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March 30, 2013 at 11:16 pm #21149
Good evening everyone. I was just wondering if any one has any suggestions on what helps with the joint pain while on Zelboraf. Any suggestions would be of much help. Thanks NancyMarch 31, 2013 at 1:31 am #59869NYKarenParticipant Hi Nancy,
Celebrex 200 mg 2x/day and dosage reduction to 3/3. Also oxycodone 10 mg. 2-3x/day as needed. Anytime I try going back up to 4/4, the pain is unbearable.
Had 3-month PET scan yesterday–seeing onc this coming Thursday. We know scalp and ear tumors have resolved, leaving behind pigment to remember them by and that mets on my face do still contain some Mel. Dr. Wolchok believes in alternate dosing ( 3 weeks on, 3 weeks off as a relief for the joint pain and to hopefully increase efficacy but I was too freaked out by finding out Mel was still on face so went back on full-time. In thurs, I might reconsider.
Nancy, what have you tried so far? Any dose reduction? There was also a vitamin b1 called benfotiamine that some people swear by, but it didn’t help me.
KarenMarch 31, 2013 at 11:01 am #59870
My stepfather has been in Z for about 3 in a half weeks. He was dx. about 4 months ago with it he was having severe thigh pain and the doctors kept telling him it was arthritis. They finally did a sonogram which showed a mass in the thigh. Biopsy was done and we were told it was Mel and it had the braf mutation. The mass was inoperable because it is warped around his femoral artery. Cat scan showed no other tumors just many lymph nodes enlarged and a few spots on the brain. He goes back in 4 week for is follow up pet scan. They have not reduced his does yet. He is currently going to the VA and I am not really happy with them. Long story but I think this site will be very helpful. When he fist stared he was put on morphine which was horrible for him. He could not function taking that. I know he is on neuron tin but it does not seem to be working. I really appreciate your response I am going to need all the knowledge I can get. The va are not very knowledgeable with Mel and it seems that I am going to be doing a lot of work. He has to go there for now because he does not have insurance. But I was told that I can asked to be referred out does anyone know how the VA (veterans) works. Once again thanks Karen and I am really glad to see the Z is starting to work you. I hope all is well and you are totally clear by your next scanMarch 31, 2013 at 12:11 pm #59871Catherine PooleKeymaster Nancy,
I would definitely call your doctor and ask about the best meds for joint pain. I’ve heard from our scientific folks that advil and tylenol can be very helpful. Be careful with the oxycodone type drugs as they cause nausea, disorientation, sleepiness and constipation. Tramadol is another prescription drug that is very effective but doesn’t have the side effects of the narcotic type meds. It is important to get on top of the pain too. Hope the Zelboraf works well for your father. There may be other drugs being approved soon, the GSK BRAF should be out in the next few months. let us know how things are going.March 31, 2013 at 3:24 pm #59872NYKarenParticipant
Nancy, Catherine is correct of course, I would only add that some docs swear by Aleve and some say that Celebrex is better (a prescription NSAID) because it’s supposedly easier on the stomach. Also, I usually take the oxycodone 1-2x day, and I only wished it caused constipationApril 10, 2013 at 2:18 am #59873 Thanks to everyone, for your replays. I think we might of got the upper hand finally. Ended up in the hospital Easter weekend, he was so sick with pain, vomiting, diarrhea, that he got dehydrated. They took Him off of V for a few days and restarted on a lower dose seems tt might have done the trick. Now we just hope that his pet scan In two weeks show good results.April 10, 2013 at 6:51 am #59874GillyParticipant Sorry for your rough time – my hubby has some joint pain – he doesnt take meds but he finds exercise really helps – he walks everywhere between meetings etc and does some physical exercise at the weekends – he may just be lucky but he has found it helps – all the best !
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