Hello all, we think that my husband may have just joined your community yesterday (a senior nurse told him he has CLL and put in an urgent referral to haematology so now we are just waiting for an apt and more info) and to be honest this has all come as a shock to us. He's 35. I've done a lot of reading over night and the bits I'm really unsure of and hoping for some guidance on from you all is interacting with others and vaccines.
the nurse told us to avoid areas where my husband can pick up an infection, but we have 2 very young children and no family network, so my question is does that mean now that we avoid soft plays, swimming pools etc.? What about the children bringing viruses home? How to other people manage these risks? What sensible approaches do you take?
Also my daughter is due vaccinations next week- two of them will be live i think, polio and rotavirus- I have seen that people with CLL Should and vaccines and people recently vaccinated, how do other people manage this? Should i put off her vaccinations? Again, what sensible approaches are people making?
thank you all so much for reading and any advice that you can offer
Written by
Nico6
To view profiles and participate in discussions please or .
Nico I am so sorry you and your husband are going through this. On the right under pinned posts you will find some excellent advice on living with CLL including vaccinations your husband needs.
I believe live vaccines can shed for about a week so it might be safer, and to stop you worrying, to delay until your husband has seen a consultant. Ask if he will have a CNS ( clinical nurse specialist ) they are the best people to ask questions of. Join CLL support for help and advise in the U.K.
Just a patient here, but a new CLL diagnosis doesn't necessarily mean your immune system is completely compromised. After my diagnosis last year I had the same concerns, but after they tested my immunogobulins and the IGg was normal the doctor didn't feel significant precautions were warranted. He said, "live your life". Obviously as IGg changes I suspect that recommendation would change too.
Agree, as I was diagnosed in 2020, after not even flu once a year, I had several things happen at once, shingles, pnuemonia, etc and I recovered well. I realized to protect myself but that my immune system was very much still functioning.
Thank so much for your reply, I'm sorry that you were so poorly but really glad that your immune system was still doing a good job ❤️ Thank you for sharing your experience. Can i ask what you now do to protect yourself, as mentioned in your post? What precautions do you take? Thank you
I am 66, retired to put that into perspective, but we have grown children, grandchildren that visit.
I would do alot of outdoor events at 1st (because covid began when I was diagnosed), fear was everywhere. But that has changed.
Have not revealed my diagnosis to family/friends, personal reasons. So, when asking if someone is sick (prior to an event in our home), they think its because of my afib and being paranoid lol. Its known now & people don't mind plus, my wife is immunocomprised, she is careful too. And, the old saying "people who matter won't mind, people who mind don't matter".
Mask if in a place where I need(ed) to, parents in hospital, my own visits to my specialist since it is a large hospital. I still do dental vists etc without mask. Of course there are both sides to masking but I do what makes myself & my wife have peace of mind.
Wash hands frequently, clean light switches, really stuff that reduces germs in general for anyone.
My wife, 54, shops more online for groceries and such.
Did reduce going to every single thing we are invited to. A friend of a friends party etc.
Only big things I stopped was casinos & concerts. I don't trust them and don't miss them. But I am older lol
We still go to pumpkin patches and such lol just wash hands!!
Not everything you should adhere to obviously.
Ask anything and you can chat too if you like. I will have my wife answer too if that helps since she is the care giver.
