Initial symptoms of MDS

[chris]

Hi Norma

I thought I’d replied to this but now cannot see my post! Grrrrr!

Anyway, ……I said I’d check with our admin and membership officer that you are on the mailing list for enewsletters and meeting invitations.

Hope the EPO is kicking in. The reduction in your bothersome symptoms sounds encouraging so fingers crossed!

All best wishes

Chris

[NDTA10]

Hi Chris just thought I would let you know how I got on today at my appointment. I was worried that they were going to say that the EPO was not working and it would be transfusions in future. But miraculously not only are they working but I'm now just slightly anemic. Even the haematologist was surpised. My neutrophils are still quite low at 0.7 but I'll take that. She said that my prognosis is that it's chronic MDS as its low risk and explained what my diagnosis really means for me with regard to trilinage MDS. So I'm a very happy bunny. Norma

[chris]

Hi Norma

Oh that’s such great news. You must be relieved that the EPO is working well and your Haemoglobin is much improved. I’m so pleased for you.
My neuts have been between 0.4 and 0.8 for over 15 years. I just try to be careful and avoid anybody who has symptoms and, as I mentioned before, since Covid I’ve sadly had to drop some of my activities that involve going indoors with lots of people — like my choir and my Book Club. It felt ok during lockdowns as everybody was in the same boat but it’s been quite hard since the world has forgotten that people like us are still at risk and now carry on regardless!!

My daughter just tested positive the morning after we’d babysat her youngest so now I feel I’m sitting on a ticking time bomb to see if we get it -after nearly 5 years of avoidance!! Fingers crossed!

The newly-diagnosed meeting on Monday was very successful and we’ve had great feedback. Look forward to seeing you at one in future. I’ve asked our team to check you’re on the email list!

Well done to your body and EPO!

All best wishes

Chris

[NDTA10]

Hi Chris I have just registered for the Friday zoom meeting so thank you for chasing the emails. I've never done zoom before so fingers crossed I can do it OK. My husband is the techy one but he's away skiing. I also joined the FB community which is a big step as until now I had always had a negative mindset about it but it's very different from ordinary FB. Kind regards Norma

[chris]

Hi Norma

Thanks for registering and we look forward to seeing you. However some STOP PRESS news! Our clinical speaker for Friday has had to cancel at short notice so we are holding the meeting as a patient-to-patient support meeting instead of the advertised one on Azacitidine -but that would probably be just as useful for you? You should shortly get an email about this -working on it now!!

Hope you can manage the tech side ok without IT support off selfishly enjoying himself! It’s quite straightforward. We’re there to help if any problems.

Glad you’ve braved the Facebook group and hope you get more responses on there than just me!!

Look forward to seeing you “ virtually” on Friday.

Best wishes

Chris