Anybody else have blackout memory issues?

Posted by cioli @cioli, Jan 17 10:59pm

I'm on a drug called pomalyst. I have Multiple Myeloma
I was given 4 years when I first found out I had it. I got chemo for 18 months. That kept it from getting worse. Then I had a Stem Cell Transplant. Now I'm doing well every day. The only issue is I get memory blackouts. I walked out of my house and came to a mile away. Went home and my doors were wide open. They last an hour or so but I'm foggy the rest of the day. I have had 3 since going on the Polmalyst. I have had MRI's, CT's, and Pet scans. Nothing shows up.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Jody aka mojo244 | @mojo244 | Jan 18 5:20am

I thought my brain fog was bad!
Sorry you’re having these blackouts. I see that your medication has a long list of side affects but blackouts are not one of them but maybe it should be added?
I wish you the best in finding an answer and solution!

MOJO

Ginger, Volunteer Mentor | @gingerw | Jan 18 11:20am

@cioli Welcome to Mayo Clinic Connect! It's great to read that you had a successful stem cell transplant. May I ask where it was done?

I am on Revlimid as part of my treatment for multiple myeloma. One thing I notice is some lack of attention, or brain fog as it were. I can associate it to taking so many different things right now, as there are comorbidities. Perhaps a review of your complete medication list [over-the-counter and prescription] to see if there is anything that might be attributing to the brain fog? Have you checked with your medical team for their thoughts, yet?

Let me know, and let me know if you have additional questions/concerns!
Ginger

te1 | @te1 | Jan 18 11:43am

I have had a lot of side effects from my RAI 131 treatment. I noticed increasing memory fog since my second treatment of RAI 131 for thyroid cancer. Scary to not remember simple things, events, names. Not given any encouraging news that it will get better. I just hope it doesn't get worse. @cioli wonderful that your transplant was successful. I hope you have some resolution with your memory fog. Is it a permanent side effect to the medication? Best of luck to you.

Colleen Young, Connect Director | @colleenyoung | Jan 21 8:49pm

In reply to @te1 "I have had a lot of side effects from my RAI 131 treatment. I noticed increasing..." + (show)

@te1, you may also wish to join the discussions in the Thyroid Cancer support group here: https://connect.mayoclinic.org/group/thyroid-cancer/

How is your memory fog today?

Lynne Marie | @lbrockme | Jan 25 10:00am

In reply to @te1 "I have had a lot of side effects from my RAI 131 treatment. I noticed increasing..." + (show)

Sometimes it can cause memory fog, but it's also possible that some of the trauma we experience in treatment and situations like this ... can linger and affect us. Consider talking with someone about all your experience, like a Chaplain, faith support, therapist or support group. Just talking about our experiences can help process it mentally as well.
Sending hugs!

cioli | @cioli | Dec 9 6:35pm

In reply to @colleenyoung "@te1, you may also wish to join the discussions in the Thyroid Cancer support group here:..." + (show)

I ended up have 5 blackouts. The did not believe that the Pomalyst was causing it. I knew it was.
I did a unapproved eperiment. I quit taking it for 25 weeks with no issues. They took me off it and put me on Revlimid. That causes the fog but nothing like the blackouts

Please sign in or register to post a reply.