Greetings to all my CLL friends! I rarely post questions because I usually find answers to any questions just by reading posts from this forum. Today I do have a question…. I was diagnosed with CLL in 2006. Have had two courses of Rituximab (2006 and again in 2015). Relapsed again in 2022 with added diagnosis of 17q and TP53. I am now on Acalabrutinib and had a “side series” of Obinutuzumab.
Now my question: I understand that when our disease is active, we are considered to have a compromised immune system and we must take precautions to avoid any type exposure to infections of any kind. But what about when we are in remission (blood work looking good) and still on Acalabrutinib, do we STILL have to take precautions and avoid exposure to potential infectious hazards??? Should my husband not go on a trip with his golf buddies just because he is worried he might expose me to an infection upon his return???? (p.s. We both make sure we have all of our vaccinations). Sorry for the long post, but we are both confused about exactly what “compromised immune” really means!
Thank you in advance for any and all wisdom enlightenment you can share!
I’ve dealt with this issue myself for the last 8+ years, 6 in w & w and 2 on Acalabrutinib. Your body is faced with continuous attacks everyday from bacteria, viruses and fungi. People with normal immunity can defend against most of these attacks relatively easily. Our immunity is compromised or weakened by our cancer and then further by the treatment for cancers. Those treatments lower our immunities because they can sometimes destroy both the cancer cells and the cells protecting us.
A couple of examples in my case. A simple staph infection three years ago, something which should have been easily handled by my body’s defences ended up in my blood stream and almost killed me. A person with normal immunity would have had no problems handling the local infection without it getting out of control. Earlier this month, a small skin wound got infected quickly. I immediately sought medical help and a dose of antibiotics stopped it from becoming serious.
So, a compromised immunity means being more watchful, more careful and being prepared. Take normal hygiene steps such as frequent hand washing, wearing masks in public spaces, avoiding crowded indoor spaces, training family and friends to let you know if they have colds, flu, etc. A compromised immunity means watching for signs of infection such as fevers, changes in skin, unusual aches and pains and following up quickly when something is not right.
Unfortunately, Acalabrutinib does lower our immunity so you have to continue being watchful. This doesn’t mean you have to go crazy and obsessive about all this. By all means, your hubby should go golfing with his friends but when he returns, he should be more watchful and self aware as to whether he’s picked something up on his trip and be prepared to act on it (treatment, possible isolation, etc.)
I have shared your concerns for years but it can drive you crazy unless you can relax a bit. Good luck….it’s hard to do.
Thank you so much for your reply! Navigating CLL can be scary and frustrating indeed!!! Good luck to you and wishing you health and happiness for many years!
I'm gonna agree with Vizilo 100%. Have your spouse go on his golf trip, but just ask him to be aware if he's feeling iffy/off when he starts his trip back. If he does, have him sleep in a separate room for a day or two and have him try to keep his space from you til he can be sure he's 100%.
Having CLL means continuing to live and not just continuing to avoid death. That said, we do have to be more careful. So, it's a balance, as is pretty much everything when it comes to CLL!
Great reply. My wife works at local hospital and volunteered for covid triage when covid first hit and before shots were available. Every day she would come and enter back door, disrobe and take shower all to protect me. She still does a lot of things like sterilizing sinks and counters daily. I do all the same things I did before we ever heard of covid, it just came to the forefront during covid. I did all these things both during remission and both treatments. Blessings.