lung issues following fcr

[dwolden]

Does anyone have experience with lung problems following fcr? My husband completed 6 cycles of fcr last April. Since has been ill three times with lung "infiltrates" and has had chronic cough. It is back again with a severe cough and lungs looking same as when ill earlier. We are seeing a lung specialist but he has not experience with post-chemo lung problems. We would love some information and support.

[bkoffman CLL CURE Hero]

Need to be checked for PCP infection if you weren't on prophylactic meds.

[splashsplash in reply to bkoffman]

What are PCP infections please?

[bkoffman CLL CURE Hero in reply to splashsplash]

Pneumocystis jirovecii. I use PCP because I can never remember how to spell it out. Common and potentially fatal infection in the immune suppressed with cancer or HIV.

[Cllcanada Top Poster CURE Hero in reply to bkoffman]

No wonder people are confused...

Pneumocystis jiroveci pneumonia (PJP), formerly known as Pneumocystis carinii pneumonia (PCP).

Gee I thought it was formerly known as Prince...

[PaulaS Volunteer in reply to Cllcanada]

Thanks for the explanation. Like Splashsplash I was wondering what PCP was, then trying to work out how it stood for Pneumocystis jirovecii.

[Cllcanada Top Poster CURE Hero]

I agree with Brian... FCR can supress the CD4+ T cells and PCP fungal infections can take hold as a secondary, opportunistic, infection...

I had PCP in 2009, way prior to CLL treatment. A cocktail of antibiotics cleared it in two weeks.

I was treated with 12 rounds of chemoimmunotherapy in 2012 and have evperienced no lung issues... touch wood.

Post chemo infiltrations could be anything, but I would look for a doctor who treats HIV/AIDS... the compromised immune system in CLL post FCR and HIV are somewhat similar...

The other thought is were are his neutrophils? There is a condition of late onset neutropenia being seen after the use of rituxan...

~chris

[dwolden in reply to Cllcanada]

Thank you yes doctors are aware of pcp risk. He has had tests over the last week. Neutrophils low but not neutropenia. You are very helpful.

[hanskloss]

I completed 6 rounds of FCR in later November last year and have head some issues with a severe caughing, running nose and sinusitis since late Dec till now. Checked my bloods for CRP levels and they were high clocking in at 100 in January while my neutrofills were very low bordering neutropenia levels of 0.5. Was given antibiotics to clear the bacterial infection and GCSF shots for neutropenia. Since then bacterial infection cleared, neutrofills recovered a little bit but it looks like I still have some moderate viral infections since CRP is now at 19 (norm up to 5). For viruses not meds can be given so you have to let your body fight it. Today I feel I am recovering since have been able to get through 2 nights breathing through my nose.

Would suggest a visit to a doc, and blood work with CRP to check for infections.

Best of luck.

[dwolden in reply to hanskloss]

Thank you very much. We have been working with his primary care doctor and now a lung specialist. He had a bronchoscopy yesterday results Monday. He had blood work last week counts low but stable not quite neutropenic. Also a CT. I appreciate your input, always try to be sure we do all we can.

[ccm47]

I was dx'd in May 09 and on W&W. In Dec that year I got a pneumonia type virus so severe that I was in a coma for 42 days. Hence my right lung is still susceptible to any infection that comes along!. In 2011 we decided UK winters were not for us and so we go to Spain or the south of France. Neither I or my OH have caught even the slightest cold there and only extremely rarely seen anybody with one.

This winter, having had FCR over the summer, which led to severe anaemia, we have remained in the UK whilst I am treated for the latter. In November I had the flu jab and since then have spent 17 days in total, (3 separate admissions,) in hospital with pneumonia. My OH also seems to have caught the bug from me, just not as badly

I am now finally on the mend. My blood has stopped destroying Hbs etc and my cough is lessening by the day. My penultimate, I think, PCP treatment (pentamadine by nebulizer) is today.

Needless to say I'm already planning mentally where to spend next winter outside of the UK.

Best of luck to OP's husband.

[splashsplash]

Before I was dx I had a chronic productive cough and sinusitis for five years. The GP doc treated it as asthma and eventually after I insisted on seeing the chest specialist at the hospital they did a biopsy and found five antibiotics (none of the usual type had been effective) that worked on the infection. The first of these didn't work for me but the second of the five did work and after five years of misery I finally stopped coughing.

Now post FCR last year I have too have been coughing since December and have had four lots of ordinary antibiotics that do work but then after a few days the cough returns. I think I might have to go back to the chest specialist. I also think it may be some sort of allergy and I'm presently testing out the theory starting with alcohol (hoping it's not that!).

[lankisterguy Volunteer]

Don't assume you have a single bacterial disease causing your lung problems, you could have a combination with a virus, bacteria or fungus contributing to the symptoms.

We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications.

Both times my CLL progressed I got a reactivation of a childhood disease that added to my symptoms.

In 2010 I contracted Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time.

In 2012 a reactivation of HHV-6 virus was diagnosed along with progressing CLL. Treatment with an anti viral - Valganciclovir (Valcyte not Valtrex) in October relieved the symptoms.

Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease causing your issues, you could have a combination with a virus, bacteria or fungus contributing to the symptoms.

And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

If you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications. Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

When I had a full round of Prednisone and later Venetoclax, Dr Furman had me taking a prophylactic medicine either Atovaquone or Bactrim ( Trimethoprim/sulfamethoxazole (TMP/SMX), also known as co-trimoxazole, to prevent my contracting Pneumocystis. Wikipedia says: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system

So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.

Len

[dwolden in reply to lankisterguy]

This is new information for us. David actually received his first IVIG infusion about six weeks ago. When he was ill in hospital in August there was testing for all manner of bacteria and fungus. Not sure what the plan is this time, but we have been told the CT doesn't look like bacterial pneumonia. I will address the fungus issue with the pulmonologist Monday. The good news is, David is feeling somewhat better and cough seems to be improving.

[cfgsmith in reply to lankisterguy]

I recently had a reactivation of EBV and it raised red flags for my doctors if my CLL could be transforming to Richters...nothing else seems to match. Do you remember if your lactate dehydrase level increased when you had your reactivation of the whooping cough ?

[nobby00]

hi my husband is having lots of lung problems as well.

[dwolden]

After bronchoscopy cultures showed some bacteria, David is being treated for bacterial pneumonia. He is also improving on his own. Cough is much better. Starts two weeks of antibiotics now and after ANOTHER CT scan. Our lung doctor is good, checked for active lymphoma/leukemia in lungs, thankfully that's not it and no fungus to speak of. So two weeks of antibiotics hope for quick turnaround and so glad he is feeling better on his own. More IVIG in a couple weeks that should help.

Many thanks to all who replied, its so nice.

Dorothy