Yes! Stage 4 to NERD in 3 months. 9 months out and still holding at NERD.
Mskcc in NYC is where I did my t-cell trial. I'm sorry you weren't a candidate. I was really expecting not to be as well.
Unfortunately I don't know what all is going on in your country with this sort of treatment. Here it it FDA approved for use in lymphoma and leukemia. Anything else I believe is just in clinical trials. I'm attaching a link to my clinical trial at the bottom of my comment so you at least have that info to share with your doctors. There are genetic factors you need to have to qualify, as well as specific cancer staging requirements.
But I hope this at least gives you a direction to go with! Best of luck to you, truly. If you have any questions or just need an ear to talk into about this, please feel free to message me.
I hope it goes easy on you! For me: the chemo wasn't too rough actually. I was admitted so on fluids and had anti nausea meds and anything else I needed pretty much at the drop of a hat.
The cells being put in was nothing. Like saline. Easy!
I thankfully slipped any cytokine storm or anything severe after that as well. I had some weird pains in my side and jaw for a day and a half, a SUPER bad headache for 2 days, and a very mild fever (not even classified as one, it was just raised temp by a couple degrees) for 3 or so days. That was it! I did have to get a bunch of neulasta shots, I think twice a day for about a week, if you haven't had them before and they give them to you all for an antihistamine the second you start to feel discomfort in your bones from it! I stayed in the hospital a total of just under 2 weeks. 4 days of chemo, a day off, then the t-cell fusion, then a week of observation. Over all a pretty easy process. I was mentally prepared for it to be REALLY BAD just in case so I was pretty pleased with the experience.
Any other questions please don't hesitate to ask!
I hope you get through this without any drama or significant side effects! :)
This makes me so happy to hear! Was his treatment a clinical trial or is it approved/covered by insurance?
Hey! Stage 4 Synovial Sarcoma here, well... Formerly. I did the t-cell therapy in July and my tumors are gone! Go to my profile to find my posts about it, if you want.
I didn't read all the comments (literally just woke up haha), what kind of Sarcoma do you have? Where in the treatment process are you now?
Thank you so much!
No one's faking cancer on this end, I dunno what you're talking about.
I didn't post that there, but they did link to my post. I hadn't seen that until you just shared it. Kinda bizarre how far this random post I made went!
There was one! I think it got buried though.
Well, I'm 6 months out from treatment... By 3 months I had NO evidence of cancer. I had my 6 month scan last week and it's still clear!
So like... Hell yes it did.
Just had my 6 month scan last week... STILL CLEAR!
Same here. I wonder why they don't bother me?
Or this one might be better.
Oh! Haha no, I was just really confused.
I pretty much had none of that. Temp of 99-100 (my base is usually about 98.2) for a few days, I had some weird body aches, especially on my left side and jaw, including a MASSIVELY bad headache for 3 days (migraine level pain but not the other migraine symptoms - JUST the pain)... That was it really. I had neuro testing twice a day for a week afterward, everything was fine. The CytoStorm passed right over me, pretty much.
I'll haunt it up
Thank you! <3
Thank you so, so much!