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May 22, 2013 at 11:11 am #21294
Yesterday my husband had scans and a brain MRI…he remains NED! He’s been on Zelboraf for 19 months and it’s still working! He had initial mixed results on Zelboraf (some tumors shrunk, new ones grew and some stayed stable), but for over a year, he has been stable and no evidence of disease on the scans. I just wanted to share this…so many people are afraid to take Zelboraf because it seems like a “last chance” drug. That’s what we thought when Mike first started it, but it has been his miracle drug. Not sure how long it will work, but we’re enjoying the ride…tomorrow he’ll celebrate his 40th birthday…a day we never imagined him being alive for when he was diagnosed with stage 4 cancer almost 2 1/2 years ago:).May 22, 2013 at 5:47 pm #60858msue5Participant That’s amazing and good news for those of us who will depend on Zelboraf at some point. I was on it but switched to Yervoy recently. I am interested in how his side effects have been. Any reduction of side effects from being on this for such a long time. Time to celebrate!
Mary SueMay 22, 2013 at 6:41 pm #60859Shirley ZParticipant
Wonderful news! I hope he continues to do well. It brings others so much hope to hear positive news.
Happy 40th tomorrow! I don’t think I ever looked forward to celebrating birthdays as much as I do now.
Shirley ZMay 22, 2013 at 9:43 pm #60860
The side effects for him have never been horrible. The rash is long gone. The biggest things he still deals with is some joint pain (it rarely slows him down and only gets bad after a day when he’s very physically active…hiking, playing ball with our kids, etc), horrible sun sensitivity (we’ve not figured out a solution to this problem except for staying inside) and some hit or miss GI issues (as long as he avoids dairy products, he seems to do better).May 22, 2013 at 11:51 pm #60861crburton28Participant My husband wears SPF clothing, gloves and hats and it allows him to enjoy the outdoors (in addition to sunscreen). Coolibar is a great place for the clothing.May 23, 2013 at 1:06 am #60862dkmcParticipant Great news!!!! I so love to hear it. Happy 40th! You are so right- enjoy every moment of the time given. KarenMay 23, 2013 at 8:45 pm #60863NYKarenParticipant Wonderful, fantastic news. Thanks so much for sharing it with us!
Happy 40th birhday. Enjoy.
KarenMay 24, 2013 at 10:45 pm #60864Dick_KParticipant
That really is great news, and what a fantastic birthday present. I hope there will be many more. Thanks for posting.
DickMay 28, 2013 at 3:49 pm #60865dallyup4Participant
That is fantastic news!!! I’m so happy to hear that, I have been on Zelboraf for 24 mos. now and NED for 9 mos. I am so excited to hear of others with this success. Thx for sharing.July 9, 2013 at 7:42 pm #60866 As of scans this morning (body scans only this time), he is now at 21 months on Zelboraf and NED! A few issues with his kidneys (multiple stones and an elevated creantin level) and slightly elevated liver enzymes, but nothing too bad. He remains on 6 Zelboraf a day.July 9, 2013 at 9:11 pm #60867zephyr66Participant That is TERRIFIC!!! congratulations to you both and happy 40th to him!!! keep up the great progress and hope there are many more good updates coming from you both.
sylviaJuly 9, 2013 at 9:20 pm #60868Dick_KParticipant
Great to hear this news. As a point of information, I have had off and on elevated creatin and bilirubin levels. I made a conscious decision to make sure I stay well hydrated. At my check-up last week, both were the best they’ve been in a long time. Anyway, 21 months and NED, wow, keep it up.
DickJuly 10, 2013 at 6:26 pm #60869Linda56Participant
That’s very good news and happy birthday. This is the kind of news that we are looking for !
I’m on Zelboraf for 11 months now and since my last scan two months ago there was no evidence of disease anymore. Next monday, I have a new scan. Hopefully I’m also on the wonderful road of NED.
Kind regards. LindaAugust 11, 2013 at 10:22 pm #60870CabronicationParticipant
So good to hear such positive news when taking Zelboraf can be so challenging. I’m really struggling with joint and muscle pain and only on day 10. Have red under skin painful nodules, awful rash?
Had to reduce myself to 2 & 2 tablets for the past two days. Hearing positive stories like yours, makes me want to try and cope with the side effects a little longer. Well done you…may the NED continue.August 12, 2013 at 11:11 am #60871tamieParticipant
It is great to read your report. My husband is only 7 weeks on Zelboraf. Side effects were terrible during the last 4 weeks. Some of you helped me as he was running very high fever for 2 weeks but as many of you said: After overcoming the first 4 weeks of side effects and additional 2 weeks high fever – he is functioning well on 6 pills a day. As we start coming back to routine I am very worried about the future so hearing your experience being on Zelboraf 19, and 21 month is really helpful for me. Happy birthday and many many more! Tammie
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