Home Forums Melanoma Diagnosis: Stage IV anyone stop taking Zelboraf because of ned?

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  • #21946
    dallyup4
    Participant

    Hi everyone, haven’t posted for awhile. A little history: diagnosed 7/2010 stage IV, lungs, liver, pelvis and after a couple of months, brain mets. Unsuccessful immunotherapy, couldn’t handle the IL2, chemo, pelvis surgery, 2 brain surgeries etc. Started zelboraf thru trial in may of 2011 and have continued until now about 3 yrs. My scans have been clear, as of today, for 20 months! Was taking 4×2 a day until about 6 mos. back then 3×2 a day. Doc was always addiment about not stopping treatment as it would come back. Today, he tells me ‘congratulations, you’ve graduated! I want you to stop treatment! ” Needless to say I was shocked, I couldn’t think of questions at the time but now I have many. I trust this doctor completely, he saved my life!

    I’m excited but scared. Has anyone gone off of Zelboraf successfully?

    I am writing down my questions to ask him tomorrow but looking for some of your expert info out there.

    Thanks, Susan

    #64243
    tamie
    Participant

    Hi,

    Happy to hear you are NED, and please share with us what your doctor said.

    My husband is 10 months on Zelboraf and while the scan shows the medication works and the met shrinke, we too, are under the impression that stopping it might cause immediate growth. It was not easy to convince our doctor to reduce dose to 2×2 because of severe side effects. Lately I reard that after long time if you stop and then re-start it works as if it is new medication. Maybe this is what the doctor trys to do – keep it works for a long run. I heard it works in a licratory but only one triaql on human.

    So – hope it works for you. Will wait to hear

    Tammie

    #64244
    dallyup4
    Participant

    Hi Tammie, glad to hear your husband is doing well. My doctor was hard to convince reducing the dose down to 3 x 2 and said that less than that had shown to be not as effective so he wouldn’t go down to 2 x 2.

    As I said, I was so surprised today when he said I could quit the treatment altogether, I couldn’t think about questions I have. And this has nothing to do with the side effects as I have had those all along and they have not gotten worse. I will be talking to him further in the next few days.

    He basically told me that the trial for zelboraf had been for 2 yrs and their research had shown that if I continue taking it my body will develop a resistance to it and they don’t want that to happen. Keep in mind that I have been taking it for 3 years, 8 pills a day until a few months ago when he reduced it down to 6 per day and I have been basically ned for 20 months. I am very blessed.

    So he said to stop taking them altogether and I will do 2 more quarterly scans unless something comes up before that, then I can just get checked close to home after the next 6 months is clear. It didn’t seem like it was a ‘break’. I go to MD Anderson I Houston and I live about 4 hours away. Still have my mri on my brain tomorrow but not worried about that too much. I will write more when I learn more. Good luck to your husband.

    #64245
    dallyup4
    Participant

    Catherine, I read your posts to Kat re: stage IV ned. What is your opinion about what my dr. said about the zelboraf. I wasn’t having any more problems than previously as far as side effects.

    Not sure I like this watch and wait stuff either. I am of course braf pos. Seems if the zel. was working then why stop.

    Any stats on how long others have stayed ned after quiting the treatment?

    Thanks, just a little scared tonight.

    Susan

    #64246
    tamie
    Participant

    Hi,

    I understand your worry, but I believe your doctor knows what he or she is doing.

    Most research on Zelboraf focused on its ability to reduce the mets and it is not long enough in use for us to learn all the small variations. Lately, there have been many opinions about the fact that medication holiday is good for using Zelboraf, and that there might not be need to always take medication. Studies are still short term to know what happens when stopping it but our doctor also believes that monitoring and clinical impression is as important as scans. So I believe there is good reason and justification to stop medication and monitor progress. If anything change , they know now that you can retry zelboraf and pre-liminary outcomes show that it works as if yo ujust started it .Maybe you will win long period without medication and this foritself is a benefit. I don’t know how you deal with side effects – my husband’s are pretty bad.

    I think you should ask:

    1. Will you be able to return to zelboraf if there is a need after a while

    2. How are you going to make sure there is no fast change and ensure you stay NED

    3. What is the benefit for stopping it now

    4. Are there other medication available for you if Zelboraf stop working

    We will all look and watch you

    Tammie

    #64247
    Catherine Poole
    Keymaster

    I hope Dick weighs in on this. He has a few Zelboraf years on his belt and has only gone off it for short times. I can see why you might be cautious..but congrats!

    #64248
    Thandster
    Participant

    I am curious. I often read about the “many opinions” and “the latest research shows” etc that a holiday makes zel last longer. But I have never heard of a doc sucessfully prescribing 1 month on 2 weeks off or anything. The only actual research I’ve read is the original about rats who benefited. Even Dick has only had his holidays because of his bilirubin. His doctor is not taking him off to extend his NED status. Is there any study with humans that actually shows this drug holiday to be beneficial?

    Thank you,

    Thandster

    #64249
    endure9310
    Participant

    Hi,

    I’ve been on Zelboraf since middle of sept. 2011. Melanoma went from L Axilla to Lungs. So i’ve been fortunate in not having to be cut on too much.

