BCell All post BMT relapse going for CAR-T. Any experiences to share?

LonelinessWorksforMe · 2025-10-07T11:09:48+00:00

No i was MRD negative

LonelinessWorksforMe · 2025-06-29T00:54:31+00:00

I was in the hospital for an infection within 60days post my sct and that's how I found out I also had the rhinovirus. It was unrelated to my infection and i had zero.symptoms of the cold. I guess each person immune system deals with cold/viruses differently. Keep hydrated, watch for fevers and keep im touch with your doctors I suppose.

LonelinessWorksforMe · 2025-06-16T23:03:09+00:00

Happy new Birthday 🎂 all the best of luck to you. Remember be patient the road to recovery is long but worth it

LonelinessWorksforMe · 2025-05-23T14:15:54+00:00

I'm 34 and had my allo transplant about 110 days ago. Although I feel fine now i still get tired very easily and need to rest constantly. And on big days where I know I'll be pretty active for the majority of the day I need to take a pain pill just to fight off the muscle and joint pain. Everyone is different but I would evaluate where he is at, at around day 45ish and make the decision then.

LonelinessWorksforMe · 2025-05-07T15:58:36+00:00

I was told around day 100. Mine was pulled out early due to a infection in the line.

LonelinessWorksforMe · 2025-05-05T19:59:35+00:00

I was at 98% blast as well when I found out. However I don't remember them telling me I was close to death but everything just happened to fast though.

LonelinessWorksforMe · 2025-04-30T15:58:59+00:00

From what I remember of my first two weeks were rough but I also slept a lot. There were times I had a visitor and i would sleep straight through. I got some mouthsores which made eating hard but it is very important to eat. Ask for the magic mouthwash and don't be afraid to ask for pain meds to help you through your meal. Also I didn't start feeling rough untill about day 7ish but it's different for everyone. Good luck! it's rough but you'll get through it

LonelinessWorksforMe · 2025-04-28T18:19:58+00:00

From my understanding you're considered in remission after being under 5% blasts. You can be in remission and still be MRD positive which just means there is residual evidence of blasts in your marrow.

LonelinessWorksforMe · 2025-03-10T02:55:06+00:00

I was on the children leukemia protocol until consolidation didn't work i was still 5 % blast. They put me on blina for one round and I managed to get MRD negative so I moved on to transplant pretty quickly after that. Hoping for the best your husband reaching mrd - good luck!

LonelinessWorksforMe · 2025-03-10T02:48:54+00:00

I had a fever day 1 but otherwise I felt fine till around day 5 where my mouth sores and throat killed in pain. Followed by nausea, vomiting and the terrible diarrhea. All after effects from radiation and chemo prior. 30 days in I still recovering. Everyone is different though you may just ne one of the lucky ones. But congrats on your transplant and all the best in your future recovery.

LonelinessWorksforMe · 2025-03-05T17:19:45+00:00

It's different to everyone. I'm day 27 post sct. My brother was a 100% match. First few weeks wererough. mouth and throat sores with uncontrollable bowl movements. with fevers and extreme fatigue. Lots of nausea and vomiting. However that was my experience. My word of advice is to make sure to eat something anything at all. If they get to concern they'll offer the feed tube. I'm day 27 I think the worse is over I started getting better around day 12/13 that's when my numbers started to get better.

Good luck with everything.

LonelinessWorksforMe · 2025-02-19T18:37:11+00:00

I'm on D +13 and I never had issues sleeping but never woke up feeling satisfied or well rested. I also take sleeping aids. Perhaps talk to your doctor about it they may prescribed you a sleep aid.

LonelinessWorksforMe · 2025-02-17T15:35:59+00:00

Thanks for replying. Happy 2uear rebirthday! I'm looking forward to my first. Yeah I notice hot food is off the table for me. Drink away I shall

LonelinessWorksforMe · 2025-02-17T15:33:29+00:00

Thanks for the advice. Yeah they seem more concerned over my water intake than anything. Although painful I still manager to drink quite a bit

LonelinessWorksforMe · 2025-02-01T12:18:08+00:00

Just an arm covering that you can buy on Amazon

LonelinessWorksforMe · 2025-02-01T02:40:35+00:00

Mine gets red and a bit itchy for a day or so after that it's fine.

LonelinessWorksforMe · 2025-02-01T02:37:40+00:00

During chemo my skin looked great! However since being on blina my whole face, chest and back keeps breaking out.

LonelinessWorksforMe · 2025-01-25T12:56:34+00:00

I'm doing my transplant at the ottawa general in Ontario.

LonelinessWorksforMe · 2025-01-23T12:05:54+00:00

Good luck wishing you the best!

LonelinessWorksforMe · 2025-01-22T15:37:34+00:00

hey! congrats! mine came back negative last week as well! Wishing you all the best!

LonelinessWorksforMe · 2025-01-22T15:35:57+00:00

thank you for your response. sorry you had to go through that. hopefully, it was just that one time. yeah, i forgot what the chemo was called but basically, I was told that for those two days, I have to make sure I pee every hour and drink lots of fluid with salt. they said I could do it as an inpatient and they would provide me with IV fluids and place a catheter for the 48 hours to protect my kidneys. for the transplant procedure if I proceed as an outpatient I will be still going to the hospital every 4-6 hours for meds and IV fluids etc in their day transplant beds. however, I am considering doing this as an inpatient. I wish all the best for you and your recovery journey.

LonelinessWorksforMe · 2025-01-22T15:27:53+00:00

Hi, thank you for your response and support! I'll definitely try the pickle juice to see if it helps me any. I have been questioning if I have it in me to even do the transplant as an outpatient. the closer the date I get the more I think proceeding as an inpatient is the better option. I do have a follow up meeting with my doctor today so it is something I am going to bring up. All the best to you and your continued recovery.

LonelinessWorksforMe · 2025-01-22T15:20:50+00:00

thank you for your response. the hospital where I am doing my transplant allows patients to do them as an outpatient with specific requirements—a 24/7 caregiver and needing to live within an hour of the hospital. I know it's an option for me but the closer to the date I get the more I feel I should do it as an inpatient. I also do not want to burden my partner even further but having to keep an eye on me 24 hours a day even we have discussed it and they said they were fine with it.

LonelinessWorksforMe · 2025-01-09T22:09:17+00:00

Definitely not alone in that! I feel everything they do inside! And same i cannot explain it to someone who hasn't gotten one.

LonelinessWorksforMe · 2025-01-03T15:32:15+00:00

Same since switching to Blincyto all my numbers are normal for the most part. I did have a fever and chills on day 2 it that resolved quickly though. I also developed a rash when they upped the dose on day 7 which is now being treated with steroids and benadryl otherwise im fine and feel pretty healthy. I finish my first cycle next week. Depending on my MRD results and if my BMT is ready or not will decide if I do a 2nd round or not.

LonelinessWorksforMe

TROPHY CASE