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June 6, 2014 at 6:52 am #22016
I wonder if any of you have experience with the Tafinilar.
My husband has been on Zelboraf for a year and as for the Met. it works fine. He is on half dose (2×2) but due to a very severe rash on his feet which became very toxic, out onc decide to move into the Tafiniolar which he says is actually the same. he wants us to start with the full dose – 2×2 and see how it works. I wonder what are the side effects, is it really better than the Zelboraf. Also we forgot to ask him whether the effect of the sun is the same. Thank you
TammieJune 6, 2014 at 6:54 am #64630
Ops, it is Tafinlar not as I wrote!
TammieJune 6, 2014 at 11:37 am #64631
Taflinar (dabrafenib) is not the same as Zelboraf although a BRAF inhibitor with similar mechanisms. It works best according to recent studies presented at ASCO combined with the Mek inhibitor, Mekinist. There is an issue with fevers with this drug. Are you in the U.S.? If so, the combination of the two is approved for perscription. It sounds like your husband is not progressing with the zelboraf, correct? I would discuss the combination with your doctor.June 6, 2014 at 2:48 pm #64632 Dear Catherin,
Thank you for your reply. We are in Israel – treated by Dr. Shecter in Ella institiute. The reason he decided to try the other drug is the situation with my husband’s legs. Beside- it is working well. He though side effect will be bettter. Do you know if the Tafinlar also necessitates to care from the sun? I haven’t find anything about sensitivity to sun.
Dr. Shecter did not mention the other drug – I ahve n oidea if it is approved in Israel – I will find out
TammieJune 6, 2014 at 11:46 pm #64633VioletaParticipant
From what I know sun sensitivity is not an adverse effect of Dabrafenib/tafinlar. In general is better tolerated and easier to be taken (4 small tablets 2 x 2 per day. my best wishes.June 10, 2014 at 2:54 pm #64634 Finally have some info on Israel and the braf/mek. Tafinlar is approved and available commercially in Israel since May 2014. Mekinist is not yet approved but patients can get access to Tafinlar+Mekinist through the Named Patient Program (NPP) which is up and running locally. The HCP would need to reach out to GSK Israel to enroll the patient. Best way to make contact with the local office is the following phone number: +97239297100June 11, 2014 at 6:54 pm #64635 Hi Catherine,
Thank you so much
I will look for it tomrrow
TammieJune 13, 2014 at 2:57 am #64636
Your help is such a great thing! I called GSK yesterday and found that they can certainly give us the Mekinist as a compassion therapy but our Oncologist needs to apply for it. We mailed him yesterday and now wait for his reply. Meanwhile, we are still waiting for the insurance to approve of the Tafinlar which will probably take few more days. So we do hope to get it, and maybe get rid of the really problematic side effect of the Zelbouraf. I will update TammieJune 13, 2014 at 11:05 am #64637
So happy this will help you. Let me know how it goes.June 14, 2014 at 6:33 am #64638
The need to make decision all the time is not easy!
Well – as I mentioned my husband is on Zelboraf for a year. It is working well, only side effects are pretty bad, therefore Prof. Shecter suggested him to try the Tafinlar.
I read of the combination with Mekinist and following your suggestion, called GSK and they can give us compassion therapy. However – we read that 1. Tafinlar side effects are not easy – high fever,skin problem and maybe kidneys, 2. We read that when the FDA first approved it a year ago they did not recommend to mix it with another medication 3. We did not find outcome studies to point to its efficacy
So – we have ni idea what is the best way
TammieJune 14, 2014 at 9:52 am #64639tcellParticipant
Just a note from me as I have been taking Tafinlar / Mek through the named patient program here at the Vienna University hospital now for 4 months.
I was diagnosed with stage 4, mets on lung, liver, peritoneal, pleura, adrenals and 2 bone mets.
First scan in May showed significant shrinkage of all mets and stable desease in bones where it is known that it takes longer for the bone mets to react. On the CT it is also not possible to tell which mets are still active.
I started on Tafinlar as single drug when I was still in hospital as it took them a few days to ship the Medinist. This is when I had one day of high fevers. Since then no side effects at all.
Everybody is different but one thing that does matter in my opinion is your attitude towards the meds you take. Personally I try to avoid studying all those side effects in detail and to anticipate all that could possibly happen to me. I was looking forward to getting the first dose of the combo and probably would be dead by now if it did not exist. My oncologist says that iit is better suited than Zel, especially for younger people who want to be outside not having to deal with the high photo sensitivity issues. Also important to know: the combo has less side effects than Tafinlar on its own.
These are only my personal thoughts and experiences and nobody will be able to tell if they work that well for your husband unless you decide to try. I imagine that this is not easy when Zel has already proven to be effective.June 14, 2014 at 12:27 pm #64640
Thank you so much for your post.
During the last year I feel that I need to fight for Michael’s life and I do. It became the center of my life and some times it is not easy to decide what to do since there are no garantees and I know of no one who is in our position. So reading about your experience in particular – and being part of this forum in general -is really great for me. Tammie
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