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December 4, 2013 at 11:52 pm #21697
I continue to be on a bit of a rollercoaster with my liver. Bilirubin – sometimes high, sometimes normal but today I start my 46th month on Zelboraf.
And a week ago today, I celebrated my birthday so in order to celebrate these two events, I decided to have a colonoscopy. Results were two small polyps and diverticulitus. I’ll need to wait two weeks for biopsy results.
When I first met with the gastroenterologist, he was concerned about my melanoma, Zelboraf, and going ahead with a colonoscopy. He went ahead and called Dr. Pavlick and her response was something like, “go for it, I expect him [me] to be at my [Dr. Pavlick’s] retirement”.
(Ha, I’ll even give myself another present in a few weeks with another prostate biopsy to see what that cancer is up to.)December 5, 2013 at 12:48 pm #63102Catherine PooleKeymaster
You are truly a wonder Dick in more ways than one. Enjoy your celebrations!December 5, 2013 at 2:36 pm #63103LinnyParticipant Dick, your story continues to be a source of hope and inspiration. I love it when you post news like this. Congratulations on reaching this milestone and I wish you many more!December 7, 2013 at 7:58 am #63104tamieParticipant Dear Dick,
This is so great .You have so many reasons to celebrate.
My husband is 5 months on Zelboraf with minimal dose – 2×2 due to very severe side effects. while ct scan shows very good results – no new met, significant shrinking of all the mets – side effects especially in his legs – are not easy to bare and really effect our quality of life. However – I hope we will get to celbrate 46 months on Z.
Keep doing well and contratualtions for all the good newes
TammieDecember 15, 2013 at 12:31 am #63105bettinParticipant
I am not sure I agree with you on a colonoscopy being a worthy birthday present but it is so good to read your updates and glad it came back ok!! Happy Birthday and to many more of those!!
BettinaDecember 21, 2013 at 12:12 am #63106
For those of you familiar with me, you know I have been on Zelboraf for quite some time and that over the past fifteen months or so, I have had issues with my bilirubin being high. At my six week NYU check-up this week, the bilirubin count came back quite low.
When I came home from NYU the mailman had delivered the news from my recent colonoscopy – no problem, repeat the exam in five years.
Today I met with my urologist about last week’s prostate biopsy (third biopsy since August 2011 diagnosis) – prostate cancer – NED!December 21, 2013 at 3:07 pm #63107Celeste MorrisParticipant
That is WONDERFUL news…on all three fronts!!! You better be sure to let us know how that colonoscopy recheck goes in 5 years! Have a wonderful holiday and a beautiful 2014! CelesteDecember 23, 2013 at 5:49 pm #63108
This is wonderful news ! Happy birthday
I am now in my 16th month of zelboraf. Not completely NED anymore, but nothing to worry about so far since the last petscan shows no growth.
Merry ChristmasJanuary 12, 2014 at 9:44 pm #63109
Last Friday I received the results of my last scan. After 4 months of anxiety NED again, what a wonderful news. Time for celebration after already 16 months of Zelboraf now.
LindaJanuary 12, 2014 at 10:34 pm #63110
Linda, congratulations!December 7, 2014 at 2:43 pm #63111 Hello everyone,
Thought I should post another update which will give hope to other fellow sufferers.
In March I changed from Zelboraf to Tafinlar which shows lesser side effects for sun sensitivity and skin problems. Tafinlar contains the same substance as Zelboraf, namely vemurafenib.
I had some troublesome months since April 2014 when small lesions started to appear on the scan.
There was among others a possible bone metastasis on the sacrum wing and the doctors were already planning some radiotherapy sessions, but since it didn’t hurt anymore, they decided that it was not appropriate to start the irradiation. They decided to wait until the next scan and the lesion showed unchanged after two months.
In the meantime, I had an accident and I broke my hip. This happened in August and during surgery they placed a hip prothesis. My scan of September showed also various lesions, but the doctors said that this was due to the accident.
And then in October 2014, I passed another petscan which shows NED again.
This is just to say that when the scan shows sometimes worrying lesions, that these can dissappear again after a few months. During all this time I didn’t stop my medication and I feel very good for the moment. I have very little side effects now and I’m fully recovered from my hip surgery.
I will be able to celebrate another wonderful Christmas together with my family.
Greetings to everyoneDecember 7, 2014 at 4:17 pm #63112
correction on my previous post :
Zelboraf contains vemurafenib
Tafinlar contains dabrafenib
which are both BRAF inhibitorsDecember 7, 2014 at 8:25 pm #63113saderdomerParticipant
Just an odd thought – I have Gilbert’s syndrome, which causes excursions in my liver enzymes. Bilirubin is not processed correctly. This is a benign condition. If I eat too much fish or vegetables (I try to avoid these) then my bilirubin goes high. The good news is that this condition is quite treatable with a nice steak. I prefer a rib eye medium. A NY strip will also do nicely. You might want to check it out.December 7, 2014 at 8:27 pm #63114
NED again; doesn’t get much better than that if you discount the hip (ouch).
DickDecember 8, 2014 at 5:29 pm #63115tamieParticipant
Dick, and Linda,
Great news. Happy you are holding on. Keep doing well Tammie
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