CLL with Bronchiectasis

[JWalker]

I am curious to know if anyone on this board has both CLL and bronchiectasis. I do and am more concerned about how bronchiectasis will effect my quality of life and my morbidity going forward.

[Ellieoak]

Yes I also have CLL and bronchiectasis. I am taking Imbruvica and Bactrim. And other drugs.

[Fannynorthy]

My husband has CLL, bronchiectasis and Pleural Plaque, spondlytis and swallowing problems too. We do not worry so much about the later problems, more concerned about enormous weight loss again and night sweats. Also skin cancers on head that have had to be removed.

He had FCR 2011 and Rituxamin and Fluradendamine in 2015.

Coming up for another consultant appt and not feeling positive about outcome and perhaps need for more treatment. Initially he said he would not have any more treatment but now have new grandchild on the way so if advised he requires it we will discuss viability of more treatment.

My husband worked in the building trade as a painter and decorator and was in schools in the 60,s with asbestos and we have often wondered about CLL connection and use of paint during that era.

Originally diagnosed in 1998 but was on watch and wait until 2011.

Probably all irrelevant to you but always good to hear that others have similar co-existing problems

Fannynorthy

[Michaeljohn50]

Hi, I was diagnosed with CLL in 2002 and and remain on W&W. Bronchiectasis was diagnosed in 2015, at which point I had had to curtail all strenuous physical exercise because of fits of breathlessness; literally I could not breathe, scary and panic inducing events. These "acute" attacks followed 3 winters of persistent coughs and colds which lasted 6-8 weeks. My GP categorized them as viral and attempted to treat symptoms rather the cause. Eventually my oncologist suggested that I might have bronchiectasis, based on another CLL patient experience and referred me to a colleague who had a particular interest in the disease.

I have relatively mild brochiectasis in one lung which is treated with azithromycin and this has improved the quality of my life dramatically. No more "can't breathe attacks" and I have resumed exercise. The current plan is to continue with azithromycin and review annually.

This is my personal experience and I share it in that individual context. I know that there is at least one other member of the CLL community with bronchiectasis and I believe that his symptoms were different to mine.

Hope that this helps, in some way or other.

Michael

[Donegal]

Yes I also have 2 small patches of bronchiectasis in one lung - don't cause too much trouble though!! Had FCR in 2011 and BR in 2016. Heading for ibrutinib shortly I think. Meanwhile battling a squamous cell problem on face. CLL is responsible for a lot!!

[Penkman]

Hi,

I am 64 years old and have suffered with chest infections all my life and usually end up with one each time I get a cold.

The week before I was due to start FCR treatment last year I developed a cough and I was given antibiotics to fight the infection. My FCR treatment started the following week even though I still had a productive cough but having said that, a sputom sample showed no sign of infection.

This productive cough continued throughout my five courses of FCR and beyond.

Following the FCR treatment, I was given a BMB and CT scan to determine if the treatment had been effective.

The CT scan showed I had bronchiectasis and this was the cause of my persistent cough.

I was referred to a lung specialist earlier this year and a further detailed CT scan of my lungs revealed an area effected in the lower part of one lung.

Although I was slowly starting to recover from the effects of the chemo, I was still feeling very tired all the time and coughing up copious amounts of mucus for most of each morning.

I started back at work on reduced hours just working three mornings a week but found It exhausting and slept most of the afternoons. It was also very embarrassing with the amount of coughing I had to do in order to clear my lungs.

In June this year, I decided I needed to give up work and handed in my notice.

For the previous 12 months, I had felt too tired and breathless to do hardly any physical work and as a result my garden was in a very overgrown state especially a row of conifers at the bottom.

I decided to have a go at trimming them, thinking I felt well enough to have a go just working for about an hour a time. After the first hour, although feeling exhausted, I decided to push on and finish the job. It took about 2.5 hours in total and I slept for the entire afternoon and ended up going to bed early that night.

The following morning, I awoke and felt a new man!

I do not know why this happened but ever since, my coughing has reduced to less than a dozen coughs in the first hour of waking.

I have been able to start cycling again to regain some fitness and although I still feel tired in an afternoon I find the lethargy which has plagued me for the last 12 months has improved dramatically and I can start living a more normal life.

