r/CML

So M66, Dx January 2026. Have been on Imatinib 400 mg daily for six months. Had my blood draw for 6-month PCR yesterday and then drove to work.

When I got out of the car I got hit with a cramp at the top of my stomach/bottom of my rib cage. I’d had a few of these since starting Imatinib and they always go away after a few seconds but this one didn’t let go for a few minutes.

Anything I ate seemed to stick just before getting to my stomach and cramps and gas continued all day. Pepto and GasX helped.

So far today only a buttered biscuit for breakfast and some ginger ale I’m sipping.

I’ve got a message in to my oncologist but wanted to see if this group has any collective wisdom on dealing with this.

Hi everyone,

I'm posting on behalf of my boyfriend (31M), who has chronic-phase CML.

He has been through multiple TKIs, including ponatinib, and is now on asciminib. His blood counts have improved, but his BCR-ABL PCR has remained persistently elevated. Following his most recent PCR, his asciminib dose was increased. Although there has been some reduction, it has been very slow, and his hematologist has started discussing the possibility of an allogeneic stem cell transplant if his response doesn't improve.

I know everyone's journey is different, and I'm not looking for medical advice or predictions.

I'm hoping to hear from anyone who has experienced something similar:

* Did your BCR-ABL plateau at a high level for a while?

* Did switching dosage eventually help?

* Did you go on to a stem cell transplant even when CML in chronic phase?

* How did you and your partner cope emotionally during that period of uncertainty?

Most stories I find are from people whose PCR drops quickly, so it's been hard to find experiences that resemble ours.

Thank you to anyone willing to share.

Taking Nilotanib (Nicmel) 150mg 4x a day for 2 years. Recently, I experienced muscle cramp in calf area in the morning before waking up at least once or twice a week. Is this one of the side effects of the medicine? Has anyone experience it? Thanks!

Back in January my BCR/ABL was at .021 and I was pretty happy with it especially since I had only been diagnosed eleven months earlier. In March it was still at .021 and they decided that instead of coming in every month, they'd only have to see me once every three months. I was thrilled that the treatment was working so well!

Still I was noticing some unfavorable side effects from Sprycel 50mg, particularly in fatigue and apathy. So, in May and on my own I started cutting my pills in half and some days I wouldn't take any at all. Within two weeks I got some of my energy back and was feeling great. Actually did a good amount of yard work that I'd been meaning to get to but never felt like it. I figured when I spoke to my doctor in June I'd see what my numbers were and maybe I could stay at 25mg.

In early June I had to go to the hospital for what turned out to be a perforated gall bladder. They wanted to take it out right away but found out that the Sprycel was also keeping my white blood cell count low. The surgeon was worried about infection so it was determined I should go off Sprycel altogether for about a month until my wbc count came up some.

They finally got around to removing my gall bladder two days ago. So for three weeks I took a half dose and for five weeks I took nothing. I had a blood test just before I had surgery and was rather worried about the results. Two months of little or no Sprycel. What if I really screwed up my treatment?

I got back the results about two hours ago. My BCR/ABL went from .021 in March to .005 in July with little or no medication! If I wasn't in so much pain from the surgery a couple days ago, I'd be dancing and having a celebratory shot of whiskey! I don't know what happened in the couple of months with almost no Sprycel but I know this can't be a bad thing! I don't want to jinx it but in my head I'm saying the words "treatment free?"

So, how's that for a feel good story? Keep the faith everyone. It can happen!