Post transplant feedback

[Jennchap1]

Hello again. I am three months post stem cell transplant for NHL that crossed the blood brain barrier into my CNS. There are many restrictions for me and I wondered who else was in the same boat? Thank you.

[Tinkerbellcgy]

Jennchap1, would it be possible to outline some of the restrictions that are limiting you? I am also unsure what the phrase "crossed the blood brain barrier into my CNS" means. Would you kindly elaborate for me?

I underwent an autologous stem cell transplant and can say that for the first 100 days, I was restricted as is normal for transplant patients but once past that time the restrictions eased. It wasn't all that long after that time period that life started to resume normalcy.

[Jennchap1 in reply to Tinkerbellcgy]

Hi there,

My systemic NHL crossed into my central,nervous,system and I wasn't diagnosed until I was in very bad shape. All my blood tests and even a CaT scan came back normal prior to the MRI which finally gave the diagnosis. It had lesions/tumor on my brain stem/cerebellum. I had debilitating fatigue, balance issues, etc. I kept begging my local cancer center for help, but finally went to my internist who got me to the diagnosis! Nsaved my life. After 8 rounds of chemo thatmcan crossmthe blood brain barrier I too had an autologous SCT. That was Nov 4, 2016. I am driving again and doing fairly well, but am frustrated about not being able to go,to,grocery store , etc and I have been told By my doctor that I can't be around more than 4 people at a time. Like you, I have to restart all my immunizations so I want to be careful and not expose myself to germs. I,can't get on an airplane and join the family ski trip this year nor can I waterski yet again this summer because of the water. So it is just a waiting game I guess, but worth it. Jennifer

[Tinkerbellcgy in reply to Jennchap1]

Doing things like grocery shopping should be able to be done after the 100 days if you take the necessary precautions. I ensured that when outside or in public, I always wore a procedure mask and gloves and had a supply of bacterial wipes handy. I live on my own and needed to do everyday activities both before and after the 100 day threshold. The garbage needed taking out, the lawn needed mowing, the house needed cleaning, the kitty litter needed changing, shopping needed to get done, driving to run errands and medical appointments, etc. and it all got done at my slower pace with masks and gloves for 6 to 8 months post-transplant. The only activity I waited 18 months to participate in was my aquasize class.

I do realize that everyone is different and progresses at their own pace. Being on my own with little support, I had to progress at a much more rapid pace in order to tend to my everyday needs and activities.

[Jennchap1]

That is what I told my husband that those who are on their own just can't possibly go without doing the required daily tasks. My docs are pretty strict, but as you said, we can be cautious and careful. Thank you so much for responding!

[l-al]

I had a transplant in 1999. I had no restrictions I can remember. It was done at Music and was glad to get hone. The right only restriction was waiting for my platelet count to come up. I wish you well.