[sessakellyParticipant]

Haven’t written on page for the longest time but once again we need advice and help. Stewart’s on 3 monthly checks now and the latest one seemed to indicate that his pps have gone down from 16 to 13 . It’s been nearly two years since his SCT so this is remarkable? But he’s been feeling rotten since November with colds and viruses and infections and high temps . He hasn’t had a break. But his consultant is going purely on bloods and hasn’t seen Stewart in a year. He stays in touch via e mail. I’m desperately worried and want him to have 2nd opinion but he’s afraid to insult consultant and he thinks recurrent illness is just par for the course? I know he never got complete remission but is this normal? Any and all advice really welcome please . Thanks Vanessa

[mhnevillParticipant]

Hi Vanessa

Persistent infections do seem to be part of the MM package. Although in remission I get frequent bouts of cellulitis. However, have you thought of talking to one of the MUK nurses to ask what they think about a second opinion?

Best wishes.

Mavis

[Ang287Participant]

My husband is also in remission and has been for just over a year. He had one infection after another from about October until January or February and was on antibiotics all the time but he has now been ok for a couple of months so I hope your husband gets a break from this soon. In my husband’s case it may be because his neutrophils are low which may be caused by the maintenance treatment he is on. He has monthly bloods but just sees the Consultant three monthly now.
Best wishes, Angela

[sessakellyParticipant]

Thanks ladies I really appreciate your advice. I will call the nurses tomorrow and maybe try to worry less. I’m probably driving Stewart crazy!
So grateful to you both

Vanessa

[rebeccaRParticipant]

Hi Vanessa, I am 16 months post SCt and for last 2-4 months only- since SCT – have had a cold/cough/chesty etc. When I went for my bloods 3 weeks ago it was a day where I had a temperature, felt dreadful like I had flu and thought this would be reflected in my bloods and light chains. When I saw the consultant my bloods were good, neutrophils etc ok and no rise in light chains which surprised me. He told me my immune system was that of an average person and when I asked why I felt like death n was constantly catching things it was put down to me working etc and mucking out my daughters pony (just the chest side of things)- which I was to stop. Around me loads of people have been catching things and unable to shake them off too so I think I’ve just been unlucky and it is not related to MM. Inevitably, as a consequence of MM there is a danger that we attribute everything to it when it isn’t really. For instance, I have v low kidney function also and when I play tennis anyone who shakes my hand remarks they are like ice – as they are – this can be a side effect of poor kidneys and I know people after SCT always say they are colder – but I’ve always felt cold and had icy hands and I have to remember this before I start blaming the transplant etc. It’s an easy trap to fall into and I think magnifies the constant “mental” awareness we all now have.
Rebecca

[andygParticipant]

Hi Vanessa.

Unfortunately coughs, cold, and infections are a way of life for us mmers so it’s not unusual. Even when not neutropenia our defences are low. The constant being under the weather will get anybody down and as long as his blood tests come back ok there’s not a lot that can be done.

You can ask for a second opinion and it won’t be held against Stewart though I suspect that it won’t change much. That’s obviously only my opinion and I could be wrong.

Try not to worry too much, easy to say hard to do, and stay vigilant. I go through what you describe every winter and usually end up in hospital at least once in the new year!

Every day is a gift.

Andy xx

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