Has anybody experienced or read about the prob... - CLL Support

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Has anybody experienced or read about the problems of recurrent infections following FCR in spite of all blood test results being normal?

Bisto profile image
BistoCLLSA
8 Replies

Having gone through the pain of FCR from August to December last year, I am now in remission with normal blood test results. However, I have suffered from recurrent infections, some more debilitating than others, since March. Sputum tests have identified Haemophilius influenza (spelling might be wrong!) and I am now on my sixth course of antibiotics. I am much better when taking the antibiotics but when they have finished cough and congestion return. I have been told that this is common for up to twelve months after treatment. Any comments?

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Bisto
CLLSA
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Usually has to do with low CD4+ T cells... perhaps low levels of immunoglobulin A (IgA) which is produced by the mucous membrane.

en.wikipedia.org/wiki/Immun...

Dr. Hamblin wrote

Fludara is much more toxic to T cells, knocking the T helper cell levels to about the same level as is seen in AIDS patients and for two years or more.

mutated-unmuated.blogspot.c...

Bisto profile image
BistoCLLSA in reply to Cllcanada

Thank you. Two really useful and relevant articles.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Bisto...as an after thought, request an immunoglobulin (antibody) test, this will give the levels of immunoglobulins IgG, IgA, and IgM. These get depleted in treatment. IgA and IgM will always remain sub par, but IgG can be augmented by a blood product infusion refered to as IVIG.

The good news is that IgG does some of the work of the other two, and is the primary immunoglobulin fighting bacterial infections...

Worth perhaps discussing this with your doctor, although antibiotics are always used first because IVIG is very expensive and it is an IV monthly infusion, some find a bit limiting...

~chris

jangreen profile image
jangreen

After six mths of hell (FCR + M Oct 2010 - March 2011) I had chest infection but anti biotics cleared it although I stil cough and bring up most mornings. I had a bladder infection again cleared with antibiotics and shingles which was also hell. At the moment I am well and have been for some mths but I do try to look after myself. Unfortunately my immune system never went back to normal also platlettes are around the 100 mark and the chemo affected the nerve ending in my feet leaving me with painful feet. I hope the above doesn't depress you too much but I know how you feel. I thought once the chemo was over I would feel better straight away, how wrong I was. Best wishes and I hope things improve for you.

morton profile image
morton

Hi Bisto

I finished FCR in April 2011, I had very few problems with it at all. My neutrophil levels remained low and I got a chest infection which hospitalised me in October 2011 and whilst in hospital contracted the dreaded noro virus. I was given an infusion of immunoglobulins in hospital and had a further 3 at monthly intervals, by which time my neutrophils were in normal range.

I've only had two infections since then; shingles in July 2012 (I feel this may have been more due to the loss of my wife rather than the CLL), and a chest infection earlier this year which took nearly a month to clear.

My haematologist told me my immunity should get better over time but will never be as good as it was prior to CLL. Things do seem to get better after about 12 months, but I think no two people will react the same .

Good Luck

Alan

Bisto profile image
BistoCLLSA

Thanks for the replies. They confirm my suspicion that the damage done by the toxins in the chemo can cause damage in different ways in different people. My neutrophils have always been low and I have been on monthly IVIGs for four years well before the FCR but naively I thought I would be back to full health with no monthly infusions and no infections once I was in remission following treatment. Thank you CLL Canada for the Terry Hamblin article it describes my experiences accurately.

JamesH profile image
JamesH

Apart from AF, I am IgA deficient. I was diagnosed when I was 24 and am now 63. I have taken nothing what so ever for this as it had made not one little bit of difference to me. Mind you, my dear Mam, (God rest her) had Mass said for me so many times that a miracle may have occurred, but I never notice. James H.

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