- November 2, 2019 at 12:21 am
I have news! The hilar thing is benign funk. No Mel, no Larry! But in the process of doing all the CT scans for the Hilar thing, we found a new lesion on my spine (T10). So I’ve been at the hospital all day today doing the prep work for radiation. Yes, we’ll zap this sucker 5 times. and it will be done with. I figure this is a good trade-off — treating the hilar thing would have been messy. Now we’ll just keep watching it.
On another note, I’m getting more and more tumors popping up on my arm. Some are good sized (bigger than a grape) but most are small (pea-sized) but I”ve just about lost count of them. RS Doc says we have come to the end of chasing them with surgery. There are just too many. So we need a Mel plan that won’t interfere with the Larry plan. We were talking Pembro or maybe the combo treatment. I was a partial responder when I first had ippi and pembro and I know that there’s evidence that rechallenging Mel with Ippi and/or Pembro isn’t a bad thing. We’re just not sure what it’s going to do to the Larry gameplan. Ippi and Pembro and a TKI Chemo? I’m also Braf + and maybe that will do the trick, but no matter what I have a feeling I”m going to be my own clinical study (N=1). We’ll have to give it a cool name. So I’ve really digressed.
So this is where it’s at. It’s always good to see how my MPIP Peeps are doing!
Wishing you peace, SHalom!
Julie in SoCal
- November 2, 2019 at 12:39 am
Dumb question, but regarding the arm tumors, isn’t that the type of situation where interlesionals are a strong option? Asking mostly to improve my understanding of the topic. Anyway, good news about the hilar thing. I think benign is my new favorite word. I hope none of this interferes with the camping plans.
- November 2, 2019 at 1:18 am
Not a dumb question at all! Yes, intralesionals are a strong option for the arm funk. I’ve done T-VEC in the past and got really, really, really, bad side effects (herpes all up my arm). But my Rock Star doc and I have talked a little about PV-10 for the bigger tumors. So this is a strong possibility.
Thanks for the reminder!
- November 2, 2019 at 3:39 am
The hilar thing is good news – sorry about the spine but it seems that one you can get rid of more easily, so seems like a good trade.
I am not braf positive but if you are then why not use that treatment taf mek etc? Couldnt you have done this before too? Tends to be quicker acting i believe?
On intralesionals, you know i am a fan – it seems to have worked for me but it turned out it did not work out for others in my hospital i think because their tumour burden much higher. So check if yours are still manageable with intralesional ( in my case combined w pembro, the tvec got the pembro finally to work, for you maybe pv10 or you just got unlucky with the tvec sample you used before?)
Celeste and others are much more expert but i would think about using a braf targeted therapy to bring things under control and then back on to ipi nivo or maybe intralesional plus pembro or nivo
Am glad you had some good news and once the radiation done hope you and rock star can get the plan going very soon
Best wishes mark
BubblesParticipantOh, Julie!! So happy that the hilar junk is “just” funk!!! So sorry that you are dealing with more cutaneous lesions and the lesion on your spine. You are most certainly your own study ~ deserving of a cool name indeed!! You may have talked with Rock Star already…..but is isolated limb perfusion anything that might be helpful? It wouldn’t have too many systemic effects (theoretically). Anyhow, hang in there with the radiation and do keep us posted. Holding you in my heart my friend!! Much love, les
- November 2, 2019 at 12:24 pm
- November 6, 2019 at 2:33 am
DoubleTT…Tracey from Toronto Canada. I just finished Adjuvant Nivo on is own 2 weeks ago. Took it every 14 days for a year. I received it 4 weeks after my docs at (Princess Margaret Cancer Centre) blew up a met I had to my T12. Sounds the same as yours. They called it stereostatic radiation surgery. They gave me 2 massive doses. Not 5. I am NRAS so its aggressive. Be prepared friend and ask up front for the pain killers!!! Dont agree to Lyrica. You’ll want it but other peeps I talked to told me to work thru the pain with a good pain killer instead. You do get damaged nerves…so some docs get you on Lyrica but it has tons of side effects. So I opted for something else, ate very very light meals and small ones as much as I could . That T10 and 12 area is the same spot as where our tummies are located. So it needs tender care during the sessions. I was told the Nivo right after the radiation settled down would be adjuvant, as there is awesome evidence Nivo goes to work even stronger throughout the body once you get zapped (sorry). The radiation speeds up Nivo’s operation. So maybe your docs can pick the right combos plus Nivo right after your zapping sessions are done and you feel strong to start. The new results showing up in research are phenomenal!! You’ve got this. PS. get the anti nauseant meds going a good two to 3 hours before your sessions. The tummy gets grumpy! My poor driver (mom) had to pull over many times on the way home …lol we try to see the humour in the crap we deal with while being grateful. Tracey
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