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December 5, 2012 at 9:20 pm #20825patiParticipant
Sorry to bring bad news to the forum about anti-PD1 but I had early scans today because my axilla tumors and LDH were just going up and up since the beginning, and CT scan today confirms that they have grown since I started the MERCK anti-PD1, I kind of knew and had not posted because one hates to bring bad news here.
But all in all my CT scan was not a whole catastrophe; seems all the “organs” are all still fine and whatever tumors were seen on the entry scan on my lungs and or liver are not visible so, small old tumors in same old sites are there a few mm bigger, a couple new nodes in left arm but hey I was ready for a X-mas tree so I almost felt some sort of relief.
So I have been planning many things, yes sometimes dark thoughts like what sort of funeral I want and making sure my will is done, passing on M-ICAB to good hands, letting my students know, etc, but among the medical thoughts I am thinking to re-induce with combination BRAF and MEK and unfortunately this will not be accessible through GSK nor ROCHE on CU so I am trying to enter the Novartis BRAF/MEK trial which is now open in Barcelona. I heard from them today so this might become my ONLY real option to get a few extra months here and there. Let’s be honest I feel my tree branches are getting shorter and shorter, so part of me is preparing yet part keeps on hoping like we all do. I will not go for TIL, and do not want to do chemo again. Might try some cool chinese tea but will not post about that here!
Just wanted to say like you all, it is hard to be doing this balancing act of accepting mortality and hoping for a miracle around X-mas when my kids are for the first time seeing visible signs of progression (the tumors, the fatigue, etc) and I feel they have really to GROW up fast so that I can catch as much as I can…
Keep you all posted.
PatiDecember 6, 2012 at 2:43 am #57896wim1Participant
What a terrible news, it is a hard road going to the end of all possibilities. Especially for someone with such a dedication like you.
I wish you and your family all the strenght you need.
WimDecember 6, 2012 at 2:55 am #57897Celeste MorrisParticipant
I am so sorry to hear that news.
Here’s a thought: HSP90 inhibitor (XL88) is a drug (also referred to as heat shock protein inhibitor) that may help overcome BRAF inhibitor resistance. There is a phase 1 study with this drug at Moffitt in Tampa, Florida. Clinical results are hard to find for obvious reasons, but several articles state that it might well help “overcome resistance”.
I have no idea if it is available in Europe or where other trials utilizing this drug are located in the US. Perhaps Catherine could help with that and my husband it still searching. However, just now, looking at the NCI trial listings it seems to disallow those who have already had a BRAF inhibitor…so I don’t know if you could get in this after all. And…it does seem that Moffitt is the only local. Will keep searching.
I do have one more, perhaps better, idea. Check my blog post re: Rose Bengal (October 12, 2012…Chaotically precise..). It seems trials are going on in Australia, Houston, Bethlehem, PA, and Louisville, KY. It is an old drug that shows promise when injected directly into cutaneous and subcutaneous tumors. Even better, neighboring tumors often shrink as well. Results posted in Ecancer news Oct 8, 2012:
Objective response was achieved in 51% of target lesions (25% complete response and 26% partial response). Furthermore, disease control (combined complete, partial, and stable responses) was achieved in 69% of lesions. In bystander lesions: 33% = objective response and 50% achieved disease control in these lesions. It also appears that the drug is available for compassionate use in places listed above. A contact for the compassionate use program is listed as: Pete Culpepper at: firstname.lastname@example.orgFeel free to contact me for a paper I have if you would like it.
I can only imagine how tired you must be. Fighting seems very difficult some days. Let me know if I can be of any help.
Yours, CelesteDecember 6, 2012 at 9:58 am #57898GillyParticipant
I am so sorry things are not working out – I hope you can get the Spanish trial and that it gives you the extra time . We are not used to hear you so down because you are always so positive on here – however, I think it is totally normal that you be morbid from time to time especially if it helps you sort things out with your kids/funeral etc – there is nothing to prepare any of us for these things and we have to deal with it as best we can – HOWEVER you deal with things is the RIGHT way if its done with love and thought. Life is shit sometimes but we are not owed a good deal, however much we hope for it or merit it – your kids will want now and appreciate later, what ever you can give whether its fighting for treatment or not – you are an inspiration to us and will always be to your loved ones – be kind to yourselves and ALL the best in whatever you choose xxxxDecember 7, 2012 at 6:43 pm #57899bettinParticipant
you are in my thoughts.
BettinaDecember 8, 2012 at 4:05 pm #57900DadZGirlParticipant
Thanks so much for sharing so much of yourself here and all the work you do for the rest of us. Your video was incredibly touching and real and I so much appreciate your honesty. Sorry to hear of your news. I am thinking of you and your family.
LauraDecember 8, 2012 at 7:53 pm #57901HeinParticipant
Thinking of you….
HeinDecember 9, 2012 at 2:25 pm #57902Shirley ZParticipant
YOU ARE LOVED! We are so grateful for the knowledge you have given us. Even though the distance between us is great, I feel like I know you. Thank you for allowing us to be part of your life. You will never be forgotten.
Love and thanks,
Shirley ZDecember 9, 2012 at 3:46 pm #57903AnonymousGuest
Actually, Patti, reading your post, it seems like you had a “mixed” response with tumors previously seem on the lungs and liver gone. If I read that correctly, that would seem to be good news. That may also explain the elevated LDH. Shoot my LDH can go up considerably for sometime after a work out because the abuse I put it through is repairing itself, so maybe you body is having a “work-out” from the anti-PD1. Ask the Onc.
There’s always hope.
I’m glad you’re enjoying Christmas!
With prayers for you Patti, and everybody else here:
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