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June 28, 2012 at 9:59 pm #20416Leisab66Participant
Hello, I’m Leisa and I’m 45 years old and currently have mets in my spleen,liver and a neck lymph node. I’ve already had an axillary dissection on my right arm and a couple of individual lymph nodes removed but once it showed in my spleen they decided to leave the surgery and start chemo.
My dilemma is that not only am I Braf- but I had a liver transplant in 1995 for which I am very thankful. As a result I am immunosuppressed and ipilimumab would possibly cause my liver to reject (a bad, bad thing!)
I’m currently being treated with Fotemustine but I’ve only had three treatments so I don’t know if it’s being effective, I feel quite good really!
Does anyone think the pd1L stuff might be an option? I realize I’m up the creek without a paddle here but I’m trying very hard to be positive and hopeful.
Any ideas will be gratefully appreciated.
Cheers. LeisaJuly 1, 2012 at 2:11 pm #55101myside88Participant
I am not sure of your query of PD1L stuff.
But I would like you to carefully read the following article.
In my view, the most important is the last line of the last paragraph for BRAF WT Patients.
“Dr. Sosman stressed the importance of using tumor mutation profiling to identify novel drivers in the large percentage of patients with BRAF WT melanoma with undefined driver mutations.”
I am not sure which US Lab does this “tumor profiling” but maybe your doctor can suggest something and maybe this might help you screen different trials going over in US or other countries.
Best of Luck!
Abhinav SharmaJuly 8, 2012 at 12:44 am #55102bettinParticipant
anti-PDL1 is also a form of immunotherapy, like Ipi, so you would in all likelihood encounter the same problem.
There are now other forms of targeted therapy around (MEKi, other Kinase inhibitors) some of which are tested in BRAF neg Melanoma- you might want to investigate those. If you search the forum you’ll find a post on MEKi in BRAF neg Melanoma.
As for the article, they want to identify potential targets which in the future will hopefully help BRAF neg patients- so this will in all likelihood not provide you with a direct therapy option.
Wishing you all the best,
BettinaJuly 8, 2012 at 4:36 pm #55103AnonymousGuest
If you don’t mind, where are you getting the Fotemustine treatment? My oncologist is familiar with it but he said it’s not available in the US.
JeffJuly 9, 2012 at 8:22 am #55104Catherine PooleKeymaster
That is correct, that agent is only available outside the U.S. I haven’t read of any scientific findings about its response rates. How are you and your wife doing?July 9, 2012 at 8:35 am #55105Leisab66Participant
Thanks everone for the info. Jeff, I’m in Australia, I don’t know where fotemustine is available and I’m yet to see a response… Fingers crossed
LeisaJuly 9, 2012 at 1:04 pm #55106AnonymousGuest
Leisa & Catherine:
I Googled fortemustine and found it’s been approved for use on melanoma for sometime outside the US and several studies in the 2000-2005 time frame comparing it and decarbazine with fortemustine having a moderate advantage in the mortality curves. Both were well tollerated. What really set fortemustine apart though, was it’s ability to penetrate the blood-brain barrier much more effectively that decarbazine, thus reducing and stalling the formation of brain mets for melanoma and some other cancers. One extensive study including melanoma showed an approximate average of 6-9 months for brain mets to occur after diagnosis with decarbazine versus almost 2 years, for those who survived that long, when treated with fortemustine. To me, this is very significant and tells me that fortemustine would have the potential to basically eliminate concerns regarding brain mets for us. It might also explain the modest survival advantage fortemustine seemed to have over decarbazine for melanoma.
I also ran across a recent Italian phase 11 trial combining fortemustine with IPI (10 mg). It’s openning was announced at the conference in early 2011. Maybe some results were presented this year?
Anyway, I have to really wonder why fortemustine has not been approved for the US when there appears to be a rather substantial block of good quality data suggesting in may be preferable to decarbazine.
I hope it works well for you Leisa and might be rather effective combine with say IPI. Fingers are crossed but I’m also praying for you and everybody else with this horrible disease.
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