I will never know how long I have had bronchiectasis and whether it was caused as a result of the reduced immunity leading up to and during my treatment for CLL but it may be I have had it for a long time given the frequency of getting lung infections.

Last week, I was visited by a Respiratory Physiotherapist who was excellent and reinforced my own belief that exercise is good for clearing the lungs. I was shown how to do some breathing exercises to help clear mucus and have had a standby supply of antibiotics to keep at home provided. In addition, I have also been provided with an Acapella Mucus Clearance Device but I have not had chance to try it as I only collected it on Friday.

My recommendation to you is try and keep as fit as possible and ask to be referred to a specialist Respiratory Nurse to determine if you need any additional support or resources.

All the best for the future.

[JWalker]

Thank you to everyone who so kindly replied. My story is similar to many of yours. I began ibrutinib after a 6 month bout of cough and congestion for which no cause could be determined. Upon starting ibrutinib, my blood oxygen level dropped and a CT scan detected pneumonia and later a CT scan confirmed bronchiectasis. I stopped ibrutinib after 6 weeks thinking it might have

contributed to the lung problems. My blood oxygen level has still not fully recovered.

I clear my lungs daily with a nebulized saline solution and an acapella. I have a productive cough for several hours then do much better but continue to be short of breath.

I deal with shortness of breath and fatigue from both diseases.

My onc doctor thinks I am soon to restart treatment but I am hesitant to do so after my first experience but my pulmonary doc does not believe there is a causal relations between ibrutinib and bronchiectasis.

[fussybritches]

My husband has both. Every so often he has to have a dose of steroids and antibiotics because of the amount of phlegm on his chest, which has in the past put him in hospital with pneumonia.. He has just started (3 weeks) with Ibrutinib so we don't really know yet whether it will have any effect on the bronchiectasis and cll. We can only hope for the best.

[shoshanaz]

A recent CT scan revealed that I have some bronchiectasis. Mostly it is annoys me with the sound of breathing. I don't think it is related to my CLL, but probably from a lot of chest infections throughout my life. I get a lot of mucus that I have to clear, but as much as possible refrain from cough suppressants as long as a cough is productive. Asthma can also be a component, as it is for me. I find that using a rescue inhaler will often resolve a persistent cough, even if the doctor doesn't hear a definitive wheeze. I'm still in W&W, so not related to any treatment at this point.

[Hidden]

I have been monitoring this web site recently and learned a lot, now it is my time to contribute. Diagnosed with CLL two years ago at age 72, been on W & W since. The CLL was discovered during treatments for series of repetitive lung infections that began in February 2015 and lasted until October 2016.

In May 2016 I was diagnosed with Hypogammaglobulinemia and began monthly Privigen immunoglobulin infusions (IVIGs), augmented by various antibiotics. By October the lung infections cleared and I was diagnosed with Bronchiectasis.

Then, as preventative treatment, I continued use of monthly IVIGs, Azithromycin 500 mg. three times a week, Mucinex Expectorant 1200 mg and daily nebulizers with Albuterole Sufate 2.5 MG/3ML 0.083 and Sodium Chloride 7% to clear excess lung sputum. Without the IVIGs my internal immunoglobulin measure (IgG) drops down to 500s, without the expectorant and nebulizers the excess sputum is more easily infected, and without the antibiotics I have difficulty fighting off the infection. I use an Albuterole inhaler before exercise to deal with shortness of breath.

I have not had a lung infection since October 2016, however starting in January 2017 I began having strong negative drug reactions to my meds. My lungs remained fine and I could function in extremely cold weather but I developed a nasty looking rash that began on the top of my head and slowly rolled downward day after day: it did not hurt or itch, it was just there. After two rashes I was taken off IVIGs and Azithromycin; then had another IVIG and another immediate drug reaction. Bactrim was substituted for the Azrithromycin and my hands, feet and lips swelled up and began to peel. I have been on drug reaction steroids for much of the summer and fall, when clear of the steroids I will try to get into a drug detestation program before the cold weather starts. I carry emergency packs of meds I can tolerate for infections and more steroids for drug reactions.

This is not as bad as it sounds, without the lung infections my activities are not limited. My CLL may be the source of immune system problems but it is indolent so I am focused more on what I can do to prevent infections. It is a problem but every problem has a solution and I will find it.

Owen