My husband was diagnosed in 2017 with cll, he began treatment with Ibrutinib but taken off with anemia, possible pneumonia, and hospitalized. Next treatment after having chromosomal markers checked, was Venclexta. He did well for awhile, but anemia appeared again and doc put him on high doses of prednisone. It is very difficult for him to stay on pred, and it hasn't created relief from the anemia so he is no longer on pred. The hemoglobin is going down steadily, and other markers show the anemia is worse. Next treatment suggested is Rituxin---4 weeks of IV. We researched the side effects and it sounds pretty nasty. He's already becoming weaker. Any suggestions? His vitamin/mineral levels are fine as we keep a totally cancer-free kitchen and lots of neutraceudicals (herbs, vitamins, green smoothys, etc etc. Suggestions appreciated!!!!
Cll, venclexta, and anemia: My husband was... - CLL Support
Cll, venclexta, and anemia
Hi I had rituximab on the flair trial. I had tummy pains and diarrhoea after the first infusion for 1 day only. I had 5 more infusions without any side effects.
I try not to dwell on potential side effects of drugs we may need to take for this reason.
I hope you find this information useful.
Good luck
Ann
Does your husband have hemolytic anemia? It’s a complication of Cll where our body attacks our own red blood cells causing anemia.
Steroids and Rituxan are both used to treat hemolytic anemia. The Rituxan can also help with Cll.
I think most people tolerate rituxin fairly well. It seems like a reasonable course to me. Hopefully if the anemia gets under control and your husband can start back on ibrutinib or venetoclax. Ivig infusions can also help anemia.
I was given 4 infusions of rituximab to treat my haemolytic anaemia and had no side effects. These were given in the hospital and I was monitored closely.
Has your CLL expert doctor suggested pausing all the lots of neutraceudicals (herbs, vitamins, green smoothys, etc etc. Suggestions appreciated!!!!?
There are potential unknown side effects and interactions from "natural" but unstudied ingredients. Pausing for a few weeks or a month - until a few blood test results are obtained might indicate whether they are contributing to the anemia.
Len
I was told by a consultant that we imagine we are feeding our bodies vitamins but there was a question mark over these. He said we could be feeding the cancer. I stopped taking multivitamins just incase. I try to eat a balanced diet including iron rich foods. Pity I love sweet foods. Im certainly not a goody two shoes. Anne
I agree with Len about simplifying the number of things your husband is taking, just as people with possible food allergies do - e.g. eliminate dairy, glutin, etc., then add things back one by one. I'm doing that with a dog now who is on a hypoallergenic diet, which excludes even very small treats that aren't hypoallergenic, and have done it myself over the years, both with foods and meds. looking to eliminate various symptoms.
Has the doctor done a full anemia workup and determined that this is hemolytic anemia? There are many causes for anemia. It's important to rule out things like internal bleeding, a specific vitamin deficiency, or an iron deficiency. The last time I was having trouble with anemia, it was found that my B12, which had been stable for years, had crashed. Don't run out and get B12 supplements! That was my issue, but probably not your husband's.
Rituxan weekly x4 is one treatment for hemolytic anemia. Prednisone or IVIG infusions are also possibilities, though it sounds like prednisone has been ruled out at this point. I had rituxan weekly x4 three times when I was first diagnosed (2003). I was very ill at the time, but had no problems with the rituxan - not a single side effect.
In 2015 I got 6 weeks of Gazyva - sort of next generation rituxan. Reading the possible side effects would have scared me to death if I didn't trust my doctor and know that she was involved in the original trials. Again I did not have a single side effect, but I understand how scary reading up on these treatments can be. Even aspirin lists death as a possible side effect. Drug companies have to cover their behinds,
Your husband needs to stay very well hydrated, and to tell his nurses immediately if ANYTHING feels off - an itchy ear - anything! The nurses can stop the infusion, adjust premeds, then restart things at a slower infusion rate to prevent a serious reaction. He will not be bothering them for mentioning something that seems minor. Nurses would rather hear right away if there is any chance of an infusion reaction, than deal with a very sick patient who decided to "gut it out".
Has your husband had his IgG level checked? If it is very low it could explain, in part, the infections. Also look at his absolute lymphocyte count (ALC) and absolute neutrophil count (ANC) - not percents. Low neutrophils could also prevent him from fighting off infections.
Let us know how the rituxan treatments work out. I hope that they help your husband as much as they helped me. They gave me a 10 year remission.
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