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March 1, 2013 at 9:24 pm #21070leejanet4550Participant
My wonderful husband, Don, was diagnosed just 2 months ago with Stage IV Metastatic Melanoma. We thought he had a bad disk (back pain). No history of melanoma (couple of basal cell spots removed in earlier years). We were just getting ready to retire and spend a winter in Florida. Never found primary.
He had one asymptomatic lesion in his left frontal lobe; Cyberknife performed 2/8/13. Two pelvic masses and another lesion at the base of his spine, received 12 radiation treatments in attempt to alleviate pain (helped a little). Other tumors in muscle along his spine, at base of neck, adrenal gland, small nodules in lungs, and recently discovered one or two in stomach/esophogus.
His disease is pretty widespread. He’s being treated at Dana Farber, who wanted him on Zelboraf. Insurance company denied it because he is BRAF V600R, not V600E. It is now in third appeal in Washington (he has a BC/BS Federal Plan). I AM LOOKING FOR ANY RESEARCH/SUCCESSFUL EXPERIENCE/KNOWLEDGE OF ZELBORAF’S EFFECTIVENESS ON V600R MUTATION THAT MIGHT HELP IN THIS APPEAL!
On 2/15/13, Don was given his first infusion of Yervoy. A few days later, it seems all hell broke lose. His right leg became almost paralyzed, his right arm extremely weak, and he was overcome by extreme exhaustion. He spent a week in Brigham & Women’s Hospital. They felt he had tapered too quickly off the steroids, so they gave him high dose injections and he’s now on 16mg a day. His red blood count was so low, they gave him two units of blood. This is when we found out that he has mets in his stomach/esophogus which are “seeping” blood. The brain met is now larger than it was a month ago and there is inflammation around it, so they are now suggesting surgery to remove the brain tumor.
I have so many questions. This is all so fast! Brain surgery is scheduled for Tuesday, March 5. Don is an otherwise healthy, robust man; 6-foot 1-inch, 200 pounds. I have to lift his right leg for him to get into/out of the car, up the stairs, etc. He can barely sign his name with his weakened right hand.
I need to help save this man’s life, as he is MY life. I’m so confused about the treatments and the clinical trials. Some say no brain mets, others say brain mets allowed. What meds and trials should I be asking his melanoma oncologist about? I believe she knows what she’s doing, but I know I have to be our own advocate!
Thanks for helping! I’m so scared.
JanetMarch 1, 2013 at 9:56 pm #59408krissy424Participant
I feel your pain Janet. You have come to the right place for help.
I can understand why you feel overwhelmed.
Trust that it’s never hopeless. I’m sire Catherine will
Post to you by tonight with suggestions. Hold on!
Never ever give up!March 1, 2013 at 10:03 pm #59409AnonymousGuest
Janet, I am so sorry you guys have to deal with this horrible disease and a horrible insurance company 😡
And what the insurance company is saying is BULL!
Here you go and don’t take anymore crap off of them:
The data they present suggests the V600R mutation, though rare, may have a higher response rate (5 out of 6 in this paper) than the V600E!
Good luck and God Bless you both!
JeffMarch 1, 2013 at 10:18 pm #59410leejanet4550Participant
Thanks, Jeff. The link you sent is to an abstract that I copied and sent along with my appeal! How much clearer can it be stated that the clinical community has shown and expects v600r to respond to Zelboraf as does the v600e. What allows insurance companies to wear blinders and quote from papers written 18 months ago to deny a person his chance at life?March 1, 2013 at 10:45 pm #59411AnonymousGuest Janet:
Don may be one of those people who needs a quick response to allow time for the IPI to do its work. So, you may want to consider paying for the first month or so yourself. It’s expensive but you may be able to get it prescribed “off-label”. Working with Dana Farber
you might even be able to negotiate with the drug company to get the same discounted rate they allow the insurance companies or get a “compassionate use” determination.
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