My husband is on Arzerra (Ofatumumab) for CLL ... - CLL Support
My husband is on Arzerra (Ofatumumab) for CLL and he has had 2 treatments. Any suggestions on lethargy and weakness as side effects?
My best advise is when your body says sleep then sleep. Im slightly different as im on FCR but when i get weak periods i rest up and a few days later i seem to bounce back up. If i try to plod on then the weakness just never lifts. A good few chill out days normally does the trick.
The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for unusual childhood diseases, so here it is again.
"Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."
We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...
Both times my CLL progressed I got severe fatigue and a reactivation childhood diseases that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. I also had Whooping Cough (Pertussis). I was treated in 2010 with Rituxan monotherapy and the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights .
In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.
So is it CLL and an opportunistic infection?
Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue.
Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.
And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent infections stopped by that expensive but effective step.
