On 2/25/2008
clover77 wrote:
My husband and I were married in June 2007 and he was diagnosed with melanoma only a few months later in September. He had a mole on the back of his neck that I had been bugging him about getting checked out and like a lot of men he had the attitude that it is just a mole and put off going to a doctor. I made an appointment for him and convinced him to go. That doctor sent him to a surgeon to have the mole removed, it came back as Melanoma. We were then sent to the University of Penn for a wide excission and sentinal node biopsy. I think we both thaught "ok, so we go get this done and no big deal". Well one of the lymph nodes came back with a little bit of melanoma in it. He was scheduled for another surgery to remove more lymph nodes from that area. They removed 50 lymph nodes and thank God they all came back with no signs of Melanoma. So, then I think we both thaught "whew, that is great, now we can go back to normal life, just get checked out every now and then, no big deal". Then the oncologist wants to see us in her office outside of the normal setting within the pigmented leasion group at U Penn. She is now is giving us three options.
1) Only strict observation. See her every 3 months, the pigmented leasion group every 6 months and a regular dermatologist every 6 months. Have regular PET scens, etc.... - She is not really recomending this because he is so young and is otherwise very healthy and should respond well to any other therapies.
2) Interferon - 1 month of high dose through the vain and 11 months give shots himself under the skin.
3) Participate in one of a number of clinical trials and if we chose this rout we would need to have a blood test completed to determine his tishoe type.
What we decided at the visit was that we would go ahead and have the bloodwork done to determine if #3 is even an option. However, after more thought, neither one of us really like the idea of him being a lab rat. I understand that clinical trials could be great and they have to have some basis and sound testing to even get to the point of a clinical trial, but still don't like that idea of him being part of a test. I want something that I know has been proven to do something. I have done some reading on interferon and have seen good and bad things on it. But it seems to be something that at least has some evidence to say that it gives a better chance than doing nothing. It is really hard to accept the fact that he may be sick for a year because of this though. Even through this surgeries, he has been fairly healthy and able to be up and doing things. He may need more time off of work, which he does not have (he has already been having to take time off without pay and his current job is not at all supportive). The hospital bills are pooring in becuase he has really high co-pays. I am working two jobs just to make ends meet and it is going to be hard for me to be able to be home while he is going through the treatment. I guess I just want to know from people who have been through this whether it seems really worth it. If it is giving him a better chance at being around longer, than I want to do it no matter how hard it is. Sorry this was so long.
Hello,
My husband had a similar situation 3 years ago. He had a mole removed from his shoulder and was determined as Melanoma (stage 4 according to the size). He had all surgeries and lymph node checks and all was clear. We thought great, no problem. His Oncologist did suggested he do the Interferon and he did. His side effects were not to bad but he was a big guy (6'1" - 250 pounds) to begin with and therefore the weight loss and fatigue did not look as bad on him. He started in May and was able to coach High School football by the fall. And he worked the whole time.
He is still with us today but not in as god of shape. The Melanoma came back a year later with one tumor in his lung. We had that surgically removed and he was clear for another year until multiple tumors came in his lung. He them tried Temodar. It shrunk some tumors but others continued to grow. He then tried Temodar (Chemo Pill) and Tomotherapy together and it did a remarkable job. (Tomotherapy is a special type of radiation therapy). All this going on and he still continued to work and coach football. At this point he has been slowed do to an infection in his lung (pneumonia) and a heart attack all due to the treatments. He has dropped to 190 pounds but is getting a little stronger every day. He has a few tumors on his skin which will probably be treated with radiation and after that he will be trying some other form of Chemo.
I guess I am telling you this because we checked into MD Anderson and The Cancer Treatment Centers of America (he doctors at UW Wisconsin) and they all recommended the Temodar because it really is the only treatment for Melanoma. Otherwise the only choice is which hospitals are conducting what trials and which one fits you the best.
I pray every day that he makes it past the 5 year mark which the stats say is only 10% of cases. We have a 5 year old daughter which we waited a long time for (12 years) and I am hoping GOD will not take him away before she has a chance to grow up.
You can send all your records to MD Anderson without actually going there and they will review your case and let you know what they think. This is what we did. We live in Illinois and it made more sense than spending money on trips all over the US to hear the same thing.
God Bless and I hope all works out for you.
Kim in Illinois