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August 14, 2014 at 12:01 pm #22136
At the end of the month I will have been on Zelboraf for 4 ½ years. Back in mid-May the phase 2 trial I was in was closed and I moved to a rollover study. One of the benefits of the rollover included reduced scan frequencies and doctor follow-ups every twelve weeks. Really looking forward to that!
Monday I had a derm exam and a small mole was taken off. This mole is the bump on the road; I learned yesterday it was melanoma. I’ll be calling a surgeon today to schedule a WLE. Ugh!August 15, 2014 at 2:22 am #65181AnnieoParticipant
I don’t know your particular circumstances but I thought I’d mention that I don’t get wider excisions anymore for any recurrences. I’ve had four since last December They just excise the lumps and lesions as they pop up. I think it has something to do with being Stage IV (in my case anyway) but I never actually asked why. I’d be interested to know.
I hope all goes well with your chat with surgeon and I hope this new bump of yours proves to be a ‘minor’ bump on your road. You sound to be in good spirits, which is a good way to be, if possible
AnneAugust 15, 2014 at 4:37 pm #65182
Dick has the best spirit around! Check him out in our video: http://melanomainternational.org/events-webinar/patient-experience-video
I really think he would make a fine movie star!
Hoping Dick this is just something minor as well! Keep in touch.August 20, 2014 at 9:42 pm #65183
So, last Wednesday I got a copy of my biopsy report – invasive melanoma, .55 millimeters in thickness. “There is no ulceration, dermal mitoses, regression, vascular invasion or peripheral invasion. The in situ component extends close to a peripheral edge of the specimen.”
Today I saw my oncologist and met with a surgeon and we all agreed that a WLE is in order. After that, things should be status quo. Whew!August 20, 2014 at 9:51 pm #65184
Sounds good. Do they think the Zelboraf has anything to do with it? Glad it is low risk!August 21, 2014 at 2:44 am #65185BNP68Participant That is great news. Very happy to hear that.August 21, 2014 at 9:40 am #65186JBunyanParticipant Glad to hear your news. In my situation, with BRAF wild, I believe that Zelboraf is not effective, but it seems to work for you (I assume BRAF mutant?)
Your latest “bump” at only .55 mm is very thin, so hopefully they “got” it all.August 21, 2014 at 3:54 pm #65187
Hi Catherine, yes in addition to Zelboraf causing cutaneous squamous cell carcinoma in some patients, some also have had new melanoma lesions. I now have had one of each, and I’m ready to stop; there are easier ways to lose weight rather than having parts of your body cut out.
JBunyan, I’m not sure if you were directing the “BRAF mutant” comment to me, but as I think about it, it fits! It might me a way of explaining to others my success. Thanks.August 21, 2014 at 6:55 pm #65188JBunyanParticipant
I got the information from the UK Macmillan (cancer support organisation) – a link
Hope you continue to improve!August 21, 2014 at 7:42 pm #65189
I understand the comment now seeing it in context, thanks. I think I’ll stick with my interpretation for family and friends, it gives me cause to chuckle.August 22, 2014 at 4:55 pm #65190Craig_GParticipant
I had great hope for Zelboraf, but alas, after 3 months it was pretty easy to see it wasn’t working for me.
In fact, after stopping the Z, I had two squamous cells removed, one precancerous, odd-looking thing removed, and one melanoma brain tumor removed. The brain tumor was more dramatic as I had a seizure at work, which gave me more attention than I ever wanted.
Currently getting two annoying tumors radiated, and of course a Cyber-knife from the crainiotomy.
Next on my schedule is 3 small skin melanomas removed.
I hope to start on MK-3475 at beginning of September.
So I conclude of lot of this could be the Z, but on the other hand, could just be me. At this point I don’t care, MK-3475 is my focus, my fifth experimental chemo drug, fingers crossed.
After the crainiotomy I was able to return to work after 4 days, with anti-seizure drugs and a little bit of pain killer. I hate taking drugs, but until I get the annoying tumors radiated, or removed, I don’t feel like I have a choice. They cut the Keppra dose in half, which really helped me out. Keppra makes me really sleepy.
CraigAugust 22, 2014 at 11:48 pm #65191
Craig, you certainly have great spirit through this. You are amazing. I hope you get fast tracked to the PD1 as I keep hearing amazing things about it from doctors and patients. Keep in touch! and hope your procedures go smoothly.August 23, 2014 at 7:44 pm #65192msue5Participant I was on Zelboraf for 6 wks and had 3 SCC that literally grew overnight. They were excised but it was decided to switch to Ipi which was controversial due to Lupus. They said I just couldn’t keep having excisions every week. This is still my plan C but I was wondering if the addition of MEK reduces the chances of developing SCC and Melanoma like it reduces the other side effects? Dick I think we all look to your success on Zelboraf and hope we are as successful when the time comes. I had dramatic positive results on Z but I had low tumor volume and Ipi was more appropriate but had a hard time convincing anyone to give me Ipi with Lupus but finally got it. According to BMS I was the first autoimmune patient to take Ipi and they (BMS) required blood work and urine tests weekly in addition to filling out checklist weekly instead of every 3 weeks.
Mary SueAugust 26, 2014 at 4:29 pm #65193GillyParticipant
My husband has also had 2 new MM lesions – he has been on zelboraf for 18 months – they were not sure if the new lesions were in transit mets as they were within 10cm of his wide-excised primary – but at biopsy they were the “same” melanoma – since he continues to respond in his other mets they are currently thinking they are Zelboraf induced secondaries – this is nearly as common as BCC’s in long term Zelboraf users according to our. Derm.He has since had 3cm wide excision.September 24, 2014 at 3:49 pm #65194 Well yesterday was an interesting day. In a variation of the bad news good news story line, mine is good news good news.
First the Good News
Yesterday, September 23rd, POTUS was visiting the UN. For those of you not familiar with New York City, when that happens, the east side of the city is basically shut down around the United Nations and traffic is in utter chaos. I take the FDR down the east side of Manhattan (right past the UN) but I encountered no traffic to speak of. An early arrival at the hospital probably was the real reason for the luck arriving as well as a mid-afternoon departure for home.
…and the other Good News
WLE went fine with no problems. No pain this morning and just a slight discomfort.
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