Chest infection

[d011y]

Constant chest infection. Is this normal

[AussieNeil Administrator]

Hi d011y and welcome! I see that you've only joined today. Why don't you tell us a bit more about yourself so that we can get to know you and give you some more helpful ideas that you can take to your GP?

How long have you had CLL and do you know what stage you are? Have you had any treatment and if so what and when? Have you seen your GP about this chest infection and if so, what tests and medication have you had? How long is constant? My longest respiratory infection with CLL lasted 10 miserable weeks.

While it is highly desirable to avoid getting ill in the first place (and you'll find lots of tips on how to do that if you search the site for discussions on infections), more frequent and longer lasting infections are an unfortunate consequence of living with a suppressed immune system that generally worsens with time and chemotherapy treatment. There are things that can be done to help you recover from some infections, but first you have to find out if it is viral, fungal or bacterial. If you start to get constant infections and your immunoglobulins/antibody levels are low enough (the magic number depends which country you live in), you can temporarily boost your immunity with IVIG infusions, in which thousands of blood donors provide you with their IgG antibodies.

As you can see, it's a bit hard to provide you with helpful information without a bit more background from you .

Neil

[d011y in reply to AussieNeil]

Diagmosed in 2013 had two years wait ans see fcr treatment of six treatments commenced october 2014. Sine february this year i have beeb constantly ill with chest infections. Doctor presctibes antibiotics but side effects are as bad. Im also having a problem with my hair thinning is this normal. I am not that tech savvy but manage to find this site.

[Newdawn Administrator in reply to d011y]

Hi d011y and welcome to the site. Despite not being a techie, you're doing very well.

Obviously only your doctor can give you medical advice but I'm wondering what his view is on the chest infections. Are you said to be in remission since your FCR...was that a 'successful' treatment for you?

Are the chest infections a new thing since your treatment or something you've always been prone to? Presumably your doc has sent you for a chest X-Ray and or lung function tests?

Are you on steroid/cortisone therapy at all (also in some inhalers) because I've heard of a link between that and hair thinning.

Sounds like you need some further investigations if this continues to be a problem and antibiotics aren't helping. Are you still under the care of the Consultant?

Regards,

Newdawn

[AussieNeil Administrator in reply to d011y]

Do you remember if you needed G-CSF injections, perhaps neulasta or neupogen to boost your neutrophils to help you through FCR? FCR treatment can depress your immune system for some years after treatment. If you've had G-CSF injections to overcome neutropenia, you can get a sudden onset of neutropenia, usually some time within the first year of treatment. Either could be behind your reduced immunity or it just be that your doctor isn't taking a culture to find out what bug is causing your infections and hence isn't providing you with the appropriate prescription to clear what you have.

The link below is to a fairly detailed article from nearly five years ago. Look at the table about half way through FCR: Risk of Infection that shows the risk of infection with FCR for each year after treatment. You can see that about 10% of patients are at risk in the first year and about 4% in the second year, with it decreasing after 2 years:

updates.clltopics.org/2515-...

Hair loss is unusual with FCR but can happen. I don't know about subsequently, but perhaps your poor health isn't helping .

Neil

[helenvb]

Hi d011y,

I am the wife of a CLL patient (diagnosed at 38, 42 now) and can give you information on what my husband has experienced.

FCR 4 years ago, 6 sessions, May to Nov 2011. Constant chest infections (15 months) from Jan onwards after return to work. Multiple antibiotics, haematologist support poor, couldn't see beyond a box of amoxicillin (UK NHS), so saw a Thoracic Consultant privately. He discovered immunity to Haemophilus influenzae (bacterial influenza) was gone (Hib vaccine given to children) after completing a bronchoscopy and taking samples. This culture does not always grow from sputum samples, so had not shown up in previous testing. Long term antibiotics followed (azithromycin), the bronchoscopy helped to get things moving outwards and clear the infection also. 3 months of relatively clear chest followed - until the autumn and another 6 months of infection and back to the azithromycin.

Referral to immunology in the meantime to see if Ig response could be 'rebooted' via vaccinations. This did not make any difference.

3.5 years after treatment and being passed between haematology and immunology my husband has begun Ig infusions every 28 days, 7 sessions now. No more chest infections, we can finally have physical contact without him becoming ill. His blood results have improved dramatically and his fatigue massively reduced. His fungal hand condition of 4 years has almost healed and he no longer has bouts of upset stomachs etc.

