friend was just diagnosed with metastatic melanoma in his left frontal lobe. He had a mole removed 2 years ago from his back and the margins were clear and they thought they got it all. It was 7x5x6 when they removed it. He also has metastases to his lymph nodes and bone. He is married with 2 young boys. Do you know where the best place to go is? Who is leading the way in the area? My prayers are with you and your family.

peterdaly said:

I would recommend you look into the clinical trials at the NIH/NCI in Bethesda Maryland. In my mind Steven Rosenburg, MD is THE GUY! You have to jump through some hoops to get into the trials but it is well worth it. I (
stage III, 1 1/2 years from diagnosis) went to their vaccine trial and a good friend of mine (Stage IV) has been in 3 of their trials now with great results. It means traveling (covered by NIH) but it's worth it to work with the world's experts.

Peter . . . I am very interested in specifically what were the three kinds of trials that your Stage Iv friend underwent in Bethesda, with Dr. Rosenberg. And could you be more specific on what "doing fine" entails. Thanks NLHTJC

my dad was recently diagnosed with metastatic milignant melanoma he had a tumor removed from his lower back but recently found out there are leasions in his brain,and the melanoma spread to his lympnotic system .he is very dizzy,and in pain.if there are any positive and encouraging words from any survivors of this kind please let me know.I am praying everyday ...i am so scared, these are stories you here about and now im living it.

Jdecelis said:

I was first diagnosed with melanoma 4 1/2 years ago and 1 and 1/2 years ago it became metastatic with multiple tumors on and around my right breast. The original site was on my right side.

I visited a Dr. Morton in Santa Monica, California who injected the tumors with BCG, a tuberculousis vaccine to stimulate the immune response. The tumors began to puss out within weeks and were surgically removed with a mastectomy. A few months later more appeared above the original breast area and again injections into the tumors with BCG. They pussed out and some tumors disappeared and what was removed was necrotic (dead).

Occassional tumors appear on the skin in the same general area and have been removed.

Tried Lukine and Interfuron therapies but became resistant to the first and had lowered white cell counts with the second. Taking nothing now but will cat-scan/contrast or Pet scan in another month.

Most of my doctor friends thought I had 6 months but 18 months later still going strong.

John

John,

I am very interested in your story. Could you please tell me more about the vaccine you received in Santa Monica. What hospital did you go to?
Thank you and take care,
Ninja

Dear Dawn, I hope you are well. Please advise as to your current treatment. Have you heard of BRAF? Also, are you getting radiation. I am in Buffalo, NY and my father has metastatic melanoma to the lungs. Please write. Take Care.

Here's one
I have been battling for almost 5 yrs now. I had 5 tumors in my brain, 7 in my lungs and about a dozen others... Down to about half a dozen. The good news is it sounds like yours is a slow moving Melanoma but still the odds arent good. Mine is a very fast moving (uber aggresive) Melanoma.... but I'm uber stubborn and as of late have a chemo that seems to be helping. Keep up the good fight.

ihatemelanoma1 said:

hey yalleh!
Hi Yalleh! Right now my nana is fighting melanoma that has spread to her brain. no other evidence of metastatic disease...just poof! to her brain. she is 72 has 2 tumors in her brain and has been treated with interfuron when she was cancer free,brain surgery to remove what they could of the tumor, had SRS on what was left over...which grew, and even after that a second appeared. She's undergoing 14 fractions of whole brain radiation given at a 2.5gy dose. I was wondering what your course of treatment has been? I'm really interested in your story!


Feel free to email me. I would like to chat with someone who has been through this and beat it...I can tell my Nana your inspirational story.

Anyone else who has dealt with Metastatic Melanoma to the brain or who's loved one has dealt with it, feel free to email me as well. Her prognosis is poor and we could use any and all inspiration.

Thank you!!

Kristen
kristensloan@ymail.com

Heloo ihatemelanoma
My course of treatment is the entire gamet and all the tricks in the book known to Oncologists. I started off with an 8 inch skin removal on my back as wells as all the lymph nodes in my arm pit (from stage 2 to 3). I did 1 month of high dose Interferon followed by 12 months of the inject yourself every second day (this was Stage 3 Melanoma). The tests came back clear with no Melanoma for almost a year after Interferon. It was then found that I had progressed to stage 4, so I become a lab rat for a new trial chemotherapy. After 3 months it showed no progress so I did biochemotherapy along with 3 other known Melanoma chemotherapies (IL-2 + abraxane, decarpozine and one other ). The tumors showed no more progression but it also had not gone away. SO I stayed on Abraxane and decarpazine in the hopes that we could contain the tumors in my hilar lymph node and my upper right lung. We would then remove the lung and lymph node. The tumors did not stay contained, they were now spread all over the lungs and throughout the body (but not the brain). I then went on another trial (which by the way is the one that is working but was not approved by the FDA because it has not shown high enough success). After three months it had further progressed and was now in the brain. I was taken off the trail so that I could get stereotactic raditation in the brain. I had to wait a month (off of treatment) before I could get the radiation on three tumors. So I did the radiation (at which time I now had 5 tumors in the brain but they could only work on three of them). I was then was tested again a month later. This time it showed that the tumors operated on were stable and the other two had gone away. I was then rushed back on the trial that looked like it worked and now here I am.

I'm sorry to say that I cant say I have beat it, I still have tumors in my lungs, brain and throughout the body, but I can say I'm in a much better position than I was almost a year ago.

I can tell you that what helped my wife more than anything is to focus her energy on something positive. She did a walk to raise money for melanoma (the website is AIM for Melanoma). I would also suggest (coming from the side of the person with cancer) that you live in the moment, spend as much positive time with your Nana as possible and if you can only spend a little time with her make sure it is good time for both of you. I know I had to shoulder the burden of many family members and its not fun or easy to do. I know I really appreciated a smiling face and a good joke (even if the joke was at my expense.. not sure if your Nana wants you to make fun or tease her).

Hopefully this helps and good luck for you and your loved ones