Huggy here. I am 57 and within two months of retirement. Fell into this website today so this is all very new. It is scary to see how widespread this horrible thing is.
Three years ago I had a malignant melanoma (rated 1.5 out of 5) removed from my wrist. I had 6 monthly check ups however missed the last one due to a fishing trip (real bright I know).
The next thing I know I felt a lump under my armpit and immediately had a needle biopsy which came back as third stage melanoma. I have since had CT and Pet scans and Ultrasounds and blood tests.
Surgery to remove the melanoma ( which was a combined mass of melanomic nodes) and all glands in that area took place nearly three ago.
It is soon to be decision time. More pathology reports will give me an idea as to which course of treatment to follow.
If the pathology report indicates there are aggressive mutants then he has suggested I may want to join a clinical trial. I'm ok with this providing it doesn't delay any other choices of treatment.
He downplayed the choice of having radiotherapy as there is no proof that this 100% works.
The drug interferon was discussed and this sounds like an option
Looking at this website there are a whole lot of people worst off than me and I feel humble in being able to share my story.
This sounds very similar to my story, only I had a gap of 13 years after the melanoma on my knee, to last month,when I found a groin lump. I had it removed two weeks ago. The oncologist told me this week that there was only melanoma in the lump, but is checking braf to see if I have the mutant type and depending will suggest two clinical trials next week. I'm unsure of what I should do. I understand the importance of trials, but it's all so unknown, side effects, etc and don't want to place more strain on my husband in travel as we live in the country.
Yes it's not that straight forward making such an important decision. I am making my decision tomorrow after seeing the oncologist. If I have the mutant type I figure I have three major choices.
Radiotherapy ( the oncologist indicated there was no medical or scientific evidence to say that this will work...this surprised me).
Interferon. Self injecting over a twelve month period
Clinical trials. He was a big advocate for this. Like you I am scared of getting the placebo and being put well behind the eightball whereas I could have been more proactive by taking one of the other choices. Have I lost valuable time by heading down this path.
When you read the side effects of a clinical trial ( nausea, vomiting, diarrhoea etc) so I'm thinking I'm going to know pretty soon if I'm not on the real thing.
Are you looking at the same scenario Sue.
Would love to keep in touch re your progress and to perhaps compare notes
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