He should not have been left to suffer for so long, due to a lack of budget, care and basic attention from our health services.

Ig treatment is very expensive as it does take the donation of around 2500 people for each of my husbands treatments, however quality of life is also so important.

I would ask for a referral to a chest specialist.

[lartington in reply to helenvb]

hi, You are the first person I have come across to mention hymophilus influenza. My husband has suffered with it for many years, cause for him was as a result of damaged lung tissue following thromoendartorectomy surgery carried out at Papworth to remove blood clots from his lungs.He had a vinacarva filter fitted to prevent further clots entering his lungs. The haemophilus has established itself in the scar tissue and all the antibiotics you mention failed to clear it. He saw Prof Corris director of cardiothoracic surgery at Freeman in Newcastle (privately) and he prescribed colomycin nebulised twice per day. He has a flutter valve to use prior to nebulising the drug, which induces a hefty cough, he finds this quite debilitating, and has caused a second hernia, for which he is to have surgery next week. Colomycin is normally given to people with cystic fibrosis, but as the normal antibiotics failed for him this was his only option. He had ivig for 4.5 years every 28 days. Last September he was given the wonder drug Ibrutinib as a named patient............ all his bloods have improved greatly, but the downside for him is acute fatigue. he no longer takes ivig ...... most enlarged lymph glands have reduced as per a c.t. scan recently. An ongoing problem following a biopsy in December 2014 for a biopsy on cluster of lumps in his neck has just yesterday shown no sign of tuberculosis or squarmous cell carsenoma which were the two main concerns.

I find every day seems to bring a new problem, I always thought I was prepared for everything, but there are always new issues. Hernia repair next week and a few weeks later a biopsy on a lesion on his nose.

My advice is always seek the best....... research where the centres of excellence are, we use the nhs and fund ourselves, my husband receives excellent healthcare in Harrogate at a new McMillan centre ....... Could not improve on it at all. NHS at its best. I do not belong to the group of people who accept everything they are told, and do not question anything. A little knowledge is such a great help.

I do hope your husband settles into a routine of coping with his haemophilus

it is a most unpleasant problem. very best wishes hw

[MsLockYourPosts Passed Volunteer in reply to lartington]

Has your husband's doctor considered lowering the dose of ibrutinib to two pills a day? Some have found that they continue to do well on a lower dose and that lowering it helps with the fatigue issue.

[lartington in reply to MsLockYourPosts]

yes, he is on 2 per day.

[lankisterguy Volunteer]

d011y - your story is a great example of what happens with doctors that don't know how to deal with immune compromised CLL patients.

I don't know the UK health system, but in the USA it takes a hard working, well informed patient advocate to push, prod and if necessary harass the system and medical professionals to force them to think differently.

In short- if our immune system was working correctly we likely would NOT have CLL- it would have killed the mutant cancer cells immediately. Our bodies don't respond to bacterial, viral or fungal infections consistently, and during Chemo our weakened immune systems get nearly destroyed. So antibiotics may not work at all!

It takes a team of experienced doctors: probably a CLL expert in coordination with an infectious disease expert or a HIV expert to deal with the "off the wall" infections that can impact us. The lung problems could be resistant bacterial, fungal or viral, and sorting that out to find the correct treatment is not done in a 5 minute clinic visit with a Primary Care doc or general hem/onc.

I went through 3 different docs until I found a CLL expert that really looks for the underlying cause of all symptoms and problems, and then refers me to his personal network of other specialists that know how to deal with immune compromised people (whether they are in Chemo, have leukemias or lymphomas or HIV). That makes a world of difference in getting the correct diagnosis and treatment.

Len

[dwolden in reply to lankisterguy]

Thanks Len your reply is very helpful to me and my husband. Poor man HATES going to the doctor but we may need to get another team member on board to help with his recurring lung issues.

[alice111]

My husband has had a continual chest infection for 8 months now...it started after his 3rd round of BR and despite almost continual antibiotics it has not abated . Finally, a swab was taken which showed hymophilus influenza....the GP prescribed Co-Amoxiclav but this hasn't improved the infection, which has given him a terrible , very productive cough. I am finding it so difficult for anyone to really engage with this problem, the Haematologist just shrugs it off and the GP's just prescribe ineffectual antibiotics. Nearly 5 years ago my husband had a lobectomy for early stage lung cancer ...happily, this disease has not reoccured ...however, I assume his lungs are more vulnerable post surgery. I feel very downhearted about the situation ...I asked about IVIG but this was dismissed out of hand .

