- August 2, 2022 at 10:56 am
Just received results of TIL trial I did a month ago. It was a brutal treatment.
There is no improvement. Nothing new have grown. Existing lesions have grown. Damn it!
Why my body is so stubborn to respond? I can not believe it.
3 weeks in a hospital. Lots of traveling, hotels. Airline tickets.
Did Keytruda, targeted, Optivo/Yervoy, Obdualag, TIL. Nothing is stopping this beast!
What’s wrong with me?
I maybe have one more trial left in me. Any suggestions?
Disappointed to hear that opdualag didn’t work. Did it show any results, or a complete flop? I was hoping that that might be another strong weapon. Doubly disappointing to hear the negative TIL results. I hope you’ll look for another trial, if there’s one that’s at all promising, which it seems like there usually is.
- August 3, 2022 at 1:31 pm
Thanks for your replay. Nice to see you still around. How’s your health has been?
- August 3, 2022 at 2:19 pm
After I got Ipi/Nivo I think I stopped growing new lesions but the ones I had kept growing. The same for Opdualag or TIL. Nothing new popped up but the existing ones kept growing.
The TIL one was particularly disappointing because it was a brutal treatment with horrible rigers,chills, heart rate up to 160, temp up to 103. I was covered with 10 warm blankets and was still shaking uncomfortably. It was a tough treatment. I had to have 2 extractions surgeries for the sample. First sample looked good but fell apart and was not usable. Not talking about flying after surgeries back and forth, financial part.
I was just positive it would work. I read CAT results yesterday and I could not believe it.
Very disappointed to say at least.
Not sure what to do now. Doctor mentioned Doing Braftovi/Mektovi and either Ipi or Nivo.
I think I will try that. Not sure if it works?!
So any ideas suggestions would be appreciated. I m still in more less reasonable health to do go through little bit more.
So disappointing such a heavy duty treatments and nothing worked.
Yep, I’m still around. Currently doing TAF/MEK with Keytruda, which is keeping the tumor on my esophagus at bay for now, but everyone says that it’s only temporary, so waiting for the next shoe to drop. In the meantime, doing OK. Neuropathy in feet and left hand is biggest current issue, because I can’t do much walking before my feet start to throb, which severely limits your activities. To think I used to run 5 or 6 days per week. Oh well. We’ll see what comes next.
- August 4, 2022 at 10:08 am
Gopher38, it is nice to see you around. Yes, all this treatment leaves permanent marks with neuropathies, pain, skin changes.
- August 4, 2022 at 10:47 pm
Just put one foot in front of the other, literally! Lol. Not sure what you are talking for pains and discomfort but my morphine and hydromorhone help me a lot to get through my day. After this last treatment I noticed pain in my feet. I have to brace myself in the morning to get on those feet and start walking.
Its great that targeted therapy and Keytruda works even for now. It’s hard to live knowing it’s only a temporary solution and gate can get get flooded any time. It’s still living better then alternative.
I think I will do Braftovi/Mektovi plus Optivo for a bit at least to catch a breather. The TIL got me pretty hard and with two surgeries and 3 weeks hospitalization, flights back and forth 3-4 times a month. I haven’t been living.
The doctor mentioned today that he has a hope for pseudo progression since my liquid tumor DNA results went down despite CAT scan results. This doctor doesn’t throw positive hopes around easy. He is very cautious usually. It was in expected and sounded little hopeful. Will see what is the trend for this Signatera tumor DNA test. I expect more results in a week.
Still looking around for a cool trial maybe close to home?! It would be easier….
Thank you Cindy for replying. Not sure about being a Pioneer. TIL has been around a long time. I m glad Keytruda worked for you. You are an example of a patient who’s immune system was kicked in a gear right away. You need to be in a research articles or something to see what kind of cool compliant genes you have. Stay around. Thinking positive is a half of the battle!
- August 4, 2022 at 10:56 pm
JudyAU, thank you for you replying.
- August 4, 2022 at 11:06 pm
If I remember correctly you have been through a lot too, girl?!
What is the current treatment keeping nasty Mel at bay?
Yes, I can’t believe if I progression is the only response from this last two months hard work. It’s pretty unfair then. Hey, life can be unfair I suppose. I used to be a girl who doesn’t get into too much trouble. Not sure what happened here. Lol. On a bright side I m still around. It used to pretty fast demise for this disease. It’s been 2.5 years for me. Hoping for little bit longer….
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