Chronic leukemia patient with concerns of ALS

Status
Not open for further replies.

trailcml

New member
Joined
Sep 5, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
Hi, I have been on a drug called imatinib for chronic myeloid leukemia for 7 years now. My response was good but the fatigue was hard. So, 2 months ago we switched to dasatinib (a 2nd generation drug to fight CML). About 2 weeks ago, I started feeling tingly and numb feet and hands with a burning sensation in my lower cervical spine. In the last couple of days I've noticed these muscle fluctuations in my calves and the pace has picked up. Whereas I didn't notice them before I can now feel the "pulse" when it happens. My legs are getting progressively weaker going up to my knees and I feel a little wobbly when walking. I'm still strong enough to do any and all tasks but the numbness and tinglys in my feet/hands, burning sensation in neck, muscle flutters and neck popping when I move my heads is making me concerned about ALS. I'm also feeling fevery with periods of being cold, then clammy sweaty hands. My temp seems to be fine though. It seems to be progressing much faster than what I've read but I don't know.

On the advice on my hematologist, I've stopped taking dasatiinib on the rare shot this is related to a peripheral neuropathy. It's been 3 days now and I see him in 4 more days. I'm also trying to line up a neurologist after spending the night in the ER a couple nights back to rule out any stroke (family history), heart attach and spine issues. I had a CT scan on my spine and head with contrast but that didn't show anything. My bloodwork all came back normal albeit slightly anemic (HGB, HCT and RDW all slightly low). My thyroid TSH was high, but T4 was fine.

Would love to hear from others out there. I'm worried. My wife is telling me to be positive and I'm working hard to do so.
 
Pretty much any chemo can lead to neuropathy and infection/systemic unwellness. I see no reason to worry about ALS. Sometimes rechallenge works, sometimes a new drug is just not right for you.

Best,
Laurie
 
Thanks Laurie. The drug I take is a targeted biological drug specific to the CML gene. Very rare side effects of peripheral neuropathy have been reported. My oncologist doesn’t believe it’s neuropathy and has never seen such a side effect in his patients. Today I’ve been very uneasy, don’t feel like eating and unstable when walking. Is dizziness a sign of the beginnings of ALS? The burning sensation on the back of my neck is really bothersome. I do feel like my legs are much weaker than just a couple of days ago.
 
No those things you are experiencing are not ALS related. Even feeling weak in the legs points away from ALS.
Try reading this post really carefully to help in this

Sorry you are experiencing this stuff. If your oncologist doesn't have ideas it may be worth going back to your PCP as possibly it isn't related to the meds change.
 
Tillie is right -- if the new chemo does not prove the answer, there are plenty of possible systemic ones. CML and chemo are both hard on the body, and may be causes or exacerbating factors, but that does not mean nothing can be done.
 
Status
Not open for further replies.
Back
Top