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October 8, 2014 at 4:45 am #22199
Hi Everyone, I have been posted several times during the last year, when my husband suferred from very severe side effcts from the Z , but during the last 3 months, being on 2×2 side effects reduced and he felt much better. A month ago in a check up , our oncologist said that the sickness is not active now. Near the original melanoma surgeary, that was 13 years ago, Michael felt somthing15 months ago. It was the reason for starting all the check ups for melanoma. It is internal, nothing can be seen outside, but we could feel it. Our oncologist said that we are lucky we can feel this metastasis , and this is our marker. Since he started Z it dissapeared and there have been very remarkable reduction of all the other metastasis. Few days ago, after 15 months of taking Zelboraf and not feeling this MM -it appeared again. We were not yet succeeded in contacting our oncologist, it is holidays in israel and probably nothing can happens in the next 2 weeks. We are terrified from thinking that it means Z is not effective any more, and this is a sign that the M started growing again. I think we will need to go for the next step. Does this grow means we need to stop the Z? Any suggestion? Thank you, TammieOctober 8, 2014 at 8:38 am #65569JBunyanParticipant Has he had a CT scan? This is usually the starter, although PET and MRI have their place, depending on the possible site.October 8, 2014 at 1:07 pm #65570 Hi,
Pet and CT scan in the past had wonderful results, but as for now,
we haven’t done any thing yet. We are waiting to hear from our oncologist ,and as you can imagine – waiting is not a pleasnat issue…
tammieOctober 8, 2014 at 1:54 pm #65571Catherine PooleKeymaster
I think patients here always have a Plan B should the initial therapy result in progression of disease. The Braf/Mek has now been proven to work better than Zelboraf alone, but not sure how that would work sequentially to the Zel. I would look for immunotherapy access, PD1 optimally, and IPI. Where are you located?October 8, 2014 at 5:52 pm #65572 We are in Israel. Mek is not yet approved here although I was told by the medicine company that they do give compassion therapy. Also PD1 is not yet approved but I know there are some trials so – once we meet our oncologist we will find more
Thank you for the adivce I will look for it
TammieOctober 20, 2014 at 5:47 pm #65573
Today we visited our oncologist. After 16 months of using zelboraf my husband has progressed and Prof. Shecter decided it is time to move on for Yervoy. Thank’s to this forum – I know what our oncologist is talking about and I have some idea what to expect and I am greatful to all of you. He planes to start with the 2 first dose and than check how it works, to finish all the 4 infusion if it works and to move on to Kyrtuda (I am not sure how to spell it ) if after 2 infusion it stops working. Any advice on side effects? On what we should expect? Starting zelboraf was very difficult for my husband. He suferred fro mall possible side effects and than were on 2×2 pills during the last year. Only about 2 mobnth ago he started feeling better and return to function almost normal, so we kind of fear the future. I will thank you for your advoce
TammieOctober 20, 2014 at 6:45 pm #65574Catherine PooleKeymaster
Sounds like a good plan to go to IPI and the Keytruda if he progresses. I think you may find the side affects from IPI to be less than Zelboraf, although it is very individual. I would not fear it though. The thing to watch for is diarrhea and report that immediately as it could progress into colitis. Otherwise, many have continued to go about their daily lives on IPI without issues. Let us know how it goes!
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