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May 28, 2014 at 2:43 am #21998RussianGuest
I previously listed this under the heading: Neoplastic Cell HMB45 and + ) S-100 negative…but due to discussion with Specialist, I have the following pros/cons needed to be addressed for the subject listed above to assist me in making a ‘decision’ on route to go for potential treatment opportunities available, thus hoping here to obtain responses ‘specific’ to concerns at hand, thus:
Well I met with the Specialist, and since I’m now a patient with metastatic melanoma, and have a specific genetic mutation (known as BRAF)…..he is stating that I may qualify for a research study to evaluate treatment of it with two drugs given in sequence (one after the other).
The combination being studied would be: vemurafenib (also know as Zelboraf) and High Dose Interleukin-2 (abbreviated as HD IL-2, know as Proleukin.
Does anyone have any information, and or experiences with either, in order that it may assist me in considering a decision as to one treatment, or both (one after the other) in a future research study of which I may qualify?
Any pros/cons…..or things to consider in assisting with my decision.
Note: Originally, diagnosed with Stage IIIA melanoma of right forearm (Nov. 2010)….successfully removed and margins incised with taking ‘wait and see’ approach’… then reoccurring melanoma in small spot above right hip (of which was successfully surgically removed and incised margins surrounding it when removed-appx. Nov. 2013. Had recent scan in early May, and 2 spots showed, one concerning above right buttock……….biopsy taken, and result was positive-of which is my current position now in considering research options listed above.
I’m good health, and taking no medications.May 28, 2014 at 3:50 pm #64535
I think I answered this previously. This is a trial that is pretty new. You should know that IL2 especially high dose is very toxic and requires hospitalization. How this trial compares with other is not known. But there are many options that are less toxic, you can get the BRAF agents without going into a trial. There are also very promising immunotherapies, Yervoy and PD1 to consider. I would look at options before deciding on a trial.October 28, 2014 at 12:47 am #64536AnonymousGuest Update……I decided not to try the HD-IL2……instead accepted option to try Trametinib (Mekinist) along with Dabrafenib (Tafinlar)…….after period of appx. 3 months only side effects of chills, and some fatigue were the most prevelant. Received scan, however, scan was mixed. There was some growth, along with some shrinkage.
Therefore, Specialist is offering another option….. 4 dose (every 3 weeks) treatment of Yervoy (ipilimumab).
Side effects have to be watched (knowing diarrhea is one of the worse), however considering? Anyone have any pro/cons considering.
I’m in good health, and trying to progress to stop the spread.
RussianOctober 28, 2014 at 5:36 am #64537odonoghue80Participant
If you are young and in good health, I would imagine you can deal with Yervoy pretty easily. I did Yervoy over two years ago and I didn’t have any side effects. At the time, I was working full time and didn’t have anything preventing me from working. I did think at around my fourth infusion I noticed some fatigue was settling in, but overall a very tolerable treatment. However, for me it did not work, but those who does have a response, can have durable response, which is good. Wish luck.October 28, 2014 at 11:25 am #64538 Russian,
Where are you located? I am guessing in Europe? If so, I have found some promising trials in locations across Europe: the yervoy/Pd1 combination trial, and the PDL trial. I will be happy to list if you tell me your preference for location.October 28, 2014 at 7:27 pm #64539AnonymousGuest
Thanks for the responses. I live in U.S..
Considering starting treatment in a week or two.October 28, 2014 at 9:21 pm #64540
Ok, you fooled me by your screen name! There are a lot of promising trials out there to consider, certainly, I would look at the IPI/PD1 combination or any of the PD1 trials with BRAF drugs.
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