Thanks so much for sharing this, it's really helpful to hear how others are managing their lives to reduce risks- I think that's what I've been most struggling to get my head around. We thankfully don't go to any big crowded events in general- mainly because of the children and we have no family network to help. I love your saying of people who matter don't mind and people who mind don't matter-I'll remember that. We were much better with infection control during covid and I think our standards have slipped- but it gives me some thoughts of what to get back to. We also love pumpkin patches and maybe that's what my focus needs to be on in the next few weeks while we await answers, more outside events and less indoor activities. I greatly appreciate your time replying, it has been a huge comfort and a big help, thank you
Thank you so much, that's really helpful information and reassuring. I don't know his immunoglobulin results and we are yet to see a Consultant- I guess i need to wait for more information to know how much we need to modify our behaviour and lifestyle, thank you
I'm in the process (I've made 10 pages of notes so far!) and after the first very kind reply to my post, I've also found the pinned posts which are super helpful and I have lot more reading to do. Thank you
Hi Nico, so sorry to hear your husband is awaiting results. If he is diagnosed with CLL, it would be probably helpful to speak to the CNS nurse or his consultant as only they will be able to see his blood results and give advice.I was diagnosed at 39 when I was pregnant with our third child (2019) so to put your mind at ease, I have gone through all children's vaccinations with CLL and I was fine but I did always check with either my CLL consultant or my immunologist. From experience, if he is diagnosed but has no symptoms and feels well otherwise, he will be fine to be around your vaccinated children. Polio is usually not a live vaccine (if you live in the UK). The polio jab is not live, the oral polio vaccine is - it is not used in Europe anymore. Rotavirus is live but I was given the all clear with that one and I never became sick when my children had it. MMR vaccine is a live vaccine but very unlikely to shed and my child was able to have it even when I was in treatment as there was no risk to me. The only vaccine that my immunologist didn't recommend for my children to have, when I was in treatment, was the flu spray. They had the jab instead. Now I'm almost two years after finishing my first treatment, my kids can have the flu spray again with no risk to me. I'm always advised to have my flu jab before they have the flu spray.
Managing infection risk is very individual. Some CLL patients don't get sick a lot and some do. I would advise you to read the pinned posts and to make sure that your husband has all the vaccinations that are recommended for CLL patients as soon as he possibly can once and if diagnosed. It's mainly different pneumonia vaccines, yearly flu jab and covid jab. It is also advisable for other close family members to have regular flu jabs.
I have three small kids and also work as a primary school teacher so it isn't easy to avoid various infections...it was always relatively okish until about a year prior to starting treatment. This was obviously caused by CLL and its effects on my body. You can't stop yourself from getting sick when you have small kids, it's unrealistic, so it is really important to see a doctor when unwell so you can be checked out and given antibiotics etc. Staying on top of hand hygiene, eating a healthy and varied diet, taking shoes off and changing into "home" clothes once you are at home from work or school - that's all really helpful. When you have CLL, it's never too early or too silly to see a doctor early when worried.
I had my first treatment in 2022-23 (Obinutuzumab and Venetoclax) and although I'm still on prophylactic antibiotics to manage my infection risk, I have been doing well. I do pick up gastroenteritis quite frequently from my own kids - with three of them in the house, they bring it into our household in turns and last year I had it three times...not nice but I don't complain - my IgA is low and my immunologist thinks that's a factor. I had the flu but since I was jabbed, I was lucky and didn't become too ill. I had covid this year and was given antivirals and it helped...so it is also important to be informed what one can do when they become sick.
If your husband is diagnosed, ask his CLL doctor to run a blood test to check his immunoglobulins - it is a simple blood test and it would give him an idea of what the state of his immune system is like.
It is extremely stressful to go through the initial blood tests and a diagnosis but I would say to stay focused on "now" don't think about what ifs until you know if he has CLL. This is an amazing group full of knowledgeable and kind people, you found the right place to be if you need further advice. Wishing your family all the best.
Thank you so so much for your time replying to my post, you've honestly been such a fantastic help and really helped to put my mind more at ease about the children and infections- thank you. I'm guessing that as a primary school teacher and mum of 3 that you're around bugs all the time but I'm wishing you a big free rest of winter. Thank you so much
Well wishes to you and your husband. I know it is a very scarey time and that means for you as caregiver also. You are in the right place and time and answers will assist with your peace of mind. All will be well! SJ
Thank you so much- I can't tell you how grateful I am for people taking the time to read and respond, so little info was given to us yesterday that I think it made us even more nervous but hearing from people experiencing it is so helpful
Of course! You are in the right place and just try not to google too much, its an awful rabbit hole. As you read here, you will see that there is a range and individuality to CLL & it is a chronic condition that is what is important to remember. It's so hard to be patient with tests and results etc. But there will be answers and solutions!
But to not protect the child, to protect its father is not rational. Careful study of the issue, with input from medical professionals, and proper planning is required.
