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February 21, 2013 at 7:33 pm #21040marlee425Participant
Again . . . stressing retesting for BRAF mutation. Don was first tested in March 2012; recently retested at UPMC . . . positive. Opens more options. Appointment on Tuesday at UPMC for next step(s).
MarleeFebruary 21, 2013 at 9:06 pm #59300Catherine PooleKeymaster
Yes, it is important and the Cobas Test seems to be the most sensitive.February 21, 2013 at 9:19 pm #59301NYKarenParticipant Marlee,
Hurray for both of you. I don’t come here often enough, but it seems I do at good times. First to read Missue’s post about retesting and now yours about Don. I hope he has great results–so far Zel has been nothing short of a miracle for me.
KarenFebruary 22, 2013 at 1:24 pm #59302marlee425Participant
Wonderful news! We are definitely hoping and praying for a miracle! What side effects didi you experience with Zel? Don has brain mets, along with hot spots on left and right axilla plus abdomen . . Liver and lungs are still clear. We are hoping the new options with being BRAF positive will help to control what’s happening from the neck down and will then slow down what’s happening in the brain. He has tolerated SRS, WBR, and two Gamma Knife procedures. I’m lucky he’s a fighter.
MarleeFebruary 22, 2013 at 2:53 pm #59303msue5Participant
I was the one who was retested and was neg 1/12 yrs ago. Recently became stage 4 with thoracic nodes. For some reason my Onc had the metastatic nodes tested and was found pos. I posted today that I had to stop due to multiple squamous cell cancers. I also didn’t have a large tumor load so I have been taken off the Z for now. My side effects were mostly skin related. I have about 5 different skin rashes going on at once. I also experienced fatigue. Every week there were a couple of times when I had to sleep most of the day. I’m fortunately am retired and could do this. I help take care of my grandson who lives with us but he is 11 and pretty self sufficient. Joint pain in different joints every 3 days before it would move to another joint. Currently rt thumb and wrist pain is pretty bad. Dry mouth, dry eyes and itching from all the rashes. In spite of this I felt I was tolerating it well. The joint pain is really bad and I don’t know if that would have gotten worse or better. My last dose was Wed eve but Dr said it won’t clear completely for a week or 2. Good luck and keep us posted.
Mary SueFebruary 22, 2013 at 3:15 pm #59304lunchladyParticipant
My husband’s previous oncologist (mel specialist) tested once for BRAF and he was negative. In the almost 3 years since diagnosis, he never mentioned retesting. He now has a new oncologist who says he will retest for BRAF with each recurrence. I am so grateful for the information I have gleemed from this forum. Otherwise I would not have known it was important to retest (among other things). Thank you all for the education that only one who experiences melanoma can give.
Lola (Yes, Lola Lunch Lady)February 22, 2013 at 9:17 pm #59305msue5Participant
I was originally neg 2 yrs ago. When retested I was pos. I felt like I had won the lottery. Just had to go off(read my earlier post) but I won’t hesitate to use it again when needed. Pretty ironic that drug for skin cancer causes more skin cancer. The literature that came with Zelboraf also points out that new melanomas are also a risk. But I think they would be caught early. So spread the word about being retested if your testing was more than a year old.
Mary SueFebruary 22, 2013 at 9:49 pm #59306rochelleParticipant
Just want to weigh in on Braf testing…when I was tested 3 years ago my results came back (twice) inconclusive..equipment issues. Should I need it, we (my oncology team) will try again. Seems there are many of us who have had difficulties getting a firm result. I also think it’s interesting lesions should be tested after every recurrence…good to know..thanks Lunch Lady!
MarthaFebruary 24, 2013 at 2:20 am #59307NYKarenParticipant
Side effects for me were severe joint pain, many skin-tags (no big deal) and mysterious leg-pain that nothing helped. Aleve or Celebrex PLUS 5mg prednisone took care if joint pain but NSAIDs are contra-indicated for me. So after a 2-week zel vacation, my onc lowered my dose to 3/3.
Still the leg-pain persisted, so onc sent me to main-management doc. She put me on Neurontin. I’m up to 200 mg 3/x day. Has helped tremendously with leg & joint pain. She said the pred caused weakness in already compromised leg pain so I’m supposed to go for PT.
I’m also looking for an accupuncturist near my office.
ALSO,(gee didn’t know there was so much to say) we are trying 4 weeks on, 2 weeks off with Zel. There have been some indications that this type of scheduling can delay/prevent resistance to Zel. The thinking is if I develop resistance, by that time MEC/BRAF combo will be FDA approved. One can only hope.
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