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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)
I don’t keep up with the forum as much as previously, but that is because of excellent results. So here is the scoop:
Diagnosed in January 2011 with Stage IV and after several early resection surgeries (small bowel and lung) completed Yervoy infusions. Shortly after what appeared to be progression I began Zelboraf (Braf) treatment following a crainotomy and gamma knife. This month will mark 5 years on Zelboraf (just behind DickK !). Scans have been NED for the last 3.5+/- years.
Still taking Zelboraf since side effects are manageable, but considering drug holidays …
Cathrine, Thanks so much for this forum and all that you do for the community of melanoma patients and caregivers – it is such a blessing.
Glad to hear that you and Bruce are still doing well. Also wanted to chime in that next month makes 4 years of successful Zelboraf treatment for my husband (starting in October 2011). We have decided to start counting in years, and not months! We hope to continue following your lead Dick. That is incredible news! It gives us all hope. My husband is just over 40 months on Zelboraf and has had NED for almost 3 years. I keep telling him to continue following in your footsteps. My husband had mixed results initially with Zelboraf…some tumors shrunk, some grew, some disappeared completely and some new ones appeared. He stayed on it (because there really wasn’t another option at that point). After 4 months, things started all shrinking and by 6 months, he was NED. He remains on Zelboraf and remains NED 2+ years later. I know his results aren’t typical, but there is hope it can take a bit to work and for some patients it lasts longer than the 4-7 months. 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. The same thing happened to my husband…3 weeks after a NED PETscan, he had a seizure. Turns out it was necrossis from gamma knife that he had 8 months prior. Have they done an MRI to see if there’s new tumor, necrossis or bleeding? My husband has been on anti seizure meds and dexamethazone for almost a year since his seizure. The no driving for 6 months stunk, but other than the side effects of the meds, he has no other issues and has not had another seizure. Definitely push to get the MRI to figure out the cause and deal with what needs to happen next. My husband’s oncologist says No Way! There’s a chance of burns with the radiation. He ran one of the trials with Zelboraf, so he’s been using it awile. When my husband had gamma knife (and before any surgeries), he has to come off of the Zelboraf for 5 days, to let it get mostly out of his system. My husband has been on Zelboraf for 19 months…almost consistently. He dropped to 6 pills a day after a couple months on it, because his liver levels were off the charts, he had high fevers, awful chills and lost most of his hair. After dropping to 6 a day he has mild side effects…still the sun sensitivity, some joint pain, a rash that comes and goes and that’s about it. He’s been NED for over a year:). 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). My husband had a grand mal seizure in August of last year due to necrossis from gamma knife. It scared me to pieces. He was put on dexamethazone and Keppra and no driving for 6 months. Very frustrating for him not to be able to drive. I only worked part time, but ended up quitting, so I could stay home with him. We also had to teach our kids what to do in case of a seizure. Just an FYI, if you call your local EMS, they’ll put your information into their system, so if a call comes in from your house, they’ll know what to expect. Fortunately, so far, we only had one more scare. Did you feel your seizure coming on? We’ve been told you normally do, an both times Mike knew something was happening. The necrossis had been controlled with the medication, so no further treatment has been needed. seizures are so scary, but we’ve gotten comfortable with it. My husband had a huge brain met in October 2011. He had a craniotomy, followed 3 weeks later by gamma knife and has been brain tumor free since them. The craniotomy was scary, but actually the easiest surgery he had. 1 night in the ICU, 1 in a regular room and home the next day. Fitting the gamma knife frame was tough on him, but short-lived (the placement took about 30 minutes and he was loopy at the time). The gamma knife itself was painless, although he did get a headache from the pressure of the frame…one percacet took care of the pain. Recovery took a long time–2-3 months, but virtually pain free. He was just tired. He was on decadron and seizure-meds. They stink, but are necessary. I think for gamma knife he was on the decadron for just a few days and the anti-seizure meds for a couple of months (doc was being cautious because of both surgeries). His doctor does not like to do WBR…not effective for melanoma and tries to stick with gamma knife when possible. The brain met was the scariest part so far, but so far, no more brain mets. Yeah! Are they offering it anywhere other than LA? My husband was on dexamethazone for a few months when they found his brain tumor, and through a craniotomy and gamma knife. He has also been on it for the past 8 months to control the swelling of brain necrosiss. It sucks! Mood swings, increased appetite, inability to sleep, puffy face, bloated belly, thinning of bones, mood swings, loss of muscle mass…did i say mood swings…they are awful (very controlling, anxious, angry, you get the gist). I guess it’s a necessary evil..they control the swelling and allow him to function day to day. At the beginning, he would also get very flushed and have a racing heart within a couple hours of taking it. That got better over time. Eating protein when he takes the steroids seems to help…he gets the shakes really bad when he doesn’t eat. Best wishes…it’s a tough drug to take, but it works. I think his thought process is that my husband has been stable with no evidence of disease for a year. We’re not absolutey sure why he wants him to stop it. I think it’s mostly to see if he will progress without it, or if he’ll stay stable. Kind of a scary thought. He just got home from a conference where they had some discussions about this. At least that’s what I understand. He does know Zelboraf well…he did one of the trials with it. The longest he had anyone on it (through the trial) is 2 years before he progressed.