CLL in treatment and possible long Covid and managing isolation

[keikikumu]

My 74 year old husband has CLL and is on treatment consisting of Obinutuzumab infusions (just completed) and Venetoclax. He got Covid for the second time in January 2023, took Paxlovid, and it resolved without too much complication. He then had the "Paxlovid rebound." He recovered from that pretty well, but then began having low grade fevers every day, cough and fatigue. His oncologist then took him off of the Venetoclax as he (oncologist) thought that may be the cause of the low grade fevers, cough and fatigue. Weeks went by and the symptoms continued. So...it wasn't the Venetoclax? So the oncologist referred him for a CT scan of the lungs and an appointment with a pulmonologist. Did that. CT scan showed "white areas" of ground glass attenuation and a "mass" in the lungs, so pulmonologist ordered a bronchoscopy during which he took five biopsies. All came back with nothing serious - just some 'scarring.' My husband's symptoms have continued and have worsened a bit with the Albuterol inhaler that the pulmonologist ordered for him. He finds himself more short of breath now, and the cough and fevers are still happening too. The pulmonologist set up a return visit for him in August and said he would order a lung function test. We have not heard about the lung function test date yet. My husband is now convinced (and pulmonologist agreed that it could be) that he has long Covid. He's quite depressed about it. In addition, we have been completely isolating (as in 2020!) since March when his symptoms started post Covid. We see our adult kids and grandkids in the driveway, masked, for 15 minutes sometimes but that's all. How do we manage this?? Any thoughts appreciated, sorry for the long complain-y diatribe!

[Poodle2]

I'm really sorry you are going through this, especially your husband. Long infections that drag are absolutely awful, they really take the enjoyment of life out of you. I think he needs swabs and they need to establish if there is any secondary infection going on. I'm surprised they didn't prescribe him antibiotics? Fevers are definitely a sign of an infection. Did they check his CRP value? Anything above 10 would be pointing towards an active infection. I had long covid and I didn't have fevers unless I had an active infection going on. I also needed several courses of antibiotics to clear the secondary infection that developed because of covid. I think he really needs antibiotics and they need to figure out what's going on. Afterwards he could discuss a regular dose of prophylactic antibiotics. Really don't think he should just continue getting on with his life with the fevers. You do not want it to escalate further, is he still on V? Have they checked his neutrophils? I'm on V and had a period of an infection coming back over the course of 2 months. Had 3 courses of antibiotics. I had very low neutrophils during that time. My consultant increased my GCSF injections dose to boost my neutrophils and since then I have been doing OK. Worth discussing this with his CLL consultant and possibly with an immunologist. Hope he starts feeling better, it must be terribly isolating, sending you positive vibes and hugs. Petra

[keikikumu in reply to Poodle2]

Thank you, Petra. No, his oncologist stopped the V when my husband reported the cough, fatigue and fevers (fevers for 2 months, daily). The doctor told us that V can cause those three symptoms. So he's been off V since April 4th. Thank goodness his WBC has not risen much because of being off it. He has also just finished the O infusions at the hospital (as of a month ago). We see the oncologist again tomorrow and will see if he can start V again since it wasn't the cause of his symptoms, apparently. His neutrophils are fine. His pulmonologist (who did the bronchoscopy and biopsies a week ago and found nothing concerning, except some scarring), has ordered a lung function test. We are waiting to get a date for that. I've always thought that a fever, even low grade for a period of time can indicate infection, but apparently no doctor of his believes that so far, especially after the biopsies and CT scan that he had. So what is it then? No idea, so we are left with that it may be long Covid. So hard not to have a firm diagnosis! Again, thank you for your time in replying. Hope that your treatment continues to go well. Sounds like you're getting excellent care.

[mdsp7]

For what it is worth, this article says that quite a lot of people who have had covid pneumonia have ground glass-like lung opacities at 3 months.

ncbi.nlm.nih.gov/pmc/articl...

I hope your husband will rest and find reasons to be hopeful! Take care of yourselves, it's not easy to be isolated for so long. I wish you both well!

[keikikumu in reply to mdsp7]

Thank you! Yes, it looks like a respectable article and we will read it. We are still trying to get an appointment for a lung function test, which besides the steroid inhalers, are the only things the pulmonologist has ordered so far after the CT and bronchoscopy/biopsies showed only "immune compromised pneumonia." Things seem to be moving slowly, which is irritating.

[keikikumu in reply to mdsp7]

Yes, have been doing some research online and I do see ground glass opacity is very common. Another term that I'd never heard of and now am avidly searching for it online every day, ha. "Things we never thought we'd be doing," right? Thank you for your reply and for the informative ncbi article.