Many, if not most, matters in life are negotiable. One's goal should be to avoid as many zero sum situations. Avoid dichotomy with choices, embrace it when searching for facts.
It's very difficult to absorb and questions and assistance are essential. Not being rude but judgement is not needed right now. As you stated, your opinion but it came through a bit judgemental, text is difficult to decipher though. Reality is reality and you think clearly...but newly diagnosed are rough waters~
One is a child the other is an adult man. The healthy child needs to stay that way. The adult man who may be sick needs to protect himself, but not at the cost of his own child. I'm sure with some thoughtful planning the parents can keep the two separated enough for a week.
My tact being mistaken for being is judgmental is in error. In simple terms, ask the doctor how best to mitigate the two from intermingling for the appropriate time span. Probably shouldn't handle the germier aspects of child care for that period. Plenty of hand washing, disinfecting surfaces, masks to protect inhalation of viral shedding from tiny sneezes, etc. as well.
My wife leaves 3 times a year, and she puts up at a hotel by herself after her trip if after two days, not even a hint of coming down with something, she comes home and we do those very things for the next 2-4 days. Is it inconvenient, sure, is it better than wiping us both out SURE.
Please don't mistake my civility as being anything more than paying respect to the worrying mother with the worried husband. I am not a stranger to the everyday planning it takes to avoid people who don't understand or care.
Thank you for your opinion, I agree with your logic but as yet I do not understand the risks or precautions and reading that people with CLL shouldn't be around people who've had live vaccines, especially when we have vaccines due, felt scary. I was hoping that the community would either reassure me or provide support by sharing their approaches or work arounds that have worked for them in similar circumstances- as a poster above has. Thanks
I am with you (spark plug), who is actually more vulnerable at the moment? Young children / baby with no immune system or an adult with a mature immune system, recent diagnosis and stage 0? Take medical advice, could your husband stay with friends for a week or so post children’s vaccination (if there IS any risk)?
Your husband needs to accelerate his own vaccinations, take reasonable precautions according to his own values and priorities (mask/no mask, crowds/no crowds etc). Some people in this forum continue to act as if we were in the height of covid pandemic - no visitors no travel clean shopping etc. Their choice of course but others just continue life as normal with a few extra safeguards. Being in or near treatment changes things but stage O with full vaccination, for me not so much. Decisions are both personal to risk and context.
I do question the dx however- by a nurse? It has to be a consultant and based on certain tests. Maybe she has only said she ‘suspects’.
Just to address the dx/nurse part, in usa here, same type of nurse called us from a (very well known hospital) with the news prior to having a specialist.
Hi Nico, fellow mom of little guys here. I’m 45 and was just diagnosed not quite 2 months ago, however, it’s very likely I’ve had this for some time. I can say I was rarely sick, had COVID at least once and didn’t even lay down, was very much surrounded by germs at work and home and my immune system held. Even if he has a confirmed diagnosis, highly likely nothing has really changed in his immune system. I think it’s great you’re looking for guidance and I can totally sympathize with what you and your husband are feeling with the unknown, which no body likes. This is an amazing group of people at various stages in their respective journeys and are great solace. You’re going to find that day by day it gets better.
Thank you so much for taking the time to respond and for sharing your experience. Can I ask, in the past couple of months since diagnosis have you changed your lifestyle/activities to avoid infections/viruses? We are considering that he may also have had it for some time, he first went to the doctors with swollen lymph nodes over 18 months ago, now he has several large lumps in his neck, but with no real test results and not having seen a consultant we really are just guessing at the moment. Thanks so much for taking the time to reply
For sure. I haven’t changed anything. I still did all the Christmas parties, work functions, I traveled after Christmas and still do my normal shopping and going out to eat with the family. I checked with a few Docs. on the vaccinations and they said Flu, COVID, and pneumonia, which I had all three in Oct. The other advisement was to stay on top of my other checkups like, for me, my well-woman visit, mammograms, and I see my Dermatologist every 6 months. The Doc. did recommend a colonoscopy every 5 years instead of every 10 (not excited about that recommendation). I am a little more aware if someone near me is sneezing or coughing or displaying sick symptoms and I just move a little further away or stay out of their immediate space. I love hand sanitizer (always have) and take vitamins, but that’s it. The numbers really tell the story and although if it is CLL, your immune system numbers can still be on par to protect you from the day-to-day germ/virus encounters. We are actually taking the boys to Disney World in the spring and my Oncologist said, “good, you should go.” Just for some extra context 😊
That's really helpful and so great to hear about Disney World, I hope that you have the most fantastic time! It sounds like you're still very much living life to the full and that's really reassuring to hear 😊
HiI was diagnosed in November 2020 during second lock down., stage 4, straight to a 2 unit transfusion and O+I , at the age of 56. I was in uMRD with 240.days now on alcalibrutinib twice a day. At diagnosis my youngest 2 children were 3 and 18 months, my older kids are in mid to late 20's. The kids had all their vaccines and also got them to have chicken pox vaccine too. They gave regular non live flu vaccine every year.
