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January 26, 2014 at 2:46 am #21767odonoghue80Participant
Hi, I have not been able to post in a while after losing my language skills due to aphasia. I was losing my speech last summer and ended up needing a brain surgery. It turns out I had a lot of necrosis (from previous brain radiation) and not a new tumor, which was good, but it left me with communication deficiencies called aphasia. Fornutately I am working hard again to rehabilitate my speech, writing, reading, etc, so bare with me if something seems a bit off.
However, I will summarize my recent treatments for melanoma and just curious any thoughts on best trials and where to inquire at.
2009 – interferon
2010 – 2011 Mage A3 vaccine trial
2012 summer – Ipilumumab (didn’t work and melanoma advanced fast)
2012 -present – I was really advanced (tumors everywhere) and then BRAF (Zelboraf) worked fast and have been working very well.
I had a tumor removed from my butt/lower back in December 13 but outside of that I appeared to be in check, or managed with BRAF drug.
I will be at MD Anderson next week and should know the TIL harvest from the last tumor. If it works they will freeze my TILs for an option down the road, if needed.
However, this week I just noticed a few more sub dermal nodules (very small and probably won’t show up on scan). One on shoulder, three in right pectoral, and I think maybe one on my scalp.
I’m assuming after these recent nodules showing up, that something will change with my treatment. I have been on BRAF (Zelboraf) the last 13 months.
Again, I’m just curious what trials are available at this point, what exclusions because of other treatments I have tried. I’d like PD1 (I think) but they are hard to get in. I’m pretty well known by doctors at Univ if Chicago and MDA.
Any thoughts or questions I should be asking the next week or two?
Shane O’DonoghueJanuary 26, 2014 at 4:26 am #63417Celeste MorrisParticipant
If the superficial nodules are in fact melanoma, their subq location may make you a good candidate for a PV-10 trial. I am sorry that I do not know their exclusions nor all the locations they are taking place. I know Moffitt in Tampa is running one, but I’m not sure where else. (I’ve written about these studies a couple of times on my blog.) I am also not sure about this either, but it seems that you might be a candidate for the Dabrafenib/Trametinib combo. And, yes, of course anti-PD1, or some combo of it, would seem an option as well. Sorry you are having to face another fork in the road after all you have been through. I would speak to my docs about these possibilities as well as perhaps an anti-PDL1 trial. It seems that you are in very capable hands with your docs, and perhaps others on the forum may have additional ideas.
Wishing you my best. CelesteJanuary 27, 2014 at 12:54 pm #63418Catherine PooleKeymaster
So sorry to hear of all you have been through! Right now the feeling among experts is if your response to Zelboraf is subsiding, get on the BRAF/MEK combo. You might be able to get into the PDL/Braf/Mek trial and Tim Kuzel at Northwestern in Chicago is supposed to be recruiting for that trial. His number is: 312-695-6180. I think this is a fascinating trial with much promise. Keep in touch when you can. PS The PV10 hasn’t really panned out as hoped for subcutaneous mets according to our scientific board. The PD1 trials are pretty well closed except for a few for IPI naive.January 31, 2014 at 5:17 pm #63419odonoghue80Participant
Thanks for the replies and your suggestions. After having a brain MRI and a chest/abdomen/pelvis CT scan this week at MD Anderson, my results showed that there was a few new tumors scattered throughout my body. And there was a bit of some instability in the brain (probably some necrosis again but I want to hear from the neuro side if things first). The tumors aren’t in main organs but enough to change the treatment. MDA looked into what options they could give me, and myself and my family have checked a lot of research this week, it seems that I’ll be going for BRAF/MEK combo.
A few questions I have and some thoughts about sequence of treatments:
Since I’m pretty much out of most clinical trials now because I’ve had too many types of therapy (interferon, MageA3 vaccine, Ipi, Zelboraf), should I change the type of sequence of treatments?
While I’m still strong and feeling well (I’m 33 years old), why would I not try a treatment such as IL-2 or Biochemo? I understand the chance of responding to these “old” treatments rarely work, but when they do, they could be curative? I understand the toxicity of these treatments are intense, but you go through them, then you move on (no daily meds, daily pills) and try to rebuild again?
Then if they don’t respond, then you could take BRAF/MEK combo?
Just curious and interesting thoughts about that sequence?
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