Chest infections

[d011y]

Following six rounds of fcr ending in february this year i have been plagued with one chest infection after another and a constant bad cough. I now have tinnitus. Has anyone else had anything similar and is this a normal symptom on cll. I would appreciate your comments.

[jangreen]

I had and continue to have chest potential problems. I have found that prevention is better than cure. Even at the moment when I don't have any infection I still bring up mucus every morning. I have found that taking antibiotics indiscriminately is ineffective. I have found that getting an analysis is the best route. But these tests often take a week to develop and its what do you do in the meantime. So I try to act quickly. I now seem to know when an infection is coming on. Of course some aren't infections but viruses or fungal problems. I do sympathize. For me it's become something I manage rather than cure. I hope this is of some use to you and wish you good luck.

[tedrog in reply to jangreen]

What kind of “analysis”? test?

and what do you for prevention?

[d011y]

Hi and thank you for your comments. Ive been on antibiotics for months now with little difference. I lok foward to better health one day.

[MsLockYourPosts Passed Volunteer in reply to d011y]

Insist on having a culture to determine whether this is bacterial or fungal. Also, have your IgG level checked (simple blood test). It could be that IVIG infusions would help. I was living on antibiotics before my diagnosis, dealing with a doctor who was just writing me off. I later discovered that he knew for a year that my IgG level was 250 (very low) but he didn't want to order IVIG for me because of cost. Angry? Oh, yes. IVIG infusions were a Godsend. I now rarely deal with infections - a handful of allergy related ones that clear up on their own - 12 years and counting!

Pat

[d011y]

Thank you for your response will ckeck it out.

[foolish]

I was admitted to hospital with Pneumonia and Pleurisy 6 weeks ago. I am still suffering pain and soreness on the lower left side of my body which I am informed is a residue of the inflammation of my left lung. Has anyone else experienced this problem?

Foolish

[Barbarann in reply to foolish]

I was admitted through A and E for pneumonia quite recently, after two calls to 111. I had no idea that I was so ill at the point of admission, I had pleurisy though, which was the reason for the calls. I didn't recognise breathlessness as I had been inactive over the winter. I won't do that again, must keep active next winter.

I had a bit of pain left at the point of my six week check-up, but it went soon after that.

Then I had an invitation for a preventative pneumonia vaccination! We CLLers are susceptible.

I hope you feel better soon.

Barbarann.

[70s-80s-overlander]

The key comment is about tinnitus -- which frequently reflects deficiency of zinc, magnesium, B12 -- or "all of the above". Pneumonia incidence and morbidity also correlates with the degree of zinc deficiency. Are you vegetarian? -- as that would be the most common factor behind simultaneous zinc and B12 deficiency. Many chemotherapy regimens induce magnesium deficiency, but I do not have specific data in that regard concerning FCR. Magnesium deficiency would correlate with the presence of shooting pain. [The maximum safe dose of elemental zinc is 50mg/d; this is imporant]

BMC Public Health. 2011 Apr 13;11 Suppl 3:S23.

ncbi.nlm.nih.gov/pubmed/215...

"Preventive zinc supplementation in developing countries: impact on mortality and morbidity due to diarrhea, pneumonia and malaria."

Yakoob MY, Theodoratou E, Jabeen A, Imdad A, Eisele TP, Ferguson J, Jhass A, Rudan I, Campbell H, Black RE, Bhutta ZA.

Am J Otolaryngol. 2015 Mar-Apr;36(2):230-4.

ncbi.nlm.nih.gov/pubmed/255...

"Effects of serum zinc level on tinnitus."

Berkiten G, Kumral TL, Yıldırım G, Salturk Z, Uyar Y, Atar Y

[AussieNeil Partner Administrator in reply to 70s-80s-overlander]

70s-80s-overlander,

Tinnitus can be a very distressing condition, so it would be great if something as simple as a zinc supplement helped. Unfortunately the abstract of your second reference only identifies a correlation between tinnitus and lower zinc levels in older patients "mean age of the zinc-deficient group was 65.41±12.77years". There's no indication in the abstract that they have actually "evaluate(d) the effects of zinc deficiency on tinnitus and hearing loss." per their claim in the abstract, by assessing whether providing a zinc supplement to the 12 zinc deficient patients reduced their tinnitus and improved their hearing. Were you able to gain access to the full paper to see if that was done?

Thanks,

Neil

[70s-80s-overlander in reply to AussieNeil]

There are at least two principles in play here. First, “Occam's razor,” a principle used in science, suggests that “The simplest explanation should be considered when judging the plausibility of a hypothesis”. [This principle was named after the 14th century philosopher William Occam.] That is, a clinician should try to find the simplest unifying diagnosis that explains most of a patient's problems. That diagnosis and the correlated treatment should be considered first, before the clinician tries a less elegant solution. Zinc deficiency correlated to both the patient’s tinnitus (“ringing in the ears”) and the patient’s trend toward an excessive number of infections.

Second, when NO one treatment is known definitively to treat a problem – as is the case with tinnitus – then the clinician is obliged to offer the patient whatever safe approach is known to be available. To quote the gurus of evidence-based medicine: “if no randomized trial has been carried out for our patient's predicament, we must follow the trail to the next best external evidence and work from there.” [Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. “Evidence based medicine: what it is and what it isn't.” Brit Med J. 1996 Jan 13;312(7023):71-2, p.72] Elemental zinc at a dose of not greater than 50mg/day is known to be safe. Elemental magnesium at a dose short of that producing loose bowels is known to be safe. Cyanocobalamin and methylcobalamin, two common forms of B12, are known to be safe at every dose thus far tried by investigators. An excess of caution is advisable when using risky ingredients like those used in cancer chemotherapy; a lesser amount of caution is acceptable when using safer ingredients under medical supervision.

