I was diagnosed with CLL back in November and am currently on the V&O treatment plan.
I have 2 infusions left, one in April and one in May and have been on Venetoclax since January and am on the full dosage of 400mg per day. So far I am handling all the drugs pretty good with no major side effects except sore muscles and joints but I can deal with that.
I have noticed over the past few days that my skin feels itchy all over and am curious if this is due to the Venetoclax or the Obinituxmab. Has anybody else experienced this? If its from either of these drugs why would it happen a few months later? I would think it would have happened earlier and got better over time.
Thanks in advance for any suggestions or similar experience.
Kent
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tenniselbowz
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Have you recently changed any detergent, or fabric softener, or started using Febreze? Is it possible a load of laundry wasn't rinsed properly? Could theere be soapy residue on your dishes? Did you recently get, or be exposed to, a pet? Have you tried new foods, or changed the amount of foods you currently eat? Are your current foods now in "new" packaging? (many manufacturers are changing recipes slightly in response to inflation this past year) Has there been pollen in the air, and it got into the house and on clothes/sheets/bed/couch? Have you switched brands or *any* personal or ingested products like shampoos, makeup, lotions, supplements, mouthwash, etc. or do any of them have new packaging, or are advertised as "new and improved"? Have you painted anything, or refinished any furniture or flooring? Did you purchase anything that can give off irritant gases, like manufactured furniture or rugs/carpet?
There are a host of things that can contribute to itchy skin, in addition to the drugs.
Hello I just wanted to say hi and to let you know I have experienced the same and my doctor gave me zerobase and zerocream - as this gave the skin a deep moisturizing and a great skin barrier. I have used this for a year and a half and only get an itchy head now and I pop a bit of the above cream on my head, where needed, and it works - it has been a total game changer for me. Ask your consultant and doctor and see what they think. All the best.
I get itchy and have been using Aveeno eczema lotion. It work wonderful for me. If you have a rash with itching I would check with your Dr. I am also on O&V.
I did have some itchiness, more so at night after having slept for a while. Although this is not a proven clinical observation, I attributed the itchiness to taking Venetaclax before bed rather than during the day while I was most active. In addition, I would have increased joint arthralgia and muscle aches after having slept a bit too.
I took the venetaclax in the evening right after dinner to minimize the experience of nausea.
Hi Kent. I similarly developed itchiness during my V/O treatment. My onset was during the last month of O. The itchiness progressively worsened to the point that I was unable to do most activities as increased body temperature or physical stress brought on level 8-9 pain. It was totally debilitating and I had to stop driving for a short period of time. Relief was quick with cooling down my skin temperature. After 3 months I eventually developed a rash (small red spots) with the itchiness. Ultimately I have been diagnosed with cholinergic urticaria (hives) by a dermatologist. Claritin was suggested but did not help. I then switched to Allegra and am back to normal activities taking one 180 mg pill/day. The itchiness is still occurring but at a 1-2 level of pain. The pharmacists and hematologist have suggested that this is not related to V/O. I am also exploring food induced urticaria referencing this text: Food Allergies and Food Intolerance; Jonathan Brostoff, MD. I have learned that everyone responds differently to anti-histamines and that different ones should be tried. I have also learned that H-2 anti-histamines are worth exploring but have not done that yet due to the success with Allegra. Hope this helps.
The above is from a blog from Dana -Farber. I do not know if there is any science to back this up, but thought it was interesting.
I had been having a lot of trouble with itching, especially at night, and then I saw something online referencing CLL and itching. I could not remember where I saw it, so I googled it and found this. Who knows?!?!? CLL tends to affect lots of systems.
After 10 months on Venetoclax I developed raised regions on the skin on my lower legs and arms that began to itch. The regions themselves softened leaving only the skin that still itched. Obviously there is no proven causal link with Venetoclax from this correlation. Betnovate, a topical steroid cream, has helped. I have now completed the Venetoclax course but residual itching remains.
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