Hi, i was diagnosed with CML on 20th June this year, im on Imatinib, and things are going the right way. I had a flu jab yesterday, didnt have the offered covid as had both on the same day last year, and felt very under par for a week. Thinking about it, i probably had CML then, so that would explain it, so i thought id have a few week gap just in case,am i being too cautious? I live in a very rural Village, but obviously covid is here, we are not any safer, but i can, and do keep relatively quiet and remote whilst i get used to all this, and the side effects of my treatment, whilst not becoming a hermit!
Im still not so good with the way my Haematologist reports my results, im so number dyslexic, but to me.....19th June ....204, 9th Sept....6.2, seems good? Should i just go ahead and have the jab?
I find this support group so useful, and its stopped so many potential panics, i thank you in advance for your advice!
You are here
Confusion!
Hi Amanda,
Welcome to the Forum.
The official NHS guidance regarding Flu and Covid vaccinations is that you can have them at the same time. Although personally I had my flu jab on Thursday and have my Covid vaccination booked for next Saturday since I didn't want 2 dead arms at the same time and also in the unlikely event that you develop side effects from the vaccine, it would be more difficult to determine which vaccine was the cause. If you are over 50 and living in England, you will also be eligible for the Shingles vaccine (2 doses are required 6 months apart).
The results you have quoted look like your White Blood Cell Count, if so this has returned to normal. The key result to monitor now is your BCR-ABL PCR Test. You should have already had one of these tests to provide a baseline and should be having one at least every 3 months. Ideally you should be below 10% after 3 months, below 1% after 6 months and below 0.1% (Major Molecular Response) after 12 months and thereafter. The key thing you can do to give yourself the best chance of reaching these milestones is to ensure you take your Imatinib every day.
Please keep in touch and let us know how you are getting on.
Take care
James
Hi James,
Thanks so much for taking the time to do such a comprehensive reply, i think ive been concentrating on my white cell count alone, and ive realised that i have a lot more to think about, and probably worry about!!
I dont think i have my baseline results for the other stuff, but i have a blood test early November, and a follow up telephone appt. with my Consultant, so i will try to make more sense of what he is telling me, and refer back to your reply. I will also go ahead with a covid jab.
Obviously i wish i didnt have this disease, but there is great support out there, and i thank you again for yours. Amanda
Hi Amanda welcome.
I'd like to point you at this page https://cmlsupport.org.uk/section/just-diagnosed , especially the template questions to ask your consultant. Many people find getting an understanding of the condition helps to deal with it, and this section of the website will help you start on that. I hope we can help you avoid unnecessarry worry; the vast majority of CML patients will die with CML after a normal lifespan, and your improving White Cell Count starts to give confidence that this will apply to you.
best wishes
Alastair
PS I had my covid and flu jabs at the same time last Saturday.
Hi Alastair,
Thanks for your reply, i have to say i feel a lot better today , such a good forum for settling the fear a bit! I must have missed the just diagnosed page completely, it was just blind panic , it doesnt take much for me to be fuddled, but i can see its all there, and i must start getting it all understood so i can live as normal a life as i know its possible to do. I will keep in touch if thats ok, im so grateful to have Imatinib, but they are, and need to be, a bit hefty! Cant think of another way to describe them! Best wishes, Amanda
Amanda do keep in touch either on the forum or you can send me a direct message using the envelope icon in the top line of the page.
If you were disagnosed in June you are just past 3 months so hopefully the major side effects are beginning to die down. It is a complex subject so take in the info in bite sized chunks - don't do A level stuff until you've got the GCSE cracked.
I'm 17 years in, always an imatinib patient. It may be useful to have a read of this rather long thread which goes through my ultimately unsuccessful attempt to give up the pills. This started when I was 10 years in aged 60 - https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po...
Trying for treatment free remission is a few years in the future for you. For now, taking the pills very regularly is the most important thing you can do.
Best wishes
Alastair