Is an Oncologist specializing in Melanoma absolutely necessary?!?!

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4/9/2013 7:52pm
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My husband is stage 4 metastic melanoma and we have not seen a melanoma specialist.  His oncologist is GREAT and we have alot of confidence in him.  But....now I am wondering if we should be seeing an oncologist that specializes only in melanomas.  From what I have read his treatment is standard protocol  - he is BRAF negative so Yervoy was his drug of choice.  Are we wrong not to go to an oncologist specializing in melanomas?!?!?

Absolutely see a melanoma specialist. My wife has is  now stage four and has been in the care of a melanoma specialist at the U of M since her first tumor was removed. In January my wife preceded to take Yervoy treatment after having IL2 at the U of M last August,  She decided to take yervoy in our hospital her in NC with the approval of our U of M oncologist. We met with our local general oncologist who was going to do Yervoy under the direction of our oncologist at the U of M.  Two weeks after the first treatment on February my wife started having diarrhea she suffered for four weeks until we found out he had not contacted the U of M and was acting on his own, They had started using Yervoy at this hospital last August and did not know what to do when it went wrong. My wife suffered until I got in Contact with the U of M and it was almost to late to stop the damage. She only recovered after a dose of Remicade. She is still trying to come off high doses of Prednisone. This never would have happened if we had done treatment at the U of M with and experience Melanoma Oncologist. I can also tell you the local general oncologist tried to get my wife to take interferon treatment even know the U of M oncologist said it was less than 10% effective at that time and is now believed to not be effective at all. See report on Melanoma International site.

See an experienced Melanoma specialist General oncologist are not experienced in Melanoma. 

 

Hope  this  helps!

Daniel

Trust in God - Live one day at a time

We also LOVE our local general oncologist. He is a smart, kind, and caring man with a great way about him. He has also been with us since the beginning of our melanoma journey, over three years ago! However, we also know how tricky melanoma can be, how much medications and treatment are changing, and that doctors who deal with all the cancers, can't possibly stay up on the evolving world of melanoma care. Our local doctor encouraged us to go to MDAnderson last year, and has no problem with my husband's scans being at Dana Farber, and having our melanoma specialist there. Our local doctor also told us flat out, if Phil needs Yervoy down the road, he should get it from a melanoma specialist, who completely understands and can quickly treat the side effects. We appreciate his honesty, and truly feel fortunate we have such a good team of doctors. So, get to a melanoma specialist, who knows the drugs, the clinical trials, and who only deals with your husband's cancer. We still keep our local oncologist for monthly checks including blood work, and we send him every scan for review too. Best of luck in your fight, Valerie (Phil's wife)

I lost one of my very good friends today to Mel. He refused to switch to a Mel specialist. He suffered and never recovered after severe colitis and other complications from Yervoy administered by a general oncologist at a hospital that had never used it. It made him ineligible for any trials or other treatments. Yervoy can act in the body for a long time - they dont know how long, good and bad - so much still to learn about it.

I've had it myself with some immune complications and I pray it goes easily for your husband but please go somewhere very experienced with Yervoy.

I have to agree with the others...a melanoma specialist is essential...perhaps in concert with your regular oncologost...but still. Check my blog post for my reasons..."Got melanoma? Get a melanoma specialist!" chaoticallypreciselifeloveandmelanoma
Best, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

where do i find your blog?

never mind....found it....thanks

Early on in my diagnosis things were quite different than they are now. The field of melanoma treatments is rapidly changing and evolving. It really is imperative to see one who specializes in melanoma and in regards to the ipilimumab treatment... it is definitely beneficial to have a Dr who has had the most experience with it possible. The more people they have had on it and the more years of experinece, the more likely they will be able to keep on top of the side effects that may show up. We also love my medical oncologist, but we make a 3  1/2 hr drive to see a speicalist for the ipi treatment and follow up. Hard to stress it enough... it really makes a huge difference to see a mel specialist.

Tina

 

I share the previous comments about getting to see a melanoma specialist.  I can share one personal bit of information.

When my PCP first saw the images in my lung I was referred to a local oncologist, a very well respected and highly recommended individual.  He was the one responsible for the original melanoma diagnosis after ordering a lung needle biopsy and PET/CT scan.  At the meeting where he told me of the results, I wanted to talk about treatment options.  He gave me some comfort about options but then strongly suggested that I see an oncologist who specializes in melanoma.  Advice I took, and am forever grateful for.

Dick