    Guess I’m not technically NED as 2 small nodules (4mm,5mm) continue to show up on 3 to now 6 month routine CT scans. My doc says to stay with Z since its still working. I havn’t had to vacation or varie from 4X2 with Z, but stopped working about 5 weeks ago due to weak, woozie feeling at times and trouble focusing, not to mention short fuse (temper) flare ups.

    Staying with zelboraf for now!

    #64250
    Dick_K
    Participant

    This is a tough question, one that I ask myself from time to time. My situation is a little different so first a little bit of history.

    Following unsuccessful treatment in late 2009 with IL-2, I was fortunate enough to get into a phase 2 trial for what would be called Zelboraf. At trial start in March 2010, I had two tumors in my lung, one measuring 8.9 x 6.8 cm and the second 5.2 x 2.5 cm. A December 2010 PET/CT scan showed no hypermetabolic activity and the tumors continued to shrink until February 2012. (As of scans just last week, the tumors remain unchanged at 3.0 x .3 cm and 2.6 x .7 cm.)

    I had most of the common side effects with photosensitivity and some foot pain continuing today. Starting in September 2012 my liver began to be a concern with elevated bilirubin. At that time I went on a brief drug holiday and restarted in October 2012 at a lower dose of 720 mg twice a day. Since that time, I have had periodic drug holidays due to elevated bilirubin, but there has never been a preplanned program of holidays.

    So, here I am today, four plus years in the trial, adjusted to the side effects, but still showing tumors. Are the tumors dead cells? Are they scar tissue? Are they just waiting for no active treatment to begin growing again? I do not know the answer. My position with Zelboraf is that there is not enough documented evidence of what happens to those who stop at NED and it is probably still working for me.

    Unless either of those two conditions change or my liver requires it, I do not intend to stop Zelboraf. For me, I consider it a life safer.

    #64251
    tamie
    Participant

    Hi,

    When I asked our oncologist he said that up to now there is only proof fro mrats. However, there was the first clinical report from soneone at the Nederland and I think the article was at Science presenting only data from human.

    I think the main question we all wish to ask is: Is there anyway to know what happens while stopping? Is there a way to monitor and catch the fist sign of new growing and re-start before there is a real damange.If we knew that the new growth is slow, and Zelboraf can help i nreducing it again – there was lots of sense i nstopping. But since we do not really know 9if, when and where it will grow back – it is a risk that maybe come to the point of decision – how bad side effects are and what is worst?

    I wish we had answers…

    Tammie

    #64252
    dallyup4
    Participant

    Hi everyone, sorry it took so long for me to respond, I just got home Tues. night from Houston from my quarterlies, had to rest up a little as it always takes a lot out of me.

    Thx for all the responses.

    My mri brain scans came out clear again as well as as my ct scans. I spoke with the doctors PA as my doc was not in clinic. She said she was surprised he stopped treatment as well. She said she asked him for me about reducing my dosage again to 2×2 or extending the time between scans and he said that taking 2×2 hadn’t shown to be effective at all and would be the same as not taking it at all. He said there is just not enough data to know what to do. I am the only patient he knows about that has been on z for this long and my body has not built up a resistance to it nor has the disease found its way around it. So he said I have responded so well that we will try it with out the z. If it comes back then we will go back on the zel/mek combo, I think thats what she said. Since I have not built up a resistance to the z then likely it will work again.

    Dick has been on longer than me though but that is the only one I have read about. He is a warrior and my hero. I too had the iL2 in the very beginning along with interferon and 3 chemo drugs at the same time called ‘biochemo’ but developed pulmonary edema , fluid in the lungs, and they gave me a dose of Lasix, a strong diuretic, and my bp dropped to 60! I was able to continue after a couple of days with the biochemo but with the iL2 greatly reduced. I then had 6 sessions of chemo therapy. I then got into the trial for zel. and been on it continually till now. I took two 5 day breaks for the brain surgeries but no others.

    I am still amazed every day because in the beginning I had at least 4 tumors in my lungs ranging from 1.5 to 2.5 cm, 2 on my liver, 1.4 cm & 3.3 cm, 1 in my pelvis 3.9 cm and developed 4 tumors in my brain over the next year and 1/2. They are literally all gone! Why me? I don’t know, could it be the iL2, the chemo, the zel. or a combo, who knows. I am still scared it’s going to come back but I have been scared of that even on zel. so I am feeling a little better now. I just hope they can figure out soon what works for some and how it can work for all.

    Wait and see, wait and see! My thoughts and prayers are with you all and we just have to have faith.

    #64253
    Beatrice
    Participant

    Hi,

    I had two years of Zelboraf (went down rapidly to 2×2, my liver could not stand more) Became NED thanks to Zel and a bit of surgery. But I developped uveitis which led to stopping zel to save eye.

    Still NED, off Zel now for 4 months but watchful.

    Beatrice, stage IV 2009 – 3 chemos – sorafenib – inf A – Ipi- Zel

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