Vemurafenib Information Please

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DickK
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Vemurafenib Information Please

Post by DickK » Sat Jul 27, 2019 8:08 am

I haven’t been around much, apologies. Gardening is a passion of mine and I’ve been spending a lot of time at it, we even hosted our first garden tour in over ten years. But, I’m looking for some guidance.

In March 2010 I started in a phase 2 clinical trial of what would become vemurafenib, Zelboraf. That was followed by a follow on study that I still participate in. In December 2010 my PET/CT scans stopped showing any hypermetabolic activity and the two lung tumors that show on CT, stopped shrinking in February 2012. Ever since February 2012 the tumors have not changed and my doctor believes what shows on the scans could be scar tissue.

We are now contemplating stopping medication. I’m looking for any comments from others that have been on vemurafenib and stopped due to being NED.

Catherine Poole
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Re: Vemurafenib Information Please

Post by Catherine Poole » Mon Jul 29, 2019 7:04 am

Happy to hear you are gardening up a storm. I have some weeds you could take care of..
You've been on this drug for a long time and I would agree you might be due for a vacation from zelboraf. It is amazing you have been able to take it this long. I know it might give you security to keep the melanoma at bay but your immune system has done its job. Talk it over with your medical team at length and then your family.. I'm here you know too, call me and we can talk it over too. Take good care..
Catherine M. Poole, President/Founder
Melanoma International Foundation

DickK
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Re: Vemurafenib Information Please

Post by DickK » Tue Jul 30, 2019 2:59 am

Thanks Catherine. I meet with Dr. Pavlick today and I’ll let you know my decision. (By the way, I actually enjoy weeding.)

Catherine Poole
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Re: Vemurafenib Information Please

Post by Catherine Poole » Tue Jul 30, 2019 7:02 am

Dick, please visit my house! I can't find my garden for the weeds. I send your query to some of our scientific board for their opinion too. Stay tuned..
Catherine M. Poole, President/Founder
Melanoma International Foundation

Catherine Poole
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Re: Vemurafenib Information Please

Post by Catherine Poole » Tue Jul 30, 2019 7:58 am

Here is the concensus of our experts: "Tough call. We don't really know about the ability to stop without risk of recurrence. This would be a long conversation with a patient of mine. The number of years that passed supports the idea of stopping, along with the description of there not being any evidence of active disease on scans. But this is a very hard call to advise from a distance. "

Hopefully you will see it before your visit.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Catherine Poole
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Joined: Wed Jan 02, 2008 12:09 am

Re: Vemurafenib Information Please

Post by Catherine Poole » Tue Jul 30, 2019 8:01 am

Catherine Poole wrote:
Tue Jul 30, 2019 7:58 am
Here is the concensus of our experts: "Tough call. We don't really know about the ability to stop without risk of recurrence. This would be a long conversation with a patient of mine. The number of years that passed supports the idea of stopping, along with the description of there not being any evidence of active disease on scans. But this is a very hard call to advise from a distance. "

Hopefully you will see it before your visit.
Catherine M. Poole, President/Founder
Melanoma International Foundation

DickK
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Re: Vemurafenib Information Please

Post by DickK » Tue Jul 30, 2019 2:24 pm

Well I pulled the plug, I am no longer taking vemurafenib. Dr. Pavlick is very certain that what shows on the scans is scar tissue, so sure, they do not do biopsies in similar cases to confirm any more.

I’ve been very lucky with the long term results and tolerance I’ve had. There is a risk of developing drug resistance. If having stopped and there is a recurrence I can go back on the drug. If I stayed and it became resistant, I would need to find another drug.

I will continue with a schedule of three month checkups with her as well as full derm exams. Also, for the first year, scans every three months instead of the current six month scan schedule.

marta010
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Re: Vemurafenib Information Please

Post by marta010 » Fri Aug 02, 2019 7:20 am

Hi Dick - not exactly the same situation as yours, but my husband has been on Tafinlar for 6 years and is in the process of tapering off. He's pretty much NEAD like you but also on Keytruda so we still have a safety net thru the end of this year. I wanted to let you know how inspirational your story was when he was first diagnosed in 2012. His first treatment was Zelboraf (and gamma knife) but was only on it for 9 months before progression - I held out hope that he would be a long term responder like you through the entire time. Sending prayers for many years of gardening (and weeding)!

Ann

jmmm
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Re: Vemurafenib Information Please

Post by jmmm » Thu Sep 12, 2019 8:29 pm

I also have not checked in too much lately since there aren't too many patients that have been taking Vemurafenib (Zelboraf) on a long-term basis. This October will make 8 years of treatment on Zelboraf for me!!!

For a little background, I started Zelboraf in October 2011 shortly after its FDA approval, following a course of four doses of Yervoy (mid 2011) shortly after its FDA approval as well. Quickly following my Yervoy treatments (maybe before it had an opportunity to be of benefit?) I ended up with multiple additional metastasis including lung, and brain metastasis which led to a thoracotomy, craniotomy, and gamma knife. I started Zelboraf about one month before my crainotomy to see if there would be any blood-brain barrier response (my brain MRIs ended up in a Jan. 2013 issue of the Journal of Clinical Oncology (lucky me:)). For me it seemed to at least control the size of my metastasis.

Now after a long and durable response (Similar to Dick K.) I have contemplated and discussed at length with my previous oncologist (a respected melanoma specialist), and my current oncologist (who hasn't been practicing very long, but is young, sharp, and practices at a nationally ranked cancer center) about continuation of treatment. I have also done my best to look at the few published retrospective papers regarding patients who have ceased treatment, and watched for respected opinions (typically ASCO discussions) on the matter. In summary, there just isn't enough data to positively support either decision, and as a patient you need to make the best personal decision.

So there you have it, not a real firm answer I know. Sorry!

Dick K indicated that he as now ceased treatment (yea!). I on the other hand started with an intermittent dosing regimen at about the 5 year point; and for the past almost 3 years I have been mimicking an ongoing trial at a ratio of 5 weeks on treatment to 3 weeks off treatment. I am not rigid with my schedule which allows me to try to plan drug holidays to coincide with vacations as much as possible which is nice. Although it takes about 5 days for the side effects to mostly subside, and only a couple of days for them to return after restarting Zelboraf. Not sure what the future will look like, but if I continue to do well I hope to slide to a 50% on 50% off schedule. Once my youngest son graduates high school in 2022 (never thought I might plan for that !!!) I may take a different viewpoint on continuing treatment. Of course there is much work being done to advance treatment options. I am certainly blessed to have had the opportunity to watch it unfold in real time, and am very thankful for Catherine and this support of this forum.

For monitoring I get monthly labs, CTs every 6 months (recently spaced out from every 4 months), and yearly brain MRIs.

Best of luck to all of us patients and you beloved caregivers contemplating such difficult decisions.

-Mike (husband of JMM)

Catherine Poole
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Re: Vemurafenib Information Please

Post by Catherine Poole » Mon Sep 16, 2019 7:15 am

Thank you so much for sharing your story! You and Dick certainly will help other patients in their journey. I think researchers too would be interested and I will share with our scientific board. Best wishes for continued good health!
Catherine M. Poole, President/Founder
Melanoma International Foundation

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