We live a completely normal pre CLL and Pre Covid lifestyle.... I am a full time dad to the kids who are now 7 and 5. I have monthly bloods and they are stable, I get top up IVIG when my IgG drops and usually a preemptive top up pre winter. I keep GCSF in the fridge at home to use if my platelets drop.
I have one SCC removed from my face 2 yrs ago and apart from that and 6 covid infections I have been fit and well.
I take a lot of vitamins , supplements, red wine , gin ,beer and plenty of Red meat.
I know everyone has a different approach, but view is live life to the max... I plan to see my youngest graduate from University in 2044.
this filled my heart with joy this morning, thank you for sharing your story and positivity ❤️ we still know so little with not yet seeing a consultant and only being told about this Thursday- to be honest, due to my ignorance, prior to Thursday I had never even heard of CLL. We just had to phone NHS 24 this morning as we already think that he has an infection and the doctor over the phone gave him his blood results from Thursday and although he didn't give much information he said that his white blood cell count was now at 23.0, an increase of 5.0 since last week- it all feels so scary, especially without all the information and numbers that I see everyone else talking about. Your post though really helped, I hope that over time we can come to adopt a similar attitude and outlook 🤞🏼❤️
first of all realise that CLL is slow developing and he will be around for many years. Macmillan Nursing has lots of stuff to read he may not have any treatment for several years. Depending on advice from a good haematologist he should stay out of the sun and avoid crowded situations with a mask. Should get leaflets via haematologist- where are you located in UK?
Sorry to hear about the diagnosis. It's a shock and will take time to adjust. I was diagnosed at a well person checkup 26 years ago. At the time I was working as a paramedic in a busy metro ambulance service, exposed to many germs and didn't catch anything. Night shifts became a challenge so I retired and did substitute teaching at a primary school for a while... still staying healthy. Even now, with what is in theory a compromised immune system, I feel good and am seldom sick. My best advise is take each day at a time, eat carefully, exercise as much as possible and don't worry about the small stuff.
Sorry to hear about possible CLL diagnosis. I would wait for actual confirmation of CLL diagnosis, not knowing how CLL was diagnosed. M-m-m-m, small children going to be more main issue with infections and etc. I would start by teaching children some health measures like washing hands frequently, not shearing spoons, food or drinks. I ask visitors not to stop if they have colds, flu and etc., hard to do that with children, 😊 On the plus side I have had very aggressive CLL for 8 years, with only two colds, shingles and one cold sore, so blessings to you.
Thank you so much for sharing your experience and advice. I have done a little lesson on germs today and explained some new cleaning/approaches we will be taking at home (based on some other very sensible suggestions from the group) so this was really lovely to then read that I'm hopefully on the right track. Sending the warmest wishes for keeping well, thanks for replying
good morning and sorry about your predicament. I have all the empathy in the world for you.
anyone who has CLL should stay away from anyone who received a live vaccine for at least two weeks. that means not being in the same room with, hugging, or having close contact with that person. Also
It also means wearing an N 95 mask and staying away from people that are ill.
In my early years, my widow daughter and granddaughter lived with usand if anyone were sick, we would not be in the same room together at the same time. Also make sure was great ventilation.
