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October 25, 2012 at 12:20 pm #20709
This posting is an attempt to summarize an earlier post that has gotten a little leggy as I have added to it over time. The original can be found at
It all started in 1998 with a Clarks level IV mole removal from my cheek. Clear margins and clear SNB and I started a regimen of annual follow-ups and x-rays. In 2009 after a chest x-ray, CT scan, two lung needle biopsies, and a PET scan – metastatic melanoma in my lungs.
I was referred to Yale New Haven Cancer Center and went through High Dose IL-2. The IL-2 is unsuccessful and I’m told I have six to eight months until end of life. But I then learned of a clinical trial at NYU that I could be eligible for. After undergoing lung surgery to get more tumor tissue for testing, I find out I have the BRAF V600E mutation. I pass the other screening tests and in March 2010 I started in the phase II trial for what will become Zelboraf.
Three weeks after the trial start my symptoms are greatly improved. In another three weeks, the first scans show shrinkage of a little more than 33%. Subsequent scans show continued tumor shrinkage and in December 2010, the PET/CT scan shows about 95% shrinkage AND no active growth. For the next year there continues to be shrinkage and has now been stable since December 2011; my oncologist believes what still shows is probably scar tissue.
During this entire period, I have had other cancer issues to deal with. In 2007 I had a partial parotidectomy for a myoepithelial carcinoma. In 2010 I had Mohs micrographic surgery for a squamous-cell carcinoma (a Zelboraf side effect.) In 2011 I found out I have prostate cancer. While on Zelboraf, I have had almost all of the side effects with most being tolerable.
Yesterday I got the results of scans from the beginning of the week – all is good – everything is stable – no changes. Side effects are another matter. For the second test in a row, my bilirubin is too high and I will start my second one week holiday from Zelboraf. Hopefully a retest next week will show the bilirubin returning to normal and I will restart Zelboraf but probably at a reduced rate of 720 mg twice a day.
I am 32 months on Zelboraf now and I’m looking forward to breaking that 3 year mark, I hope bilirubin cooperates.November 6, 2012 at 7:19 pm #57121
My regularly scheduled appointment last week was cancelled because of the difficulties so much of New York was experiencing as a result of hurricane Sandy. I was able to schedule my blood work in Connecticut yesterday and today I found out the results were good and I will be able to restart Zelboraf, but at the lowered dosage of 720mg 2x per day.
Sadly, all the investigational drugs were lost in the flooding at NYU and they have had to order new supplies. I’m hoping they get delivery by Thursday.
DickNovember 6, 2012 at 9:54 pm #57122KerriParticipant
I’m so surprised you have been on Zelboraf for so long. When I asked my doc about just staying on Zelboraf he said eventually you become immune to it and it stops working. He did say it’s different for everyone, but like you, my side affects are very tolerable and if I could just do Zelboraf for the rest of my life I would.
I hope your order is delivered soon!
KerriNovember 6, 2012 at 10:10 pm #57123Shirley ZParticipant
Happy to hear your bloodwork was good and you were able to restart the Zelboraf.
Its great to hear you have had long term success with it.
Hurricane Sandy brought so much devastation to the east coast. Its heartbreaking to see how quickly so many people’s lives can change. We live in NE OH and sustained quite a bit of damage around the area. Some people were without power for a week. Its scary to see how far out this storm went.
Praying this Noreaster coming in will not effect you.
Shirley ZNovember 11, 2012 at 9:13 pm #57124bettinParticipant
it’s always good to read from you- your other cancer issues sound horrendous but the fact that you are still on Zelboraf is just uplifiting- and I keep everything crossed for the 3 year mark! Any more ideas by now what makes you so special
Hope your bilirubin and side effects behave and you’ll be back on the drug for a LONG time!
BettinaNovember 29, 2012 at 9:19 pm #57125crburton28Participant
I hope you are doing well. My husband has to stop taking Zelboraf while he receives radiation for brain mets, probably about 3 weeks. Did you notice your sideeffects disappear when you were off? And have you had a scan since? Did your tumors grow any during that time? Unfortunately the Zelboraf didn’t break blood brain barrier and this horrific cancer found a new place to grow.
CarlaDecember 9, 2012 at 9:43 pm #57126
I was able to get a resupply of Zelboraf on November 7th.
I had to drive to NYC the day the Noreaster was to hit Connecticut. We got a total of about 8″ of snow and there was about 2″ on the roads when I got home. Whew! Sorry about your power, we lost power twice last year for about a week each time and my wife “strongly suggested” we get a small generator. Only lost power for about 9 hours with Sandy, never turned the generator on.
Still no reason for Zelboraf working so well for me.
I hope your husbands radiation goes well. I did not notice any side effect change while I was off Zelboraf.
March 3, 2013 is a target date for me. After a worrying six weeks, I have my eyes fixed on crossing that target date as it is my “3 year on Zelboraf” date. After the hiccups caused by hurricane Sandy, I had my blood tested locally and having my bilirubin come back in line, I was placed on 720 mm 2x per day starting on November 7th. I had clean scans on December 3rd, continued good blood work on December 5th, and I am continuing on Zelboraf at 720 mm 2x per day. No more scans or tests until next year.
On another matter, I had a PSA last week and my urologist does not think I need another prostate biopsy for six months; it is a very slow cancer.
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