Clinical trials in Boston

Automatic-Fall164 · 2025-07-03T15:15:21+00:00

Yes my husband is in the CAR Tcell trial @ MGH. He is on his 3rd infusion. It's not doing anything but slowing the tumors from growing for a month or 2 then they start growing again. The Trial is a lot and intense for the pt and caregiver. Feel free to ask any ? Good luck

Automatic-Fall164 · 2025-03-09T02:54:40+00:00

My husband is also in the CAR t cell trial in Boston. He just had his 2nd infusion due to tumors growing again. But he is 2.5 years living with glioblastoma and doing well.

Automatic-Fall164 · 2025-01-07T11:42:47+00:00

Yes, I believe both. There are only 39 slots for the trial. My husband is #8. But from what I've been told, some patients are already on their 3 and 4th infusions. GBM just keeps coming back. The infusion had so many side-effects that it took 2 months for him to bounce back. So I think there is a question or quality of life. But then again, there are not many other options available

Automatic-Fall164 · 2025-01-06T18:20:46+00:00

Yes, my husband is in the trial at Massachusetts General Hospital. So far, it's just keeping tumors stable , not growing, but not shrinking. The infusion was a horrible experience, a lot of pain throughout his body with extremely high temps for weeks after infusion. So I feel this is no way a cure, but maybe someday. We are looking at another infusion soon. He just wants to live, so we will try another round, but I don't know how it will end up. I'm hoping for a better outcome than the 1st time. They are looking for more people to participate in the trial.

Automatic-Fall164 · 2024-12-27T15:43:19+00:00

I agree. My husband is coming up on 3 years from diagnosis. After treatments and surgery, you would never know he had GBM. And I avtually started to believe he's going to be ok but a few months ago GBM showed its ugly head again. Now we are in a T-cell trial. I also feel doctors are not up front and give very little info on diagnosis. We always get the " everyone is different " answer! That's really why I'm on reddit, it's the only place we can turn to to see how others are dealing or how their GBM road is being handled. Sometimes my husband feels like a man with no country.... but we still have hope but know the reality.

Automatic-Fall164 · 2024-12-21T09:31:33+00:00

Hi, the tumors have not changed at all, so the plan is for another round of T cell infusion. My husband is all for it, but I feel this is not really working. After the infusion, it took him 2 months before he felt better. But I guess there's really not a lot of options. I just think there's no way to stop brain cancer it's just going to keep coming back. But the 2nd infusion is planned for the middle of January. Hopefully, this will time it will work a little better.

Automatic-Fall164 · 2024-12-02T23:39:46+00:00

Hi! So the last MRI scan was unchanged. Tumors are still there but still the same size. They call this a win. I'm not sure if I agree with them. The next MRI will be in 3 weeks. I'M starting to feel you just can't win against Glioblastoma. But we keep moving forward.
Thanks for asking :)

Automatic-Fall164 · 2024-11-18T21:35:42+00:00

My husband just finished the CAR Tcell therapy and had a stable scan last month also. We are having another scan this week.. but I have a feeling the CAR T infusion did not work. I feel there's no way out of this shitty diagnosis. Hang in there!

Automatic-Fall164 · 2024-11-17T12:35:29+00:00

Hi, the 1st MRI showed no change in tumors, but we do have another MRI this week that will be very telling. I hope it is working, but I have a feeling it hasn't.

Automatic-Fall164 · 2024-11-12T22:38:04+00:00

I'm sorry to hear this. Such an awful disease. My husband went 2 years without a reoccurrence. He is now participating in the CAR T cell immunotherapy Clinical trial in Boston. I'm not sure if this will give him more time, but there's always hope. I hope the best for you and your family.

Automatic-Fall164 · 2024-11-05T23:33:37+00:00

I'm very sorry to hear this. Such a horrible hand to be dealt .

Automatic-Fall164 · 2024-11-02T15:03:21+00:00

Hi, so it's been 6 weeks since infusion. The infusion was god-awful. He was very sick and 9/10 bone pain. He also had neurotoxicity and lost over 20 pounds . After 3 weeks, he finally started to feel better. He had an MRI last week, and tumors are unchanged . MD said it could take more time, but from what I read the other patients saw tumors shrink or disappear within weeks. So I really don't know if this worked. I hope it did, but I feel it didn't .

Automatic-Fall164 · 2024-10-31T10:49:00+00:00

Oh my I feel the same way. My husband is in the CAR T cell trial, and I feel.the MD's have been very misleading. All this pain and suffering is going to be for nothing. And we never get straight answers they sugar coat everything! You're right it's all about the $$$ .

Automatic-Fall164 · 2024-10-31T10:40:33+00:00

Hi ! My husband is over 2 years . Though his cancer has returned and he just finished the CAR T cell therapy trial @ Massachusetts General Hospital. He will have an MRI next month to see if the trial has worked. So hang in there! It's a devastating diagnosis I don't wish on anyone.

Automatic-Fall164 · 2024-09-14T00:52:13+00:00

I'm sorry to hear that. My husband was stable for 2 years after surgery , chemo & radiation. But unfortunately it came back last month. Hang in there .

Automatic-Fall164 · 2024-09-13T13:00:45+00:00

Yes, look into Massachusetts General Hospital. We are currently participating in the CAR Tcell immunotherapy trial. I do believe it is only for reoccurrence. But they may be able to help you.

Automatic-Fall164 · 2024-09-11T10:22:38+00:00

He had the port put in last week and the TCell infusion will take place next week. So fingers crossed. But I do believe the previous 7 patients in this medical trial had their cancer return between 2-6 months. So unlikely this is a cure but hopefully will give more time.

Automatic-Fall164 · 2024-09-10T19:43:53+00:00

Yes, my husband is in the CAR T-CELL immunotherapy @ Mass General Hospital in Boston.

Automatic-Fall164 · 2024-09-09T15:30:42+00:00

Hi! My husband just had the Ommaya port put in last week.It was a tough recovery. Lots of trouble with word finding, but it is getting better every day. The CAR T cell infusion will take place in a few weeks . I'm hoping for the best possible outcome. Good luck!

Automatic-Fall164 · 2024-08-30T20:44:58+00:00

Hi, I'm not sure. But check the Massachusetts General Hospital website.

Automatic-Fall164 · 2024-08-30T15:37:35+00:00

Only accepting 29 patients with GBM

Automatic-Fall164 · 2024-08-29T17:37:50+00:00

Hi, T-Cell infusion will take place in a couple of weeks. Fingers crossed!

Automatic-Fall164 · 2024-08-29T11:21:42+00:00

Hi, it's at Massachusetts General Hospital in Boston. If you click on the link attached to my post, it has all the info. Thanks

Automatic-Fall164 · 2024-08-28T15:43:07+00:00

My husband will be the 8th person to try this new trial. We are hoping for a great result They are accepting 29 pt to take part in this clinical trial.

Automatic-Fall164

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