Do you know what the labs were that led your Nurse to the?
for example
white blood cell count
absolute lymphocyte count.
platelet count
hemoglobin
also did they do something like
Flow Cytometry, which is the test that actually makes the diagnosis?
Thanks so much for this, this was exactly my concern with the live vaccines. I'm so grateful to you sharing your experience of how you managed infections with young children at home.
I'm afraid that I don't have answers to most of your questions as we haven't seen a consultant yet (an urgent referral was made on Thursday), but I know that it was white blood cell count that they are concerned with- my husband had a lump last January (2024) and had blood tests then where the white blood cell count was elevated, he was supposed to receive an ultrasound referral and another blood test. Anyway, neither of these things happened (never received apts) but as the GP had basically said it was nothing and not to be concerned we just continued on not worrying. Then in August I sent him back as lump had grown, again told not to worry, bloods done and told anaemic but given iron and not to worry, we were also assured that referrals for ultrasound had been made (though still never received). Then start January 25 there are several larger lumps appeared and went back to GP who did bloods and said white blood cell count very high (18) and to redo bloods in a week. Then out of hours doc rang saying that redone bloods were higher and now up at 25 (raising 7 in a week) and that he should come see the nurse. Nurse then informed him that it was blood cancer, put in urgent referral for haematology and sent him for an Xray- this was on Thursday. Nurse said to avoid infections and people who are unwell. Apart from that we know nothing and are just waiting until next week for more information and to see a consultant. It has all felt a little surreal but my head just started thinking how do we avoid infections with children and how do we manage our littlests vaccinations, so thought I would ask here for people's advice and experience so that I could try and get my head around it a little more and hopefully be able to learn from others approaches.
Thanks so much for replying and your care and advice
Hi Nico6, I know many here can relate to the anxiety and fear you both are feeling. I’m sorry; the beginning is really scary. Good you are gathering info. I’d also suggest the CLL Society-there’s some great info there.
Though I’m in the US, and healthcare works quite differently here, I think we all share the same issues. I can at least speak to some of the worries about immunity which has been my biggest focus of worry since my dx 10+ years ago when I was 55. I am an RN specializing in Oncology and was working in a cancer infusion center when I started getting every infection going around. Eventually that led to my early retirement as my patients were immunocompromised and calling out sick was a burden on my co-worker nurses. I did not require treatment until 3 years ago; I am on Calquence now, (a daily oral pill) which I tolerate mostly well. I’ve always been extremely careful about not getting sick. Then Covid sent me indoors for 3 years. At this point I believe that my masking, (which I do religiously) is the best way I protect myself. And excellent handwashing, and monitoring where I go, who I’m with, etc. That goes for my partner too, as she is my caregiver. All of my wonderful friends willingly test before we gather indoors. I don’t go to restaurants or anywhere I’d want to eat or drink without my mask. My immunoglobulin levels have dropped quite a bit so I now get IV Ig which helps boost my immune system. I stay on top of all vaccinations. All of this has kept me mostly healthy- and without Covid! I agree with the comment to wait and see what the work-up reveals, but also to hold off on the live vaccines, unless your husband is willing to quarantine for a bit. And always remember that protecting him requires you and the kids to be very careful. Masks (n95’s) are the most reliable way to do that. And handwashing a LOT! The advice to go out and live your life is great, but there are caveats. One can never know how much immunity they have, and we’re all different. I always error on the side of caution, especially since you gave little ones who are mini Petri dishes!
Good luck to you both, and keep posting here. There are some amazing knowledgeable fellow travelers on this site. Blessings to you and yours, and keep doing your own research on reputable sites. More and better treatments are coming down the pipeline every day, so never give up hope!❤️
Thank you so much for your reply, your advice is really helpful and I'm very grateful for you sharing how you keep yourself safe- hearing the measures that others are taking helps us to know the best approaches to be putting in place and at what points on the journey different things might be necessary. We will be trying to keep activities outdoors and away from others for now until we know more information. I'm really grateful for your advice regarding masks and I think that ours from covid need upgrading! Thank you
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Antibodies and vaccines 
Compromised Immunity: So What Does That Really Mean?
CLL Meets COVID Vaccines/ Dr. Brian Koffman's take
Survey on CLL with Allergies 
