I wonder if many MPN patients read their blood results and in particular their lymphocyte levels. Mine are very low and this is said to be bad for the immune system although vaccination can often help to compensate ( tell me if I got that wrong). I would like to know whether low lymphocytes are common in MPNs and if so, how it affects resistance to infections such as flu and Covid. Jumbo4
Hi @jumbo4 I will copy your post to @GemmaBloodCancerUK to see if she can help you and I hope others can.
If you are free please join the zoom meeting above with @GemmaBloodCancerUK at 1pm today, details above.
Dear @jumbo4, thanks for your message and @Erica for highlighting this. Lymphocyte counts do depend on what treatment (if any) you are receiving for the MPN? Have your lymphocytes always been low? You are right that vaccinations are very important if lymphoctyes are low and any viral infections can take longer to get better. Very important to communicate any worries with your treatment team. Happy to help with questions to ask. Kind regards
I’m a bit sad and have a spreadsheet. Once I’ve asked or more like pestered my GP or clician to upload my results on the NHS app I transfer the levels over so it’s easy to compare and see what to Google…
I have a copy and can send it
Hi @Rammie18 I started with a spreadsheet on graph paper with coloured pens, but I kept on sellotaping new sheets on and then it would not fold well by which time I changed to a computer system !!!
The novelty of going on the computer has kinda faded as of late but this post has reminded me to get my app updated
That would be helpful if you could send a copy to email@example.com
My consultant is on medical leave. The stand in replacement has put the date off four times so far!
@jumbo4 yes, I have had many cancelled appointments, some at very short notice, due to lack of staff, covid, sickness and staff having to isolate. The NHS have been really struggling over the last couple of years.
However I have found the staff I have been in contact with have been mostly so caring.
i don’t know what the answer is.
Look after yourself and please let us know how you get on
Yes mine are low as well but I also have RA which may account for it . I don’t seem to be too bothered with infections, no worse than the next person. I’ve not had Covid, thank goodness so have no idea how I would fare with that.
My GP nurse says that some people have naturally low white cells and lymphocytes, I think that she has a keen interest in all things blood related. Mind you she’s not a specialist.
The best thing you can do is ask questions and maybe even seek out a doctor who specialises in MPNs. I saw Dr Joel Newman a few weeks ago, he is at Guys and can recommend him.
Just remember, you are not on your own in this, all for one and one for all!
Thanks for the offer Tammie but I don’t think we probably have the same treatment history. I am only concerned about lymphocyte levels, mine are 0.6 instead of between 1 and 4. I just wanted to know if that was common in our group of patients