I’ve just completed three cycles of Ibrutinib and commence Ventoclax very soon. I’m also on a prophylactic antibiotic as my immune system is atrocious
im struggling with working out the balance between having some quality of normal life and avoiding infection. I’d love to know your own experiences. Thank you. Martin.
Hi Martin,
I don't know if you've read this pinned post on how CLL can cripple our immune system and what we can do to minigate that impact?
healthunlocked.com/cllsuppo...
The inspiration for that post in part came out of my own struggles to have some quality of 'normal' life during watch and wait.
I can also encouragingly report that treatment has cured my severe neutropenia. Prior to treatment with acalabrutinib (like ibrutinib but with a lower side effect profile), venetoclax and obinutuzumab, I was struggling to achieve a normal neutrophil count even with up to daily G-CSF injections. I was averaging around week long hospital stays annually when needing IV antibiotics to treat febrile neutropenia and would occasionally run fevers for up to a week or more, managed with paracetamol. I haven't needed emergency hospitalisation once during my 5 years remission. I still need weekly subcutaneous immunoglobulin replacement therapy and shingles has left me with a seemingly permanent legacy of postherpetic neuralgia. I proactively mask when mixing with people and keep up to date with vaccinations and boosters (had my 8th COVID-19 shot yesterday), but my quality of life infection wise has definitely improved.
You will probably get more replies if you lock your post, but leaving it unlocked could help someone struggling with a diagnosis of CLL to find our community, particularly if you changed your title to "Avoiding infections during treatment for CLL", say. See healthunlocked.com/cllsuppo...
I hope the rest of your treatment goes well. I found the first month or so of treatment the most challenging. I consider that obinutuzumab helped counter the impact of CLL on my bone marrow. Surprisingly, I sailed through the venetoclax ramp up while being able to reduce my reliance on G-CSF (Zarzio) injections into the skin over my abdomen. I haven't had one of those injections now for four and a half years - and that was after needing over 200 to keep my neutrophil count barely adequate in my final years of watch and wait.
Neil
I guess what we consider "normal life quality" is as individual as our CLL version is. What does the term mean to you ?
I suspect I would settle for going out to the shops, eating out occasionally and perhaps going to the cinema. A short local holiday would be nice. Happy to mask up where people are about.
I go to the shops masked, don't eat out (I don't eat what I didn't cook anyways because I have no control of the ingredients) and watch Netflix at home instead of going to the cinema 😀. Nature is my best friend. No people, I enjoy the silence. This is my new normal I guess. Can you rent a cottage or Airbnb and drive there? On holiday but keeping your distance from crowds.
We use a Chlorox/water mix (1/2 cup to one gallon of water) to sanitize our grocery purchases before bringing them in the house. We do go to restaurants but try to get there mid-afternoon when there are fewer customers. Take out is another option. During the worst of the pandemic We did use order groceries online for the Walmart shopper service and they bring your order to the car.
I wear well-fitted FFP3 respirators (unvalved 3M Auras). Covid-free since the start, but I also live alone and take very few risks. However, I have to attend frequent hospital & GP surgery out-patient visits., and that can be quite gnarly.
I don't mix with unmasked family or anyone else.
All shopping done on-line, groceries delivered, and no eating out at all. You cannot protect yourself in a restaurant whilst you are unmasked to eat, and staff & other customers are also unmasked. If I want a nice meal that I don't have to cook myself, I get a takeaway delivered.
If I want to watch a movie, I'll stream one at home, and some live theatre, ballet, etc, can be streamed live.
I had a long-distance boyfriend for a while, and we used to synch our movies, so we could watch together.
It's not ideal, by any means, but - as you say - it's a balancing act, and you decide what risks you are prepared to live with. Personally, given what a horrible death Covid is, my choice is zero risk., but I don't feel the pain of separation with other people that many others do, so I know it can be really difficult. I hope you find your Happy Place.
I found Dr. Furman's comments specific to COVID informative. Essentially, recommending people rejoin society and live their lives. I'll add I've had COVID 3 times. April 2020 (1st NY wave) it nearly killed me and I was sick for a month + and hospitalized for a week. 2nd time was July 2022, I had a 5 day bad cold and a lingering cough. 3rd time fall 2023 I had about 3 days of sniffles. It's not what it was and with each mutation it tends to become less severe.
Starts at min 45
Its a difficult one and one that many of us struggle with. I risk assess all the time so just now I'm rarely leaving the house. I haven't had a meal inside a restaurant in nearly 5 years and I wear an FFP3 for GP appointments. I don't have the luxury of getting IviG infusions monthly that some on here have reported. I recently discovered that a friend who was on watch and wait has died of an infection. She got her vaccines as advised and lived a 'normal life'. I don't know yet which infection she got but it is a reminder of how vulnerable we are. You have to contrast that with the advice that my own haematology team and other CLL experts give which is "take care but get on and lead a normal life including travel". I don't don't know how you balance both sides of that equation. Covid is a vascualr disease that causes blood clots and long covid and I for one am horrified at the behaviour of the NHS towards infection control in some hospitals currently.
Its a tough decision.
Kate
can I thank you all for your replies and help and advice. It’s so appreciated. Happy Christmas and every wish for a healthy new year. Martin
Bladder infection 
Chest infection
CLL & skin infection
Chest Infection with Blood