[lankisterguy Volunteer]

There is another lung issue that is being identified more often among us immune compromised CLL patients

- The recent halting of Idelalisib trials in untreated patients was due to decreased patient survival apparently causes by Pneumocystis

From Wikipedia, the free encyclopedia: Pneumocystis pneumonia

Not to be confused with Pneumococcal pneumonia.

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.

Signs and symptoms[edit]

Signs and symptoms of PCP include fever, non-productive cough (because sputum is too viscous to become productive), shortness of breath (especially on exertion), weight loss, and night sweats. There is usually not a large amount of sputum with PCP unless the patient has an additional bacterial infection. The fungus can invade other visceral organs (such as the liver, spleen, and kidney), but only in a minority of cases.

Pneumothorax is a well-known complication of PCP. An acute history of chest pain with breathlessness and diminished breath sounds is typical of pneumothorax.

Disease course

The risk of PCP increases when CD4 positive T-cell levels are less than 200 cells/μL. In these immunosuppressed individuals the manifestations of the infection are highly variable.[3] The disease attacks the interstitial, fibrous tissue of the lungs, with marked thickening of the alveolar septa and alveoli, leading to significant hypoxia which can be fatal if not treated aggressively. In this situation LDH levels increase and gas exchange is compromised. Oxygen is less able to diffuse into the blood, leading to hypoxia. Hypoxia, along with high arterial carbon dioxide (CO2) levels, stimulates hyper-ventilatory effort, thereby causing dyspnea (breathlessness).

Diagnosis

X-ray of Pneumocystis jirovecii pneumonia. There is increased opacification (whiteness) in the lower lungs on both sides, characteristic of Pneumocystis pneumonia

The diagnosis can be confirmed by the characteristic appearance of the chest x-ray, which shows widespread pulmonary infiltrates, and an arterial oxygen level (PaO2) that is strikingly lower than would be expected from symptoms. Gallium 67 scans are also useful in the diagnosis. They are abnormal in approximately 90% of cases and are often positive before the chest x-ray becomes abnormal. The diagnosis can be definitively confirmed by histological identification of the causative organism in sputum or bronchio-alveolar lavage (lung rinse). Staining with toluidine blue, silver stain, periodic-acid schiff stain, or an immunofluorescence assay will show the characteristic cysts.[4] The cysts resemble crushed ping-pong balls and are present in aggregates of 2 to 8 (and not to be confused with Histoplasma or Cryptococcus, which typically do not form aggregates of spores or cells). A lung biopsy would show thickened alveolar septa with fluffy eosinophilic exudate in the alveoli. Both the thickened septa and the fluffy exudate contribute to dysfunctional diffusion capacity which is characteristic of this pneumonia.

Pneumocystis infection can also be diagnosed by immunofluorescent or histochemical staining of the specimen, and more recently by molecular analysis of polymerase chain reaction products comparing DNA samples. Notably, simple molecular detection of Pneumocystis jirovecii in lung fluids does not mean that a person has Pneumocystis pneumonia or infection by HIV. The fungus appears to be present in healthy individuals in the general population.[5]

Prevention and treatment

In immunocompromised patients, prophylaxis with co-trimoxazole (trimethoprim/sulfamethoxazole),[6] atovaquone, or regular pentamidine inhalations may help prevent PCP.

Antipneumocystic medication is used with concomitant steroids in order to avoid inflammation, which causes an exacerbation of symptoms about four days after treatment begins if steroids are not used. By far the most commonly used medication is trimethoprim/sulfamethoxazole, but some patients are unable to tolerate this treatment due to allergies. Other medications that are used, alone or in combination, include pentamidine, trimetrexate, dapsone, atovaquone, primaquine, pafuramidine maleate (under investigation), and clindamycin. Treatment is usually for a period of about 21 days.

Pentamidine is less often used as its major limitation is the high frequency of side effects. These include acute pancreatic inflammation, kidney failure, liver toxicity, decreased white blood cell count, rash, fever, and low blood sugar.