[dianaiad]

Re: Diana's CAR T-cell therapy journey

by dianaiad on Tue Mar 03, 2020 11:28 am

Thanks, everybody, for the very good wishes.

Today was supposed to be admission day, but it's not. The doctor wants to wait for the results of yesterday's bone marrow biopsy and blood tests before he puts me 'inside.'

On the one hand, I think I'm grateful; yesterday was a lot to handle, what with the bilateral bone marrow biopsy and the four hour commute (not that I felt the biopsy; oh, getting 'put out' for that is lovely), but I appreciate the extra day's rest and 'get my stuff together' time. Not to mention the manicure.

On the other hand, I thought it was a done deal, and now something might go wrong and I could, perhaps, get washed out of the program?

Eek.

I guess I'm just confused at the moment.

[dianaiad]

Re: Diana's CAR T-cell therapy journey

by dianaiad on Thu Mar 05, 2020 6:38 pm

Update:

Well, it looks as if the bridge therapy worked way too well. My light chain numbers are far too low, and my numbers for the bone marrow biopsy are waaaay too low, for them to measure CAR T-cell therapy efficacy.

So I'm not going in the hospital today, or tomorrow, or who knows? The doctors want me to have blood tests every Monday and Thursday, and when my light chains go up to 10, then I'm to talk to them.

I'm scheduled for another round of the bridge therapy tomorrow, but can't figure out whether I should show up for it or not.

So what I am, right now, is utterly confused. On the one hand, the bridge therapy worked, and the disease is knocked right back. On the other hand, we all know that it won't stay there; my light chains will go up, and until they do, I can't do the CAR T-cell thing. So am I supposed to be dancing in glee or wanting to hit something?

Arrgghhh.

[dianaiad]

Re: Diana's CAR T-cell therapy journey

by dianaiad on Fri Mar 06, 2020 1:09 am

Update:

Well, my oncologist says to hold the bridge therapy that had been planned for tomorrow, but do take the blood tests on Mondays and Thursdays.

I guess she is going to catch up with my myeloma specialist and together they will figure out where to go from here.

I'm just tired. Ah, well, isn't this journey exciting and fun?

[Nancy Shamanna]

Re: Diana's CAR T-cell therapy journey

by Nancy Shamanna on Fri Mar 06, 2020 9:35 pm

Thanks for the update, Diana! It is a situation of uncertainty, and I hope that everything works out well for you too. Take good care of yourself! Best wishes, Nancy

[Annamaria]

Re: Diana's CAR T-cell therapy journey

by Annamaria on Sat Mar 07, 2020 11:02 am

You are going through so much, Diana. I have read every line of your reports. Please keep your courage and determination. My thoughts are with you.

[Mike F]

Re: Diana's CAR T-cell therapy journey

by Mike F on Mon Mar 09, 2020 11:57 am

Good Lord! Normally, there's no such thing as a therapy that works too well. On the other hand. once you're completely psychologically prepared for something like CAR T-cell treatment, it would be very tough to have it yanked out from under you like this. Even temporarily.

I really feel for you, Diana. I'm at least happy knowing that you'll be going on to fight another day.

[dianaiad]

Re: Diana's CAR T-cell therapy journey

by dianaiad on Tue Mar 10, 2020 10:10 am

Well, Mike, there you go, and you have closely identified the problem for me. It's psychological. Do I rejoice that the bridge therapy worked so well, or do I throw a tantrum because it worked so well I may have been ejected from the CAR T-cell therapy trial? You know, the one where so far only two patients have been signed up, the first one died, and I was #2?

Sometimes I have to wonder if I have all my brain cells. (grin) Still, It would have been nice to be at the forefront of this particular fight, and you never know; I still may be. I'll let y'all know what happens, when something actually happens.

[borber]

Re: Diana's CAR T-cell therapy journey

by borber on Wed Mar 11, 2020 9:57 am

Diana,

I have read all of your posts and picked up lots of helpful information. Thank you!

Yes, unfortunately every good response for all of us and for any therapy is just temporarily. But my feeling is that if something works it gives us some additional time and we have to continue using it!

I think it’s unlikely you would be kicked out of the trial because of this response to the bridge therapy. Especially having in mined that they have collected your T-cells and have them engineered already. You might become #3 instead of #2 while the bridge therapy’s working.

This is just my opinion, maybe I’m wrong, but I just wanted to provide it to your attention.

My warm wishes and thoughts are with you!

[dianaiad]

Re: Diana's CAR T-cell therapy journey

by dianaiad on Thu Mar 19, 2020 6:03 pm

Update:

My light chains are going up, but not 'fast enough,' evidently. So yesterday they did a biopsy of the lesion on the back of my head.

To figure out how big that is, take your fingers and cup them over the top of you computer mouse, so that they cover the mouse but are about a 1/4 inch (6 millimeters) from the table. That's about the size and shape of this thing. So they took me into the ultrasound room, figured out where to get the samples, gave me some lidocaine and took the samples. Given my experiences with bone marrow biopsies, I was afraid of this. But I kept repeating to myself "Courage is not defined as doing some­thing without fear. Courage is defined by doing what needs to be done in spite of being scared to death!"

I felt like the bravest person in the world just then, and, pfft, what a let down. Hardly felt a thing, except for one poke. And the doc apologized up one side and down the other for that one, and it was no worse than what the lesion was doing to me all by itself. Now I feel silly.

Anyway, the doctors will let me know what's what as a result. They are going to have to do some fancy dancing around COVID-19, evidently, but (shrug) your guess is as good as mine at this point.

[dianaiad]

Re: Diana's CAR T-cell therapy journey

by dianaiad on Sat Mar 21, 2020 8:27 am

Update:

I just got an e-mail from my doctor telling me that they found multiple myeloma cells in the biopsy, they have discussed my case at the cancer center, and that they would proceed with the CAR T-cell trial next week. I'm to have the labs done on Monday and they'll get back to me.

I was warned to stay well away from sick people, since COVID-19 could be a problem for me before, and during, the trial.

Yeah, I suppose it could, at that.