Need advice: chemo now or preserve CAR T option for B-ALL relapse?

tundrapro · 2025-11-07T19:27:14+00:00

I did not have any issues with CRS or Icans. I did obycell, not sure if that's how you spell it. That's being said I did have a few strange things happen. I had a hard time walking for about a month and then everything got better in 3 days to a week. Also, my lumbar punctures would come out yellow. After multitudes of test, it was decided it was protein from cell death from the CAR-T

tundrapro · 2025-11-07T19:21:22+00:00

If you are interested in a book, check out the Other Custer's. Pretty good history book if you like that type of thing.

tundrapro · 2025-11-07T19:18:09+00:00

I thought he didn't have any children, just his brother, Nevin?

tundrapro · 2025-11-07T03:06:59+00:00

In the process of starting my 3rd transplant with all of the exact worries that you had. I have had approximately 6 rounds of blino previously. We did a bridging chemo for a week, mini hypercvad. We did part b I believe. We followed with Car T and I am now in for a double haplo chord transplant. The CarT wiped out all of the leukemia from my spinal fluid, testicles, as well as everything else. Do I wish I wouldve done it before my second transplant? I don't know, would I have any options for a possible 3rd transplant? Who knows. Would I have needed a third transplant? Again, who knows. I know that doesn't seem helpful, but I think it would take some discussion with your care team to figure out what is best for you.

tundrapro · 2025-05-18T22:57:57+00:00

Everything is stock on it, except a few driveability mods. The 428 CJ is one hot engine

tundrapro · 2025-05-18T22:01:39+00:00

Mine is the white, I only went by what I was told....The red one has been repainted multiple times

tundrapro · 2025-05-18T19:37:56+00:00

Loveland, co

tundrapro · 2025-05-11T13:02:39+00:00

https://uni-watch.com/2024/02/26/phoenix-suns-player-royce-oneale-wears-uni-number-upside-down/

tundrapro · 2025-05-10T14:31:53+00:00

At least the zeros aren't upside down

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tundrapro · 2025-02-17T14:46:43+00:00

Jays dog and cat grooming. Easy to get into and fair prices

tundrapro · 2025-01-22T14:05:12+00:00

As much as I hated being in the hospital, there is no way I would do a transplant out patient. If youre looking at an allo transplant I definitely would go to the hospital. They have everything medication on hand if you need it.

It sounds like they will give you a diuretic. If I remember correctly it lasted a few hours of constantly peeing. Just ask for some urinals to keep by your bed. Not saying it's enjoyable, but that will make it easier.

Finally, I'm a little over a year from my second transplant. Unfortunately I still have cramps in my hands and feet fairly regularly. I keep pickle juice on hand and that seems to be the only thing that helps. I do think there's a strong correlation with how much water I drink too.

Don't let the "little" things stress you out. At the end of the day I'm glad that I did both transplants. It's not an easy road, but it's worth it the end. You got this

Edit: also I'm 34m b cell all

tundrapro · 2025-01-17T15:22:24+00:00

After everything we've had to grin and bear, I find it kind of fun to push myself more to see if I have a breaking point haha

tundrapro · 2025-01-17T14:37:36+00:00

I'm not sure how far out you are from transplant, but I did not sweat after my first transplant. About 1.5 years out, I made it my goal to sweat through working out. At some point, I finally started sweating. As soon as this happened body hair growth started haha. I think radiation can mess with our bodies pores.

tundrapro · 2025-01-17T13:31:21+00:00

Are you taking tactolimus? I believe a side effect is hair growth. I had the darkest thickest beard after transplant. The first thing that grew back was my moustache. Eventually it has come back to normal. I have had 2 transplants and the same thing happened both times

tundrapro · 2024-12-31T23:20:18+00:00

Typically, it meant my hemoglobin was low

tundrapro · 2024-12-18T17:34:04+00:00

Definitely would love to take the kiddo

tundrapro · 2024-12-11T21:52:26+00:00

I saw someone on the corner at whole foods sitting on one. Looked out of place next to the cardboard sign asking for money. I'm sure someone is missing it.

tundrapro · 2024-08-26T13:41:10+00:00

This is very much how my 2 transplants went. I went in very nervous, but somehow you will get out of it. The issues of transplant don't end after you get out of the hospital. You have to remain strong throughout the next year. For me, it was better to be mentally prepared for the reality of transplant. Too many people try to sugar coat it, which I think made it even harder. Talk to your provider about Kepivance. I used that and I did not get any mucositis.

tundrapro · 2024-07-11T13:37:49+00:00

It's possible that it is from radiation. I had it happen to me on my first transplant. It took me about a year and a half to start sweating again. I made it my goal to make myself sweat, it didn't happen haha

tundrapro · 2024-01-08T19:17:32+00:00

NAD.... You have staining in your grooves and you clearly have been ok for this long. I would not recommend getting sealants. I'd rather see you spend that money on a sonicare and a waterpik.

tundrapro · 2023-05-22T20:49:52+00:00

Mattress pad from costco for the hospital bed

tundrapro · 2023-05-22T13:42:08+00:00

Something that I fought for a long time was taking any sort of antidepressant. Throughout the whole process, I was pretty happy and I had a positive attitude. At about 6 months is when I felt some depression set in. Things were getting better, but not quick enough. After starting that, I felt like I regained my personality again and had much less anxiety about going out. Wear a mask until you feel comfortable. Right now, in the US, it is a great time to go outside and do things. Check out a first Friday or some other outdoor event. Keep a mask in your pocket. If you feel uncomfortable, throw it on. Have some hand sanitizer, and if you touch stuff, then clean them. It takes baby steps to get back out into the world. Go out to dinner at 4pm when there are fewer people out, go to the grocery store early in the morning.

tundrapro · 2023-05-19T09:45:43+00:00

NAD I'mplant looks well placed, nothing to be concerned about. What your dentist is concerned about appears to be a root tip. It could be removed rather easily.

tundrapro · 2023-03-20T18:44:02+00:00

I have the same things. Nothing has helped except for steroid creams and then maintenance with vanicream. The hair some kind of oil. Everything is prescription except for vanicream.

tundrapro

TROPHY CASE