Infection after treatment forCLL

[Alma555]

I finished my treatment for CLL a few weeks ago but have ended up in hospital for 3 weeks with a lung infection and temperature spikes that’s keeping me here. Anyone out there had the same experience?

Mary

[lankisterguy Volunteer]

Hi Alma555,

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Unfortunately with CLL, pneumonia is one of our most frequent infections, and can be life threatening.

We have had 688 previous postings that mention pneumonia here: healthunlocked.com/cllsuppo...

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Here is a basic explanation of pneumonia: news-medical.net/health/Vir...

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Here is a very good posting about getting the two vaccinations for pneumonia

healthunlocked.com/cllsuppo...

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Len

[Moggn]

Hi Mary. Yes I had pneumonia a few weeks after FCR infusion treatment finished.. You have my sympathy. I found it just awful (tho i think was really pretty mild) but as usual was salvaged again by my very focussed young haematologist who went way beyond the norm to get advice and an antibiotics etc bundle of treatment that worked in a few days and I was home after week. I had another fever reaction when starting venetoclax and again it was awful , but he again fixed that quickly too. Best wishes to you and many thanks to the health researchers out there. Lester

[Alma555 in reply to Moggn]

no problem but still in hospital, they will not let me out until these spikes in temperature stop.

[Moggn in reply to Alma555]

I’m sorry to hear it’s persisting & hope it settles soon. For interest, are your blood results back to “ok” ? By the end of my FCR mine were all borderline “normal range” then took a few more months improving a bit more. Again, best wishes.

[wiganfan]

Hi Alma555, I got pneumonia when I finished my course of FCR. Intravenous antibiotics soon sorted it out.

Hope you are soon feeling better and enjoy remission as I have.

Ian

[JEEA]

Sadly I have pneumonia right now. I'm still on Watch and Wait but getting nearer to treatment. I have been treated with two strong antibiotics at home, while being monitored daily by Ambulatory Care at my local hospital.

Antibiotics finished and was feeling much better but then yesterday developed a chest pain so back to Ambulatory Care. Not heart. Now waiting for a CT Scan any minute now as I think that they think may be CLL related? Not sure

So interesting to hear and read the links about how often pneumonia occurs for those with CLL. Thank you for posting those Lankisterguy.

Hope that you are much better now Mary. I'm never ill so was quite taken aback to get pneumonia! Don't know how one avoids it?

Eleanor

[SofiaDeo in reply to JEEA]

they might be CLL related in the sense that CLL affects our immune system, weakening it. So we catch things faster, and take longer to recover. It's why I recommend taking skin pictures when things happen to skin, and go to the doc sooner when things happen in other systems that might indicate an infection. Things can overwhelm our system quicker than pre-CLL, and recovery take longer.

Getting good aerobic exercise can help strengthen lungs as well as other body parts, due to better oxygenation and CO2/waste removal. You can use an incentive spirometer at home monthly to monitor your lung function. Or use it if you suspect a lung problem, if there's a noticable change from "your usual" you might suspect a problem. They aren't expensive. Good hygiene (respiratory as well as hands) is super important as well as proper rest and nutrition. We need to avoid stressors, even emotional ones. It's a pain being super cautious, but it is what it is.

[JEEA in reply to SofiaDeo]

Thank you SofiaDeo,

Yes --you are right. I do a lot of aerobic exercise--aqua aerobics 2x per week, a aerobic exercise class and Pilates, so I was feeling pretty fit, so was surprised when this hit me. I certainly will go to the Dr. sooner. Having said that, my GP did listen to my chest on Monday and thought it was clear, but another GP sent me to A and E on Thursday.

I'm rapidly becoming more cautious.

What is a spirometer?

Eleanor

[SofiaDeo in reply to JEEA]

en.wikipedia.org/wiki/Incen...

They aren't very expensive.

walmart.com/ip/AirLife-Volu...

I recommend one to anyone concerned about assessing their lung capacity, especially to strenghten/exercise lungs when bedridden or inactive, unless there are contraindications. I used to play saxophone, and this was recommended to help develop better breath control.

[noeagaman]

Hi Alma, I didn't have pneumonia after FCR five years ago, but had it three times during COVID. It took a long time to get over each of those bouts. Then I had bronchitis that lasted four months. My doctor tried five different antibiotics and nothing helped. Finally they did a lung bronchoscopy and found that that I had a fungus in one lung. They treated that I and I have not been sick since then. That was back in May. They also upped my IVIG dosage and frequency. Luckily, I have not needed hospitalization for any of this. My wife always takes me to the ER early in these bouts of sickness. I am lucky to have someone who pushes me to get care. I guess I am saying not to wait until things get bad.

Chris

[JEEA in reply to noeagaman]

Thank you. You are so right. Important to ask for help!