CLL is well characterised as a cancer of the immune system, hence CLL specialists recommend keeping up to date with non-live vaccinations healthunlocked.com/cllsuppo... and the use of prophylactic Immunoglobulin Replacement Therapy (IgRT) or antibiotics as appropriate.
Further to the recent post about IgRT vs prophylactic antibiotics, we have this just published large study.
"A retrospective, longitudinal study was conducted among adult patients diagnosed with CLL or NHL. Clinical data from the Massachusetts General Brigham Research Patient Data Registry..
The study population included 17,192 patients (CLL: N=3,960; median age, 68 years;"
I know I am hypogammaglobulinaemic, I was told in 2019. But declined (UK) Ig supplementation unless or until I got 2 serious infections! (What gets classed as serious?) Believing I've now had that, albeit not hospitalised, I need to speak to my Haem team again.
I wonder what other UK NHS CLLers have been told... this is such an important issue for us all... managing infection and the risk thereof.
Neil another thing, I’ve been going to the gym and using the pool allot. Should I be avoiding this? I really enjoy it. The thought of getting an infection from doing this activity is always in the back of my mind.
Thank you Neil, hello everyone, - as some of you know, I live in Iceland. Yes, your guess is correct - now it's 10 C degrees! ❄️🌦
Last year I had to fight to continue to get intravenous antibodies when they were going to save money for the health care system. I was supposed to switch to a low dose of antibiotics instead. 💊
I sure did not like that idea. I asked for a new blood test on IGg and then it turned out that one of the sub-factors (I don't remember which one) was below the limit and therefore a likely cause of my repeated infections. Fortunately, this was a prerequisite for continued IGiv every 4 weeks.
To put it bluntly, I thought it was unthinkable that I should take antibiotics daily, for the rest of my life.
What type of antibiotic are they suggesting? I have CLL and have been in remission for three years. I have asthma which has worsened and I would like to try the prophylactic antibiotics to dry up my chest.
I was recently given the option of having the Ig infusions but since I have not had any serious infections, I opted to save that for later.
However, on vacation, having gone nowhere inside but to the restroom several times on the 6 hour drive (wearing a mask), I got strep. The doctor I saw at the Urgent care was not inclined to give me antibiotics after the usual lecture about how antibiotics don’t help with viral infections. I was so happy to be diagnosed with Strep (whoever says that???) because it could be treated starting that day and I wouldn’t be left with waiting until I got much worse.
Why is it that doctors don’t listen to us? My GP got super excited the first time I saw her because my ALC was 125k. I gave her the results from visiting my CLL Specialist so obviously he was aware of the results. She thought I needed treatment yesterday if possible. I explained that my Hemoglobin was still OK, my platelets were Ok, my spleen was not palatable below my ribs, no night sweats, and I was not unduly fatigued. None of that reassured her.
The doctor at the Urgent Care was aware I was immunocompromised but fully prepared to follow the usual guidelines for treatment.
I definitely need to bring my own antibiotics when traveling!
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