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CLL Treatment And Residual Neuropathy

CLL Treatment And Residual Neuropathy

Hello,

My girlfriend, 64, is a previous leukemia patient and survivor. She also has some neurological issues that affect her memory. This, coupled with the fact that she was also very sick with leukemia, makes it difficult for her to recall some of the details of the time span in which she was sick.

My girlfriend gets exhausted quickly, which we attribute in part to her past illness, but she also has a lingering neuropathy problem.

She thinks that she was taking a drug by the name of… read more

A MyLeukemiaTeam Member said:

Hang in there. I would like for you to think About finding a good oncologist. I have cll and retuxin drips for four Mondays in March. Didn't work as well as it did so oncologist called for genetic blood test. My oncologist them put me on Venclexta and I'm doing well. After retuxin drip I did experience neuropathy on fingers but it went away.

posted 8 months ago
A MyLeukemiaTeam Member said:

I had Rituximab, 8 weekly infusions in May/June 2016, and 4 weekly infusions in January 2019 for splenic lymphoma. I also was diagnosed with CMML in Sept 2016 and have been on watch and wait for the CMML. I also developed neuropathy in my feet and fingers.

My GP said this was common in people who have had chemo. I guess it's a trade off and better than dying from lymphoma. The neuropathy is slow moving but gets a bit worse year by year.

Presently it affects my fingers from the big knuckles to the fingertips and the soles of my feet. The fingers feel like they they are being pinched or squeezed, and the soles of the feet feel tight and numb. I haven't not been able to walk, but have to pay extra attention when I drive to feel the gas and brake pedals.

The symptoms are constant, and I haven't had any incidents like those you describe except in my right eye which periodically drops out of stereo view (giving me two separate off kilter images instead of one).

I have to close both eyes for a few minutes for the muscles in the bad eye to relax and get back into focus. If I need to see I close my right eye and just view with my left until I have a place to sit down and close both eyes. As far as I know neuropathy is not reversible, nor can it be treated.

posted 8 months ago
A MyLeukemiaTeam Member said:

Bobspez: exactly the type of info that we're looking for. Thank you.

Ok, so the neuropathy is possibly more common than we thought. Evidently, you roll the dice as to where it might show up. We aren't treating it successfully either. Is anyone? I'm still looking.

The double vision...now we have that answer as well. It happens to Diane fairly often and we have an appointment with a neuro (for the brain fog and the double vision) coming up, following a recent EEG and blood test for brain chemial levels.

Well, I guess that I'll just stay close and keep an eye on her.

posted 8 months ago
A MyLeukemiaTeam Member said:

are you taking meds. for CMML? I was diagnosed with CMML in 2019. so far just monitoring blood. I don't know what to expect.

posted 8 months ago
A MyLeukemiaTeam Member said:

Yes, we plan to do some further checking. It's been a good while since she's seen him so I'm sure that her PCP will need to give her another referral. It may not even be the med that I quoted that she was taking. We're going to do more investigating.

Thank you for your response,

K.C. and Diane

posted 8 months ago
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