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CML and the immune system

It is very early days for me, so I am wondering whether the body's immune system is significantly weakened, (i) at diagnosis, (ii) some weeks after diagnosis, (iii)  some months after diagnosis, and (iv) some years after diagnosis.

My GP's surgery appears to be rather more concerned about my susceptibility to infection than my consultant.

I had my 'flu jab yesterday, and they asked me to discuss with the consultant whether I should have the following inoculations:

Hib / Men C

Men Bx2 8/52 apart

Men A CWY

Pneumococcal at five-year intervals.

Has anyone here learnt anything about our susceptibility to general infections?

That is a great question. I can only cite my own experience. Since diagnosis April 2017, I have not had so much as a sore throat or cough, so my immune system seems very robust. I had also not been sick in any way for quite some time before diagnosis. It must mean that in some cases (like mine, even with a WBC of 280K so it was definitely going haywire), there are sufficient effective cells to fight off any pathogens. Alastair mentions that he carried broad spectrum antibiotics just in case, but rarely or never needed them (have I got that right?). 

I did get a flu shot (as we call it in the US) last year and will probably get one this year too.

Best of luck to you!

 

Hi Justine. Yes I carry some ABs with me in case I need them, and have done since my neutropenia was identified 30 years ago, although I have not had to use them often. My wbc reduced further when I started imatinib 11 years ago when my CML was Dx. I had an interesting chat with Prof O'Brien about this at the conference. He said people with long standing neutropenia tend not to have major issues, it is presumed because their bodies have learnt to cope. (One haematologist said to me (pre CML) "You may not have many white cells, but the ones you have must be pretty good"). However, people who have historically had normal WBC which then gets very low due to a condition or a side effect are more prone to having problems with infections. 

I am having a flu jab in a couple of weeks' time.

In response to Nimbus' original question are your blood counts below normal - white blood count range 4-11, and neutrophil count 2-7.5? If yes your GP surgery may be getting concerned. All of us need to remember that the GP practice staff see very few people with CML, and often don't understand the condition well. A few years after my CML Dx a neighbour became the local GP practice manager, and I used to threaten to invoice him for training staff at the surgery in CML and its treatment. I would say talk to your consultant as they suggest but unless the counts are significantly low I doubt they will want to go down the path of all those inoculations.    

It is a great question.  I was diagnosed 2 years ago and up til then had not had so much as a common cold for nearly 10 years and I have not had one since.  When I began taking Tasigna, however, I broke out in a deluge of squamous cell skin cancers for about 5 months until I began reducing dose.  I also had numerous incidents of swollen salivary glands followed by rather severe mouth sores and these episodes continued until my third dose reduction about 9 months into treatment.  The skin cancers were clearly a failure of my immune system due to the combination of CML and TKI.  The mouth issues were clearly a side effect of the TKI but I am not entirely sure they were a failure of my immune system though I think they were.

I never had significant myelosuppression, so infections have not been an issue for me.

Thank you, Alastair.

I think that the medics at the local surgery are thinking about leukaemia rather generically instead of understanding CML. Therefore their concern from the outset has been that I am extremely vulnerable to infection. This is contrary to the advice of my consultant. It has been less than 11 weeks since my diagnosis and still low down the learning curve. My blood counts are now well inside the normal range and I overcoming most of the early side-effects. I will ask the question about inoculation. Regards Stephen

 

I think you are right. The GP just heard “leukaemia” and wants to play it safe.  My GP insisted I have a personalised action plan as a high risk patient. It’s totally unnecessary, and to be honest I am not really sure what the action plan contains. It certainly doesn’t give me a fast track to an appointment!

David.