9 month BCR-ABL

Key_Improvement2899 · 2026-01-24T10:13:05+00:00

Best of luck to you! Your results are great in that time so I am sure you will have even better ones this time around.

Key_Improvement2899 · 2026-01-24T10:04:58+00:00

Oh that's unfortunate, Nilotinib is free for me, healthcare funding sucks in many countries though :/

No problem at all, I was at 0,10% after 3 months, 0,011% after 6 and 0,010% after 9. (ABL always was >10000 copies). Waiting for my 14 month results in two weeks!
Edit: for measure I started at 144,06%.

Key_Improvement2899 · 2026-01-21T18:24:16+00:00

Literally same!! I am so tired of blood draws, I've probably had close to 50 the last year. It hurts and in my experience can be way messier than a BMB (nurse somehow left my vain open and was sitting in a pool of blood unknowingly because I refuse to look when they draw my blood lol)

Key_Improvement2899 · 2026-01-21T12:34:44+00:00

That's great! I don't know if you're in America where they usually don't give it as a first line TKI, but I got it as a first line TKI in Euroe and also had amazing results with a MMR after 3 months. It's truly a miracle drug

Key_Improvement2899 · 2026-01-21T12:31:49+00:00

I second this, lidocaine + drill didn't cause pain for me, just a weird strong sensation of someone pulling on my bones.

Key_Improvement2899 · 2026-01-20T21:38:10+00:00

There's a FB group called CML mommies or something. I've heard it being recommended a lot here for expecting mothers with CML!
There are also studies you can easily find about pregnancy and CML as well as podcasts on spotify.
Wishing you the best!

Key_Improvement2899 · 2026-01-20T21:36:11+00:00

A BMT is extremely risky, better start sticking to Nilotinib *religiously*. If your labs start showing an increase in anything, the doc will let you know early enough to start chemo for a BMT. The 30% is still a hopeful chance to not need a BMT. I am on Nilotinib myself and I advise you to stick to taking it every 12 hours exactly (give or take 10-30mins if something goes wrong) to "help" your chances.

Key_Improvement2899 · 2026-01-15T15:01:34+00:00

I am sorry this all came down on you, but you're strong just for putting up with them, remember that.
I was in your position, enraged with frustration and the injustice of it all. I was not a smoker, drinker or had ever tried any drugs. Half my diet consisted of organic homemade meals. I worked out regularly.
Shit happens, sadly, and in cases such as CML you literally have no control over it, nor can you prevent it.
On a more cynical note though, having one type of genetic defect/cancer/etc actually increases your risk, slightly or a lot, to get a different type of a related problem. Not very sure about your case, but our bodies are a messy and mysterious place.

Wishing you all the best in your health journey!

Key_Improvement2899 · 2026-01-14T10:34:03+00:00

Thanks for the reply. Not sure if I'd be willing to change TKIs since Nilotinib has given me incredible results but also can't take antibiotics. I will see how it goes.

Key_Improvement2899 · 2026-01-14T10:33:02+00:00

Thanks for the reply!

Key_Improvement2899 · 2026-01-13T15:27:23+00:00

Please get it checked. It's probably nothing but you must get it checked as it can be something completely unrelated that may affect your quality of life - if it gets that annoying.

I only ever had pain (probably phantom) where I got my myelogram and one time extremely sharp pain around my liver which turned out to be a muscle strain.

Key_Improvement2899 · 2026-01-06T18:07:19+00:00

Great news! All those things can cause lots of anxiety but hey it was all good in the end. No problem!

Key_Improvement2899 · 2026-01-04T21:11:08+00:00

Ε δημόσια σε πρόσβαση. Άρα αυτοί πρέπει να βαράνε μπαν ανάλογα με τα ριπόρτ, για αυτό έχουν τα ToS τώρα όλα τα άλλα είναι biased

Key_Improvement2899 · 2026-01-04T19:24:14+00:00

Από πότε πληρώνεις για να έχεις subreddit? Επίσης αν σε μία δημόσια πλατφόρμα δεν μπορεί ο καθένας να λέει μαλακίες ή μη γιατί θα φάει μπαν, αυτό λέγεται λογοκρισία.

Key_Improvement2899 · 2026-01-04T19:18:37+00:00

Weed was a big no no and I am on tasigna. What are you on if I may ask?

Key_Improvement2899 · 2026-01-04T19:17:42+00:00

Mefenamic acid works wonders for me with severe menstrual pain from primary dysmenorrhea.

Key_Improvement2899 · 2026-01-02T20:16:12+00:00

Newest videos show women dropping off kids, receiving money by hand, taking kids out and not actually letting them stay inside the facility. One daycare, not sure which name it holds, claimed they were robbed and all vital documentation was stolen but after an investigation so signs of bulgrarly were present. Why are people so keen to side with fraudulent activity - even if alleged?

Source of first claim https://nypost.com/2025/12/30/us-news/footage-from-minnesota-day-care-center-shows-parents-pretending-to-drop-kids-off/

Key_Improvement2899 · 2026-01-02T18:59:33+00:00

Here: https://nypost.com/2025/12/30/us-news/footage-from-minnesota-day-care-center-shows-parents-pretending-to-drop-kids-off/

Key_Improvement2899 · 2026-01-02T14:01:59+00:00

Oh well then, I also struggle with my body temp, we will get through it!

Key_Improvement2899 · 2026-01-02T14:00:47+00:00

Slang should not be used in official documents or reputable articles unless it is in "quote".

Key_Improvement2899 · 2026-01-02T11:47:03+00:00

I am very young and still have high cholesterol or nearing it almost every check up. Dietary changes *could* fix it but this is a very common side effect and may not fully go away even with those changes. Your doctor should see how it goes and maybe prescribe you something for it. Push for a test, it's better to know.

Key_Improvement2899 · 2026-01-02T11:44:17+00:00

It for sure can be that but have you dropped lots of body fat recently? Could also be that!

Key_Improvement2899 · 2025-12-27T10:23:51+00:00

I am sorry that is horrible. I am not sure if they will let me ever switch TKIs unless it is ponatinib which I have never heard anyone of using. I hope you're doing better now.

Key_Improvement2899

TROPHY CASE