UK CLL Forum, UKCLLFORUM

irritating cough

Topic Made On: Jul 15, 2009 06:33pm
Bridget

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hello

I have just found this forum. I am not the patient. My mother is, she is 79 and lives quite remote on the western isles of scotland.

She has had three treatments of fludarabine annd cyclophospimide recently with fluconozole, co-trimoxozole, allopurinol and various anti nausea things as part of the cycle. During the first cycle she developed a horrible cough. She has had tests for TB, and had ceflaxin and clarithromycin. But she is convinced it is an irritation of the the throught, like a rash on the inside. Does anyone have any experience or knowledge of this and can relate it to any particular drug.? It seems to have eased, but it was very very exausting for weeks and delayed her third cycle.




Replied On: Jul 16, 2009 03:06pm
Robert Cork

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Bridget

Welcome to the forum.

I am afraid that my reply is not going to help much. It's widely reported that a lot of patients who have FC and RFC have unexplained and lingering coughs. It would appear to be one on the side effects of treatment with no known solution to.

Regards

Robert



Replied On: Apr 22, 2012 05:18pm
lartington

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I wonder if any cll patients have haemophyllus influenza?? My husband has had it for two years. It is re-cpnfirmed usually every 28 days with a sputum test. He coughs up nasty green mucus, feels generally unwell and tired, has to sleep a lot. Upon completing the antibiotic the cough usually returns within a week.

I have failed to find out a great deal about it on the internet, or indeed locate any specialist who might have this unpleasant disease on his list of subjects.

About the same time as being infected the first time, we had spent 10 days cleaning our daughter's house following a total re-build as a result of a major house fire. The house being listed, had to be plastered with lime plaster which contained goat hair. The plasterer told us he had been unable to spend more than two hours plastering each day due to the health risks of this product, I have long since given up asking any medics if they think there could be any connection, they think I am batty.

Anybody got any suggestions??he has immunoglobulin infusions every 28 days, unfortunately that does not help the haemophyllis infection........ or perhaps it does, maybe it would be worse if he stopped those. regards Hazel



Replied On: Apr 24, 2012 03:35pm
JckGr1

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Hi
I have just discovered this forum and wonder if anyone can help? My husband received treatment following diagnosis in 2009 and has had some chest infections/colds etc back and forward since. However, since December the cough is getting worse and after a course of antibiotics is still no better. We are awaiting an appointment to hopefully get an xray. The cough is accompanied by a yellow/brown mucus and is often worse during the night. Has anyone experienced similar symptoms? My husbands is also recovering from a subdural haematoma which hospitalised him for 3-4 months in 2010 and suffering from chronic headaches.but I doubt this is related to the cough. Regards J.



Replied On: Apr 25, 2012 08:40am
Robert Cork

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J

A bit more information is required. However:

Frequent infections are common place in CLL patients due to their lowered immunity. Also itís also quite common following treatment, when T cells are depleleted, to have a lingering cough that will not go away.

What was the treatment that your husband received?

A course of antibiotics for a patient with CLL needs to 2 or 3 weeks (due to lower immunity)!

Try and find out your husbandís IgG levels, often these are low and IVIG treatment might be an option if he is below the reference level of 3.

A chest xray is a good starting point, donít delay, push your medical team and get the xray completed.

Regards

Robert



Replied On: May 24, 2015 08:53pm
juliettap

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I wonder if anyone could give us advice. My Dad (73) has CLL. He has undergone two different types of chemo (FCR and Bendamustine - sorry about spelling!), neither or which appear to have had the desired effect. He has just stopped having monthly immunoglobulin as, similarly, it doesn't have any positive effects. He is utterly exhausted - he barely has the energy to get out of his chair - and has had a vicious cough for nearly a year. He hacks away day and night and nothing has worked. He has had x-rays, and sputum tests and all manner of other tests, but... nothing. I can't imagine that he can take much more as he can't sleep or do anything else without hacking away - you can hear mucus but he can't bring anything up. Someone suggested a strong codeine-based cough medicine but even that has had no effect. We are grasping at straws here. It all seems like too much for anyone to bear. If anyone has any advice, or has tried something that gives even the slightest relief, my family and I would be so grateful.



