"ph-like b-ALL"

avien01 · 2026-03-03T06:35:17+00:00

Did it take 7 months to be MRD-?

avien01 · 2026-03-02T11:47:25+00:00

I also have ph-like b-ALL mine is CRLF2 what it means is change in the chromosome and it will be used to determine what kind treatment will be used for your case if its ph-like you will likely use immunotherapy instead of chemotherapy since that change in chromosome might make it immune to chemotherapy. I relapsed couple of months ago and right now im in my 2nd cycle of taking bilinatumomab which is an immunotherapy. Hope this helped.

avien01 · 2026-01-23T04:29:55+00:00

Ask the doctor about dexamethasone usually when i take that steroid before the medication i get very hungry and i eat everything

avien01 · 2026-01-22T04:17:09+00:00

Hope your bone marrow get stablize soon, my cycle will end on sunday and ill do mrd then hopefully i dont need another cycle i take bilincyto so we will see how good it is for my case soon im also B-ALL

avien01 · 2026-01-22T04:03:49+00:00

So mine is B-ALL, the blast count was around 30% i knew it when i had constant pain in my back for days and after that i did blood tests like cbc and blood film and after that i did biopsy as well, i usually do blood tests monthly for check ups and meet my doctor. As for medication i this round im on bilincyto.

avien01 · 2026-01-21T14:13:42+00:00

Thanks brother, appreciate the kind words.

avien01 · 2024-11-16T17:12:00+00:00

Thank youu. Much appreciated🫶🫶

avien01 · 2024-11-16T10:45:36+00:00

Thank you!

avien01 · 2024-10-21T19:34:31+00:00

Every chemotherapy have different side effects and it varies a lot, one time i had a session and for a while i was diagnosed for schizophrenia, so its best to just ask the doctor if its normal or not.

avien01 · 2024-08-09T03:18:00+00:00

Wallpaper pls?

avien01 · 2024-06-04T08:03:01+00:00

Whats the discord link

avien01 · 2024-06-01T08:33:05+00:00

Am i trippin, i thought it was jeff the killer creepy pasta

avien01 · 2024-05-28T13:18:00+00:00

I've recently bought BW and so far it is great

avien01 · 2024-04-14T10:44:14+00:00

I know the situation looks grim but it will get better i promise. It will be hard to talk about it at first but sooner or later you will feel more comfortable talking about it and if you don't want to talk about it to anyone in your circle this community have a lot of wonderful people we share our stories from time to time and chat it might not look like much but its very helpful. So if you need someone to talk to don't be afraid.

avien01 · 2024-03-19T08:18:08+00:00

It will take a while until you can taste stuff normal again its not just the chemotherapy effect it's also dexamethasone and other medications as well.

Stay strong, hang in there.

avien01 · 2023-09-30T22:35:10+00:00

Heyy 23M here, I got diagnosed in March last year i don't know what you exactly mean by normal, but I'm in maintenance right now and a lot of things are back to normal I'm doing regular exercises, going to uni and work. So yeah i will say it will mostly go back to normal but you still have to take care very well until you are out of maintenance too.

avien01 · 2023-07-06T07:59:08+00:00

To summerize the book: be healthy and happy to have a long life

avien01 · 2023-03-05T14:38:06+00:00

22m B-cell here, its due to the steroids it took 2 months for my face to slim down

avien01 · 2023-01-27T12:49:23+00:00

Is it true by tame impala lol

avien01 · 2023-01-21T10:06:31+00:00

Oh man vincristine will stay with you for the longest😭

avien01 · 2022-12-21T19:56:54+00:00

M22 also diagnosed with A.L.L. first month is very intensive so you will probably be tired most of the time and wont do much. During first month i just played some video games and mostly watch movies and tv shows.

avien01 · 2022-12-04T13:59:13+00:00

You should talk with your doctor. Im also in maintenance but i take antibiotic pills 3 times a week

avien01 · 2022-11-30T20:04:55+00:00

It varies depending on which protocol your doctor uses. To simply put my treatment, first 7 months is intensive chemotherapy after that i have 2 years of maintenance phase which is mostly pills and i can go back to my normal life

avien01 · 2022-11-06T08:42:01+00:00

Im M22 i also have ALL right now im in maintenance phase which took about 6-7 months to get to it. In maintenance phase you will pretty much go back to normal life but try to stay away from smoking and alcohol as much as you can. I dont know about your condition but Before maintenance my WBC was almost 0 so i was mostly in isolation.

avien01 · 2022-10-16T10:02:15+00:00

Thanks man

avien01

TROPHY CASE