CLL spreading to lungs?

[Suzimac77]

Hi,

My name is Susie & I’m 53 years old. I had aggressive chemo in ‘13 because I was in so much pain & it really helped me.

I have been sick with bronchitis probably 4x a year & it takes forever to end.

I’m currently recovering from pneumonia (7 weeks in) & I’ve had a serious cough & shortness of breath as a result. I’ve been in a nebulizer 3x a day, 2 different inhalers, & a slew of meds - prednisone, Zithromax & amoxicillin - nothing has changed except that the wheezing has gone.

I saw a pulmonologist who suggested that the CLL could have very possibly travelled to my bronchial tubes/lungs.

I am waiting to get a cat scan to determine this & was wondering if anyone else had ever had this or heard of it?

Please & thank you.

[cllady01 Former Volunteer]

Suzi, Welcome to our CLLSA site for sharing and education regarding our experience with CLL. You are having a most difficult road to walk and there will be others who will have had similar situations to share with you.

First, if you will lock your post--go to the "v" below your post and then choose "edit", and go to bottom to choose to have the post be seen "only in this community". That way your name and information and that of those who answer, will not be on the internet--just on this site.

[lankisterguy Volunteer]

Hi Suzimac,

We CLL patients can be susceptible to lung fungus. You may want to ask if your doctors have tested for Pneumocystis and Aspergillus. They are uncommon for normal immune people but we are immune compromised, like folks with HIV, MS (Multiple Sclerosis), MDS (Myelodysplastic Syndrome) or MM (Multiple Myeloma) .

Len

[MsLockYourPosts Passed Volunteer]

Have your doctors tested your IgG level. If it is very low IVIG infusions can help to boost your immunity. I agree with Len about being tested for fungal infections as well.

As Cllady said, you are likely to get more answers if you lock your post. Many of us are careful about replies that might turn up on Google.

[Ladylin151]

My husband has the SLL form of this disease, he was diagnosed when he was having severe symptoms that started with sinus/cold symptoms. He lost 30lbs very rapidly and was extremely ill. Many tests and a biopsy finally revealed that he had Histoplasmosis, another fungal infection of the lungs. The fungus was intermingled with SLL lymph nodes in his lungs and neither would have been a problem without the other. Once that was cleared (antibiotics can't do it) he has been quite healthy for 3 years and going forward on watch and wait.

[Cllcanada Top Poster CURE Hero]

Have they done a bronchoscope and biopsy..? Sounds like a fungal infection perhaps.

~chris 🇨🇦

[JWalker]

I had a long-term cough that started as bronchitis. The cough did not improve and I started on ibrutinib. Within six weeks I had pneumonia and stopped the ibrutinib, but only after it was discovered on a CT scan. After another two months I had lost 20 pounds and no cause of the pneumonia could be determined.

Two months beyond that and about six months after starting the ibrutinib, I was diagnosed with bronchiectasis which is damaged airways that do not clear themselves of fluid and causes a daily productive cough and can result in severe infections. It is permanent and progressive.

I live with it and manage it daily with lung hygiene therapies.

It is a much more problematic and dangerous for me than CLL.