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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Velcade vision side effects?

by brownk on Sun Jun 12, 2011 4:53 pm

My Mother started a Velcade/Cytoxan/Dexamethasone treatment once a week, 4 weeks ago. She has begun having visual disturbances. I notice that Velcade and dex both have visual disturbances (even blindness in certain cases w/ Velcade) listed as rare side effects. The regime seems to be working so she would be hesatent to stop it. She sees her oncologist tomorrow. Has anyone else had this problem?

brownk

Re: Velcade vision side effects?

by Snip on Mon Jun 13, 2011 10:01 pm

I think that part of the neuropathy set of side-effects include visual and aural components. I have fuzzy sight quite a bit lately (especially bad when I am more tired). Also, there's a weird little 'staight lines quiver and blend' thing that goes on for a couple of hrs after I take my dex, but it seems to fade as the hours pass. Another: my tinnitus has been pretty much nuts for more than a month, and I notice the volume bar on the tv is several notchs higher most of the time, and I am saying "What?" quite a bit more.

I'm on the 21-day classic cycle for Dex/Velcade/anti-viral, btw. Dex dose is 20mg 2x per day on the cycle days, and Velcade at 2.8 (not sure what that 2.8 means). Just started cycle 3. Transplant next month!

Definitely ask the doctor.

Snip
Name: John Snippe
Who do you know with myeloma?: me
When were you/they diagnosed?: Jan, 2011
Age at diagnosis: 56

Re: Velcade vision side effects?

by brownk on Wed Jun 15, 2011 7:31 am

Well, the Dr. stopped the treatments for one month. Why do Drs not like you to bring up something you found online? I went to the Velcade website to check side effects and that's where I found the info. on Reversible Posterior Leukoencephalopathy Syndrome (RPLS), which is a rare side effect that can in some cases cause blindness. I printed it out so she could take it with her to the appointment. Dr. tells her that's not what she is taking, it's different. What? She is on Velcade. Wish I had been there. Unfortunately I can't go to every visit and he is the only oncologist in town.

brownk

Re: Velcade vision side effects?

by meeshymeesh on Thu Jun 16, 2011 10:32 am

Hi ,

I am just about to start Velcade / dexamethasone / Cytoxan [VCD / CyBofD] as my Revlimid / dex / Velcade stopped being effective after 4 cycles. I do have problems with my vision - Not from multiple myeloma though.

Michelle Gillet

meeshymeesh
Name: Michelle
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2009
Age at diagnosis: 40

Re: Velcade vision side effects?

by brownk on Tue Jun 21, 2011 7:37 am

My Mom had blurred vision, some loss of vision and purple lines through her field of vison, she also had occasional starbursts. When it started she thought she may have had a detached retina. The eye Dr. found that she didn't. Velcade does have an uncommon (less than 1%) side effect of visual impairment. The oncologist stopped the Velcade/dex/cytoxan for a month to see if her vision improves.

brownk

Re: Velcade vision side effects?

by Canuck Bob on Sat Jun 25, 2011 10:39 am

I'm a couple months in with Vel/Dex and do experience some vision disturbance. I have good uncorrected vision because of lasik a few years ago. The level is quite manageable and not a major concern yet. It is accompanied with a feeling of slight pressure in the eye.

I picked up a quality eye drop and it helped a lot. Also I drive the open road for work and found my eyes do better when I get some day light long range viewing time regularly. To be honest this laptop screen is a primary cause of discomfort as well. I get relief from sitting in the yard and focusing at a distance as well. I think it is the natural light that does the most good.

I picked up some ear ringing but again my tolerance is quite high.

Canuck Bob
Name: Bob
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb. 2011
Age at diagnosis: 57


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