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!
P
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P-klenclo
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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.
Indeed we have bacteria on our bodies - normally - part of being healthy, not to mention in our gut. Sometimes these bugs will become harmful - Vizolo's experience with Staph for example.
If we are not being plagued with infections from week to week of regular living then its reasonable, I think, to assume one's immune system is fairly good. I get skin punctures from my woodworking hobbies, so far no infections, altho I do look after all wounds - cleanse and disinfect.
To respond to your question, we have CLL, and we will have an impaired immunity for life as a result. Whether in watch and wait, on treatement (which have their own individual effects) or in remission.
The condition of CLL, in any of its phases, is heterogenous, fluid and progressive (in the main). There appears to be no test to evaluate our individual infection risk, I guess thats a reflection of the immense complexity of the immune system. Bit like astrophysics and dark matter. This will be a compromise, embracing quality of life, work commitments, family responsibilities etc all tempered by our own personalities and risk taking inclinations.
My wife has returned to sing in a local choir. She understands that has raised, a bit, the existential risk of infection for me. Compromise, her happiness is also important.
Ironically - the last Covid negative respiratory infection my wife and I enjoyed - I recovered quicker! That sort of was a bit of reassurance for me.
I suspect that "Ob on the side" is unusual with Acal as the main treatment drug, but the Ob being a CD20 antibody may disproportionately lower your white cell counts. How often are your labs done? What were your latest neutrophil and immunoglobulin (IgG, IgA) counts? These numbers might enable someone to give a more considered answer to your question. Though I do agree with Vizilo's central point, that Our immunity is compromised or weakened by our cancer and then further by the treatment for cancers.
Exactly!P-klenclo, Primarily you will have some permanent impacts on your immunity from your CLL, e.g. low anybody levels, that is the IgG and IgA counts, plus a decreased ability to produce more antibodies during and for sometime after the end of your treatment. You will be unlikely to be able to make any antibodies for at least a year after your last obinutuzumab infusion, plus the acalabrutinib will dampen down your ability to make antibodies while you are taking it and for a while afterwards. You need to have some healthy B cells present in your blood to be able to respond to vaccinations and infections by producing antibodies. Until that happens, you won't get as much benefit from learning how to more smartly deal with infections or fake infections (vaccinations) as people without compromised immune systems. You should still get some T cell immunity to help you deal more effectively with infections or fake infections from vaccinations your immune system has seen before, but expect to take longer to overcome them and become more ill with them.
Other respondents have given you good advice on how to manage your risk of infections from your spouse on his return from his trip.
Good morning Neil, as always, thank you for your post. I fear infection wrecking plans but try to avoid exposure. We have a holiday planned in a few weeks and for the two weeks before, I take extra special care. We always wear masks when shopping, we fall in with the doors at supermarkets opening. My friends think that I am being rather silly refusing lunchtime and evening meetings in cafes and pubs, they say that if I am well enough to travel, then I am well enough to meet them. They don't get it,they really don't get it,that I (and Tony) just want to be as fit as possible before we fly. Masks (FFP3) will be worn for the duration of our flight.
It doesn't seem to matter how much I tell them about my challenged immune system, they still come back with 'you have had all your jabs, so you'll be fine '
I had my latest blood tests a couple of weeks ago and thankfully all was good, basically: white cell 8.3 red cell 3.86 Platelets 240 Neutrophils 2.7 Lymphocytes 5.1. Everything else was within normal ranges and my consultant was very happy. I also requested an antibody test, blood was taken for a covid spike protein antibody and this is non reactive. So no antibody response to covid vaccinations. The report says that although not tested, I may have a T-cell response.
After the dreadful confusion we had prior to our last trip, with a mix up about special assistance at the airport, we have had to go through the whole medical 'fit to fly' routine again. Our GP has agreed to complete the form (for a fee of course). To support this my consultant has written a letter which states that my CLL is stable and I am in a partial remission. She clearly states that I am fit to fly. So with everything crossed we shall submit the form and letters this week.