[Lilac45]

I’m sorry to hear your husband is struggling post covid. My husband had a similar response to covid although this was pre paxlovid and he also had pulmonary embolisms. Over time following recovery the lungs deteriorated and it turned out the mass and opacities in his lung were made up of CLL which had infiltrated the lung . Identifying the CLL was incredibly difficult and it wasn’t until he had vats surgery (12 months later) that the CLL infiltration was identified. Biopsies and scans didn’t show CLL. The mechanism for this manifestation of CLL has not been identified. This may not be the case for your husband but so much is unknown about the mechanisms in covid and how it interacts with CLL that it might be worth suggesting. My husband was on a very precarious path until he was put on Acalabrutinib. This has changed his trajectory. V&O didn’t work for him. The damage to his lungs has remained but overall function has improved. Just thought it might be worth raising with his consultant as a possible response to covid.

Hope things improve soon!

[keikikumu in reply to Lilac45]

Hi, wow, that's quite a story. It drives home the notion that so much is not yet known about cancer and Covid. My husband's biopsies showed some white blood cells present but not in large numbers, and were more neutrophils than lymphocytes. His neutrophil count has been normal recently as well. He was also on Acalabrutinib first (before V and O) but that stopped working for him; hence, the V+O. So...on we go. Thank you so much for your input; every new bit of information is so helpful! Hoping that your husband continues on a good recovery path.

[Packrat]

Sounds almost exactly what I just went through! Had covid in December, Paxlovid, rebound, finally neg January 11. Then the cough began, on and off again low fever, sometimes night sweat. Finally in Feb saw my pc, got antibiotics, 3 rounds of different antibiotics later no change. Was going to have another antibiotic when my hematologist said no, ordered chest ct, appointment with pulmonologist, and scheduled IVIG as I have had low IGG for sometime. By now it's late March/early April. CT showed the ground glass opacities, lung function was fine, cough was getting better gradually on it's own. Had the IVIG, 2 days later I was feeling much better, less coughing, no fevers. All was going great, then last week I tested pos. for covid again! Grrrr! Got Paxlovid right away, had a very mild case, hopefully no rebound, 🤞but no cough. It's been a long, frustrating 5 months. I hope it's finally over. Will be continuing the IVIG for awhile. Also forgot to mention I am also on Venetoclax and only came off it for the 5 days of Paxlovid.

[MGCLL]

I'm on watch and wait with very elevated ALC +100K. I contracted Covid in mid-March and took Paxlovid. Went through the rebound and finally tested negative after 21 days. Then had the lingering cough, nasal drip, hoarse voice. No fever. Slowly there was some improvement, but still could not shake it after another month. Finally, I tried using castor oil and have almost cleared all my symptoms after a few days. I applied the oil on my face over the sinus areas and put a few drops in each nostril each night. I am not necessarily recommending this for everyone, but it has made a huge difference for me. All the best!!

[keikikumu in reply to MGCLL]

Castor oil! Hmm..might be worth a try. I'm reading now about all kinds of things that may help long Covid, the Mediterranean diet being one. We already pretty much eat that way as it is, so it was good to know we're doing at least some of the right things! Thank you for your reply, and I hope that your recovery continues on a good path!

[beanlake14]

OMG You have no idea how much your story and all the replies have helped me. I had mild covid in January. About a week later I developed a horrible cough. My regular GP told me to take Mucinex as if that would help the fact that I was throwing up phlegm daily. Another trip and same advice. I emailed my oncologist who gave me Augmentin; that helped just a bit as I continued to cough 24/7 til I threw up. I had a low grade fever for five days. Finally, I had a CT scan where ground glass opacities were discovered with more new nodules. A bronchoscopy followed where it was discovered I have chronic inflammation and multiple mucus plugs. I then went to a young pulmonologist who said it must have been bacterial pneumonia; his superior believed it was a result of covid, but he did not. So, the article that mdsp7 posted just confirms what I have always believed. I have a repeat scan in June, am still coughing and just don't know why I am not being treated. At any rate, thank you so much. I love this forum and now know I am not completely insane.

[keikikumu in reply to beanlake14]

Hi! Yours was the first reply I read this morning and you have no idea how much your story has made me feel better, as in "we are not the only ones." I'm sorry you're still coughing and "have no idea why you're not being treated." SAME! People say "the doctors have not learned enough about long Covid," but that doesn't help us, does it? So we are left to blindly comb the internet for reasonable theories and suggest them to our doctors, who usually negate them in some way, even though they don't know any more than we do! So frustrating. Here's hoping that you come across some good information soon. With you in spirit...