1. Should you be dealing with brain mets from melanoma, make sure you are seeing a melanoma specialist...not just an oncologist. Things are constantly changing, updating, and improving (thank goodness!!!!). You need someone on the cutting edge of this data.
2. A primary melanoma lesion that is ulcerated is unfortunately a bad prognostic sign for melanoma progression period, as well as for brain mets, as this first report noted.
3. Re: "high peritumoral T-cell infiltrates are associated with prolonged survival"....in plain English....if there are a lot of T-cells around the tumor, they are trying to kill it and you are more likely to live. Now....we just gotta figure out how to make that happen!!!
4. Treatment with ipi, which has about a 20% response rate in melanoma patients' tumors in their body, is showing the same response rate for melanoma brain mets. (Back to those T-cells again!!!)
5. A combination of ipi and stereotactic radiation is looking to be a combo that is more effective than either on their own, with patients having brain mets showing an overall survival of 28.3 months when given both, but only an OS of 6.9 months when treated with SRS alone. Additionally, the next study shows patients treated with ipi but having had no brain mets had about the same survival as patients with brain mets, when treated with both ipi and SRS.
6. BRAF inhibitors. Ok...first you need to be BRAF positive, with the V600E mutation for these to work. (Researchers are working on other treatments for wild types and NRAS.) There are two BRAF inhibitors currently on the market. The first was Vemurafenib, now named Zelboraf. The second is Dabrafenib, now named Tafinlar. A recent study with Vemurafenib showed a 50% CNS (central nervous system) response rate...that means brain. The last study posted shows that for some reason, when patients were started on the BRAF inhibitor (BRAFi) POST brain tumor, their survival was much increased (to 23.2 months) as opposed to patients who developed a brain met when already on it. Clearly, we have much to learn. BRAF inhibitors are known for some pretty sucky side effects and for their limited time of action, as tumors frequently learn to work around them and start to grow again. Yet, there are those among us who have had great success taking them for years. (Go Dick_K and JMMM!!!!!!) [See my post on new ways to use BRAFi on Jan 13, 2013.]
SO....if in need, check with the authors of these papers. Call them or their institution. Or, get your doc to do so. Things are changing rapidly....and it's about time. Don't miss out on any treatment opportunity that may help you.
Yours, c
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Thanks for "your take"! Makes it all very clear. I'm glad they are making so much progress in this area! Melanoma + Brain = Extremely Scary!
ReplyDeleteHow long have you been in the trial now? I did my last infusion on April 5 ..Stage 4 NED 3 years, 2 months, 1 week and 2 days. Will be nice to just go for check up and scans now! I can't believe some of the later people got out of some of the peptide injections! Oh such is life! Hope you are doing well! I don't do regular blogs anymore...working on my wensite and in FB all the time!
ReplyDeleteSince the peptide vaccines did absolutely nothing except sequester T-cells that could have been fighting melanoma....I hope NO other patients have to endure that misery EVER again!!!! Glad you are doing well!
Deletethank you
ReplyDeleteYou sure are diligent about your homework. I'm sure others find solace in your take on treatments and the science of it all...knowing pros and cons surely must help make these personal treatment choices.
ReplyDeleteThey are still using the peptides, just not as many...I have read they are using some of the peptides as stand-alone vaccines at other institutions in c.trials!
ReplyDeleteYes, Lynn. I have noted before that there are now many arms of our study that are given no vaccines and at least one in which they were administered only 4 of the 6 we were given. However, if you look at my blog post of May 11, you will see two articles that came out in May and April that report that our EXACT vaccines do nothing except sequester and even kill T-cells in the area around the injection site. It would be unconscionable to continue to administer them at all (in the depot fashion with Freund's adjuvant [IFA]) in light of this data. I will be talking to Dr. Weber about that this week. Various other vaccines like MAGE3 and some dendritic cell vaccines are certainly being utilized in many studies. Currently, I don't know of any trials that consist solely of peptide vaccines. However, the articles point out that even the ones we were given might work if they were not administered with a substance that created a depot situation. So, hopefully that knowledge will soon be put to good use.
ReplyDeleteI'll check out your post...I am just glad it's behind me...those were not a walk in the park...those suckers hurt and I still have lumps!
ReplyDeleteI found this article after I started the trial...so it's not like it wasn't considered before....http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3218563/
ReplyDeleteyou could add another option: the old school option:
ReplyDeletecombination of temodal (aka temozolimide: an older chemo which can pass the blood brain barrier) and radiation plus adding curcumin (plus black pepper for increased bioavailability) and green sencha tea to your diet every day. Worked for us with 12 small melanoma brain mets.
Hi Martin,
ReplyDeleteMy "take" isn't my opinion...it is a translation of the medical studies I discussed in prior posts, so that more people can understand them. I am so glad your solution worked for you and I hope it continues to. I have discussed the value of curcumin twice on this blog...last in a July 2013 post. However, I have never seen a study that notes pepper increases its bioavailability. Additionally, while Temodar (temozolimide, pro drug of dacarbazine...which ever name you wish to give it) does cross the blood brain barrier....current opinion is that we have much better options out there for folks now. See the discussion given by Dr. Ribas in the November 6, 2013 post. I hope you have continued success and freedom from the need for any additional melanoma treatments. -c