Further to my comments, both my wife and I caught COVID last week despite getting 5 shots, following all hygiene steps and largely isolating from friends and family for three years. We took all recommended precautions and still caught COVID. That’s not the point.
Seven days after a positive test, I’m up on my feet and back to normal (albeit with a bit less get up and go). You know what’s coming up next…….My wife who is strong as an ox, never been sick a day in her life, in her 70’s without requiring a single pill, should be a poster child for uncompromised immunity. Nevertheless, she is still in bed, has turned the corner but obviously has been hit harder by this virus than I have.
The unanswered question for most of us with compromised immunities is how successful our second line of defence, namely our t-cells, will be in helping fight off nasty infections. In my case, it appears that they have stepped up this time.
That is good to know. You're a highly vaccinated CLL patient, in treatment and therefore possibly with a weak antibody defence, who nevertheless had accumulated a strong T-cell defence. This is in accordance with the second phase of the Birmingham University study, published as ncbi.nlm.nih.gov/pmc/articl... NB Supplemental Information for details.
Thank you for the paper. While the complexity of the findings are above my pay grade (I’m a simple retired CA), I understood the part, that even where antibody response is either weak or non existent, the cellular response might compensate. I had no COVID antibodies after 4 vaccinations yet still managed some protection. Encouraging!!
I have been in remission for 18 months after a stage 4 diagnosis in Nov 2020. I am on twice daily acalabrutinib and currently monthly IVIG. I live a full pre covid pre CLL lifestyle, I am 59
Our immunity is always compromised to an extent no matter if we are in W and W, under treatment or in remission. To what extent that is individual. He could go and isolate for a few days after return to keep you safe.
I spoke to my Primary Care Dr this week and asked the same question. She responded with wear an N95 mask to go into a crowded situation that I feel is important to go to. (ie a college basketball game to watch my granddaughter on the dance team) The high school games we usually go to for enjoyment, skip. She said you do have to live your life. I have been fully vaccinated and I am on W & W.
My husband has traveled a few times during the pandemic, once to a Balloon Fiesta with hundreds of thousands of attendees. The Fiesta was outside of course. But he and my son flew there, went out to eat in restaurants, and flew home. He and my son were fine.
I typically don’t go on these trips. I did attend a college basketball game recently. I wore my mask and did not get sick.
I plan to start traveling again myself in the summer. I try to stay active, get enough sleep, and limit my interactions with others inside. We still order groceries, require others doing some inside work from time-to-time to wear masks.
I wash my hands regularly, take care of scrapes or cuts or skin rashes immediately, shower after exercise immediately.
But I am weary of isolation. We see family members when they travel here. I see my family who lives here. I am ready to be a whole person again.
Go for it! I find late spring and early summer (before schools in your area and the travel area are out) as a great time for travel. The sun, weather, and area viral load tend to be at their best, and outdoor activities tend to be perfect for that time of year.
If you're like me (and everyone knows your diagnosis), buy your whole family (and yourself), leukemia Tshirts, so if there's ever anywhere you want to have a little space on vacation or not need to explain yourself for wearing a mask, you're covered. I've bought some from Amazon and some from online Tshirt companies, and they are all nice quality (and a nice security blanket for me)...I have 4-5 for me, and 1 each for them b/c normally it doesn't take more (and I don't mind wearing them:)!
I had a travel hobby before my diagnosis, so I've been very thankful I have been able to get back to it the way I have - some things, I don't plan anymore (the bucket list item of Times Square on New Years is never gonna happen - then again, now that I know what it's like, maybe that's for the best:), but I just find new things to plan. A lot of the fun is in the planning and expectation!
I am planning a 2 to 3 day cycling excursion along the C&O Canal! I always wanted to ride from Cumberland to DC. Don‘t think I can tackle that now but we could manage a couple of 15 mile rides over a few days. It’s fun to plan something again.
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