Chronic Myeloid Leukemia (CML)

Great to hear your having improvements with Gleevec. If you don’t mind me asking, what kind of side effects are you experiencing?

Some of my issues related to the Gleevec (I believe) show up as some GI (loose stools, diarrhea, urgency), fatigue, blurry vision, and possibly some sinus pain/pressure. Symptoms for the most part are manageable. I feel very fortunate that the medication is available to me and has helped in keeping the CML in check. We’ll be having a checkup in a few days to see how things are looking.

I’m with ya being fortunate having something to keep CML in check. Sorting out side effects from life changes took me a while and a lot of conversation with my doctors. At least for me with the Sprycel I have some random GI issues( diarrhea and nausea), headaches are kinda sporadic but not as bad as when I first started on it. Fatigue, muscle/bone pain, and my body temp seem to fluctuate a lot seem to be the most consistent side effects. I’m 46 and haven’t had a spleen in over 20 years either.

So I had a follow up appointment yesterday. My number BCR went up slightly which is normal from what I was told. I am having issues with edema effecting my face and legs. So after some more blood work and an EKG the plan is to switch to Nilotinib if the EKG is good. Nilotinib seems to have a long list of side effects also and requires 2 doses a day. I guess we’ll see how it goes in a couple months.

@living, @mcullen123 may be able to share their experience with Tasigna (nilotinib).

What suggestions did your symptom management nurse have for dealing with edema? Does raising your legs or compression stockings help?

I don’t have a symptom management nurse. I’m pretty familiar with managing lymphedema and compression sleeves. Oncologist didn’t suggest anything other than changing my treatment plan.

Wishing you well and hoping for good results from the new treatment plan.

I’ve been thinking a lot since my appointment Friday and changing my treatment. I sent my dr a message via the Mayo portal. The suggestion to change seemed very hasty. My oncologist didn’t suggest any option to manage the edema or treat it, let’s just try this other drug. I haven’t had an in person appointment with my oncologist or my regular physician since CoVid. We didn’t even fully discuss the nolitinib other than needing an EKG first and oh ya you have to take it twice a day. Like every thing else I start doing my homework. It’s twice a day on a schedule, no food 2 hours before or an 1 hour after either dose. Along with a long list of other stuff.
I’m not apposed to making a change if it’s the best option especially long term. Maybe I’m overthinking this, just feels like this was the easiest option on his part. Hopefully I get a response sooner than later. I also asked if the Mayo cancer team thought this was the best option without try anything to help the current side effects. Let’s just start a new drug see what happens.....

@living, I think you're wise to get all the information you need to make an informed decision. It sounds like you have several outstanding concerns and questions that you'd like to discuss. Even if you, in the end, decide to accept the change of treatment, you'll be able to feel more comfortable with the decision. I'll be interested to learn what you find out.

Hi. I was diagnosed with CML in Jan. 1995. I was 20 years old. I'm 47 now. Currently taking Dasatanib, 100mgs daily. I'm in what the Dr calls a 'major molecular response' and hoping (fingers crossed) that I might be lucky enough to come off the medication to see if it cured the cancer. However, saying that. Being on chemotherapy for nearly 25 years has taken its toll on my organs. I'm thankful to still be alive and kicking. Especially after the initial 1-3 years left to live prognosis. 💖