Replied On: May 25, 2015 10:35am
chandaj42

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Hi Juliette. I hope I'm able to help here with my condition and reaction. Briefly, I was diagnosed with CLL in 1992; chemo followed in 2006 (F C) and again in 2010 (F C + offatumamab). Because the chemo knocked out my immune system and I got pneumonia twice in a six month period, I too, needed immunoglobulin infusions. They ceased over the summer of 2014 but I succumbed to a bad infection in August last year. This resulted in my having brochiatectsis and I too have a cough and have to bring up sputum throughout the day. There is a drug (sorry, I've forgotten the name) which definitely helped to bring it all up. Your father's Consultant will surely know what that is - I found it worked very well. I can appreciate how everything has added up in your father's case and the stress must be awful. However, help is at hand, read on....

In October I started on the wonder drug, Ibrutinib. I also now self infuse immunoglobulin at home, once a week, which is a very easy 20 minute process and stops me having to go into the day unit, so someone else can have my spot. However, they have now discovered that taking Ibrutinib NORMALISES the immunoglobulin levels. My cough is much better and, whilst everyone has been falling around me like flies, I have sailed through the past 7 months months health wise.

I do hope these few words provide some comfort and your father comes through ok. Why not speak to his Consultant about Inbrutinib? I know it doesn't work for every case of CLL, but you can at least enquire.

Alan



Replied On: May 25, 2015 01:49pm
kestrel

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Hi Juliette,I know only to well what that damn cough is like being a sufferer too.The name of the drug I think Alan forgot is Carbocisteine.which has helped me.I would also recommend that your father make an appointment with his consultant to ask if it would be possible to be placed on Ibrutinib.I would also recommend a possible appointment with a respiratory consultant.In the meantime tell your father I wish him well.Ibrutinib has now been passed for use via the NHS.Regards.Lee



Replied On: May 26, 2015 09:41am
lartington

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Hi. my husband has a nasty cough (haemophyllus influenze) which is firmly lodged in his lungs, he will always have it, but it is kept under control with Colomycin nebulised twice per day, he coughs an incredible volume of sputum every day, he finds this debilitating, also so much coughing gave him a hernia which he had surgery on three weeks ago. . Another antibiotic which helps his cough is Azythromycin (? spelling) but you really need to get a sputum test carried out to identify the bug and therefore see which antibiotics the bug is sensitive to.



Replied On: Jun 01, 2015 01:20pm
juliettap

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Thank-you all so very much for your posts and your kindness.



Replied On: Jun 21, 2015 09:59pm
juliettap

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Well, I thought it could get no worse. After a CT scan, which FINALLY detected something in his lungs, Dad had a bronchoscopy to try to identify the exact infections that were causing his cough. It seemed like he has just given up... he didn't bother getting undressed - just lay there coughing all night. (My Mum was so weak with exhaustion as she hadn't slept due to his cough, that she couldn't walk and had to be put in a wheelchair just to get her to the waiting room.) His oxygen dropped and he was admitted onto the Respiratory Ward where he continued to cough violently. He has since contracted a Novovirus and is in isolation with no visitors. He has been there for over a week. He won't turn on the TV, get a newspaper, turn on the radio... He's just beaten, it seems, and I don't blame him. It has been brutal. His Consultant hasn't bothered to see him personally for months and months but Dad doesn't want us to make waves or irritate anyone as he is at their mercy, basically. He's a very proud, independent man and I know he is not getting the help that he needs. He lives in the Wiltshire area... Is there a CLL Specialist anyone could recommend?



Replied On: Jun 22, 2015 10:55am
kestrel

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I'm so sorry to hear of your father's ongoing problems,and can only wish him a speedy recovery.I would also like to recommend to you the use of PALS available to patients and their relatives via any hospital to complain and also ask for the patients treatment to be investigated? I myself have used this service and sometimes it can kick action into progress.I understand that this is a frustrating time for all the family and can only suggest you use this frustration into assertive action good luck .Regards Lee



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