I completed FCR in January and now enjoying what I hope will be a long remission. Bone marrow test had no detectable CLL and my doctor has said this result is the best possible outcome of treatment.
My health has been good since treatment but at the beginning of June I caught a nasty cold/infection and although the worst of it cleared up I had a really nasty cough which gradually reduced over time but never completely cleared up. It has now been over 5 months. I have been back to Haematology several times. They prescribed antibiotics as did my gp and neither worked. I have had a chest x Ray, nothing, but still a cough which is mainly in the morning. I don’t feel Ill and have no fever etc but the cough is annoying. Haematology gave me acid reflux tablets (it’s not that) and the gp gave me nose spray in case it’s a sinus problem (not tried that yet so maybe).
I just wondered if anyone else has had something like this post FCR? Haematology said the immune system can take up to 12 months to recover and not worried but I want rid of this annoying cold.
Thanks
Ian
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Eebie1234
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I had FCR and finished over 2 years ago in remission.
You seem to be making all efforts to keep medics informed about your health, so good.
During my 2 years I’ve had colds that take ages to develop and ages to go and the response from the GP was everything will take longer now because of my immune system.
However, it is hard to decide when to live with the symptoms and when to get help. When a cold is lingering I use my thermometer to check temperatures regularly and if the trend is up and up I seek advice.
So watch and wait is not only the clinic appointments but what we have to do at home.
I had sinus problems post FCR (treatment ended a year ago). My major symptom was deafness in one ear, but I also had frequent sore throats and a minor cough too. I was given Fluticasone furoate nasal spray and a seawater nasal wash to help with the deafness. That solved the ear problem, but the sore throats (not every day) persisted. I have used Gaviscon from time to time (the UK version without aluminium) and that has helped with the sore throats too so I think I must have acid reflux, but it has not been diagnosed as such. It is made worse by drinking wine 😒 so I've cut down drastically, but I'll survive!
Have they performed a culture? You really should be seen by an ENT doc. I recently had a post treatment cough... that turned into invasive aspergillosis a fungal infection , that will now live in my lungs for the rest of my life...
One side effect that lingers in FCR, is it can effect mucous production of immnulobulin A, which coats the respiratory and gastric systems from nose tip to the rectum...
5 months is FAR too long... you need some movement on this. Fastest route would be a GP referral to an ear, nose and throat doctor... Tell your hemetologist to check your serium immunoglobulin levels next visit... as well, you may be low on IgG and that can be supplemented with IVIG infusions, and while it does not replace IgA levels, it can certainly help, if this cough is serial bacterial infections...
Yes actually they did a culture early on at haematology. When I went to see my GP last week I was expecting an ENT referral but he just listened to my chest again and prescribed a nasal spray. I will try that first then push for ENT.
I have a persistent cough post-FCR. The consultant arranged for a swab, and it turns out to be parainfluenza type 3. This is now being treated with the appropriate antibiotic. The key seems to be in identifying accurately what is causing the problem. I hope you recover soon.
Adding to Chris/Cllcanada's suggestion and your comment about a culture. Please ask the GP if the culture also included testing for fungus. Many docs will run a bacterial culture but not a fungal culture.
Thanks Len, excellent point.. as some know my lungs are fungus filled and it is very hard to treat. GPs are not the sharpest knives in the drawer in CLL and fungal infections are quite rare in general, but not in HIV or CLL.
I managed to get an infecious diseases doctor... whos primary patient load over the past 20 years have been HIV patients and this guy has an extraordinary insight into immunocompromised patients.
As a final comment, we need a very rapid assessment of all illness in CLL, the days of waiting to see if something 'gets better by itself' are over.
I recently had a respiratory bacterial infection on my fungal base, like a layer cake 🍰and it was a fast Saturday morning cruise in paramedic bus 🚑 to the ER...🏨
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