Arda HN, Tuncel U, Akdogan O, Ozluoglu LN. “The role of zinc in the treatment of tinnitus.” Otol Neurotol. 2003 Jan;24(1):86-9. ncbi.nlm.nih.gov/pubmed/125... ; “...Clinically favorable progress was detected in 46.4% of patients given zinc. Although this decrease was not statistically significant, the severity of subjective tinnitus decreased in 82% of the patients receiving zinc. ...”

Cevette MJ, Barrs DM, Patel A, Conroy KP, Sydlowski S, Noble BN, Nelson GA, Stepanek J. “Phase 2 study examining magnesium-dependent tinnitus.” Int Tinnitus J. 2011;16(2):168-73. [a study by the Mayo Clinic] ncbi.nlm.nih.gov/pubmed/222...

Shemesh Z, Attias J, Ornan M, Shapira N, Shahar A. “Vitamin B12 deficiency in patients with chronic-tinnitus and noise-induced hearing loss.” Am J Otolaryngol. 1993 Mar-Apr;14(2):94-9. ncbi.nlm.nih.gov/pubmed/848...

There is NO known treatment for tinnitus that has worked for everyone, but there are several approaches that have worked for some.

The data are poor, but that is not to say that there are no data.

The person who wrote in is suffering –

and both of the named problems may respond to a single approach.

As has been discussed elsewhere, zinc seems to be involved somehow in the role that phosphodiesterase inhibitors play in the treatment of CLL. The exact role of zinc in CLL remains unclear.

[AussieNeil Partner Administrator in reply to 70s-80s-overlander]

Thanks for helpfully expanding on your answer.

Neil

[tedrog in reply to 70s-80s-overlander]

I know a guy takes Klonopin for his Tinnitus.

i am being treated with Dasatinib for CML, highly effective. My CLL is simply being watched.

I have persistent post nasal drip and cough —i’m worried.

I also have, and did before, tinnitus.

I don’t think There is anything the doctors can do. I mean take a chest x-ray? Unless I have a fever or something really bad.

My question is what can I do safely? I’m taking 1000 to 2000 mg of vitamin D per day. And a otc multivitamin.

Perhaps I should take some small amounts of zinc magnesium and B 12?

However I think if I asked my doctor they would say these levels are not low. Therefore they wouldn’t really advise me to take any.

I’m stuck. I need help.

[70s-80s-overlander in reply to tedrog]

Do your research -- perhaps on PubMed.gov -- the world's medical literature (usually in abstract & sometimes in full), courtesy of the US government. Then take copies of the citations you have found to your MDs, to see if they will at least consider what already is in the medical literature. You have to advocate for yourself. Good luck!

[Lenny123]

Cough, chest congestion, chest infections. Certainly familiar. Apart from excellent advice above, would use n95 masks, liberally, in dirty areas, around crowds and so on. Perhaps a HEPA filter indoors. And do change the AC filters in house.

[helenvb]

Hi, be aware that Haemophilus influenza doesn't always show on a sputum culture, my husbands only did after samples taken under bronchoscopy. It seems a proportion of people get this immunity wiped out by FCR and it doesn't respond to the Hib injection being given.

He was sent down the antibiotics (Azithromycin long term daily) and re-immunisation route for 3 miserable years post 6 x FCR. Now after 9 months of IG's he is infection free. It is very expensive, around £2.5k per month for his body weight, but has given him his life back. We had to push to get it especially as he is only 43 now and IG infusions every 28 days will be for life.

[ShariS]

I had a lung infection for 7 of the 12 months following my (6 months) FCR. We didn't treat at first, as I've been hesitant to use antibiotics; I finally gave in & should have used them earlier, in hindsight. Second antibiotic (Levaquin) did it w/14 days tx. I don't feel perfect, but am very leery of developing antibiotic resistance this early in the game. I understand you do so by stopping & starting, not continuing on them -- just personal preference to rely on them as little as possible. I'm still neutropenic, so quite careful day-to-day (public places usually by 6 am & still not doing large crowds, flying, quit teaching a while ago, etc.). Luckily, I work f/t almost exclusively from home, don't have li'l ones, & am an introvert

[sunshine35]

IVIG treatments monthly for the last 8 yrs has kept infections, sinusitis, bronchitis to a minimum. My cough was so bad for a year it caused me to have surgery twice in the year for lesions. Immune gamma globulin anemia was causing the infections. Common in CLL patients. Do you have low IGG levels. Your oncologist can have your levels checked and prescribe treatments. They are very expensive and given through IV at hospital, your insurance should cover the treatments. You still need to be cautious and protect yourself from germs, sick people, etc.

[dwolden]

My husband's experience similar; three lung infections within six months of completing six months of fcr. In hospital twice, lots of tests, lots of antibiotics; since starting IVIG four months ago he has not had infections; also his blood counts are improving, so it is our profound hope his immune system is making a recovery after chemo. He wears a mask when flying and we try to be careful about crowds etc.