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Metastatic Melanoma, need advice!

maxcash
Posts: 1
Joined: Sep 2007

32 years of age. When I was 18 I had a malignant melanoma mole removed from my neck. Everything else was cleared and I did follow ups for about 4-5 yrs with no recurrence.

This year, back in March I noticed shortness of breath and went in for a check up. Dr. ordered chest x-ray which showed numerous lung nodules. Then he ordered ct's of my chest, stomach, and pelvic area. The results were not good. Tumor on my liver and over 20 in my lungs. Referred me to an oncologist and we decided on IL-2.

During the IL-2 treatments the tumors actually grew and I had no benefit from this horrible treatment. We then started on 2 forms of chemo, Taxol and Carboplatnum, they are working so far. Every 3 weeks i get a dose and every 6 weeks we do scans. I've had 7 doses and each scan showed some shrinkage in some and stablization in the others, no growth. I also had the gamma knife done on a little spot in my brain which seemed to work really well also. I complained about back pain, so he ordered mri of spine. It turns out that I have the disease back there too so we do radiation for a week and now my back feels better a month later.

So, treatments are working and I feel great. But what I don't get is why is it impossible or pretty close to, that I won't keep getting better? Or that when the Chemo Plateus, another treatment can't work just as well? My Dr. said that he gives me a 50/50 chance at 1 yr survival and 70/30 for 2 yr. What the hell? I'm only 32 yrs old and healthy. Isn't there an chance that I can keep this in remission for 5-10 yrs, maybe not complete remission but at least stun the growth?? Isn't it possible that within that time, they might come out with a better form of treatment that might work on someone my age and extend life even longer???

The Dr. said that eventually I will need someone to take care of me like my parents who I live with now because of this and that I shouldn't make any long term plans. I just don't get it. It's hard to believe that this could happen to me. He even mentioned hospice care might happen eventually. All of this while things are improving is what gets me.

Anyone have some advice or anything to add to this nightmare? Anybody else in similar circumstance?

Thanks for the help!

CharlieB's picture
CharlieB
Posts: 9
Joined: Sep 2004

It seems odd that there should be a connection between a successfully treated melanoma on your neck from 14 years ago and your current diagnosis. In 85% of the cases where melanoma does return (metastasize), it does so within two years. Of course, with each succeeding year the chance of recurrence continues to decrease.
I can tell you that I know from experience as a survivor of melanoma how you are feeling. I will also tell you that I am convinced that my faith, prayer and hope is what made the difference and got me through the last 3 years. I am praying for you. Charlie

jimob
Posts: 2
Joined: Sep 2007

I was diagnosed with melanoma in 5/03 stage 4 I had two neck disections with positive nodes removed on both surgeries, I then had radiation for two months to my neck, then I had Interferon treatments daily for 6 months, fortunately myine didn't spread to any other parts to my body to date, I see my dermatologist and ongologist twice a year and CT scans. I was 49 when diagnosed and my dermadologist told me last year that he was impressed and happy that I was still making appoints to see him. Initially I don't think any of the doctors thought I would be here today but my entire medical staff always kept thier heads up. My brother died at 39 of melanoma he was diagnose to late and didn't want any trails to be done on him. Good luck with your future, keep positive, and keep researching , find trials out there to see if there is anything for you.

thindmon
Posts: 2
Joined: Oct 2008

Hi,

If you are not happy with how your Dr. is dealing with this, then change Doctors. I was diagnosed Stage 4 in 2002 and told many of the same things you are being told. I am still here and my scans in Aug showed no disease. You have to stay positve and aggressive at the same time. Good luck to you and stay strong.

Tom

Zod66's picture
Zod66
Posts: 28
Joined: May 2008

to me what your being treated for and how you were diagnosed this second time. You've apparently had no biopsies done which from my experience is the one test that defines what type of cancer you have. Your X-ray's and CT scans are picking up nodules and tumors but they do not tell the doctor what type of cancer it is. So, from the information you've given I question why they jumped to the IL-2 treatments; which is used on Melanoma.

Your second treatments are a mixed message. Taxol is used for Melanoma as well but Carboplatin is typically not; commonly used for Lung, Head & neck, Leukemias, Testis, and some female only cancers. So, do you have Lung cancer or metastatic Melanoma? The Gamma knife makes sense for the brain tumors. You went on to say you had an MRI of your back done and mentioned you have "the disease" there too; what disease? You say your getting scans every 6 weeks; what kind of scans? See what you can do about getting a PET scan if you've not already had one. PET scans are the one scan that will pick up Melanoma.

If I were you I would write down some question for my Oncologist, like exactly what types of cancer do I have and where. And what types of cancer are you treating me for and have him explain how he came to the conclusion that you have whatever type(s) of cancer he thinks you have.

Once you feel you've got all the information you can get from your current doctor consider seeing another one, giving them as little information as possible, then compare the approach & prognosis.

And I'm not keen on Dr.'s giving odds or percentages but if it is in their opinion "terminal" then I can see it being prudent to give you a time frame for life expectancy so you can take care of things.

The best to you and your family

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