[andygParticipant]

Hi All.
Today hmm start again 😉 yesterday we had our meeting with Prof. Jackson at the Freeman Newcastle. The outcome of which is I'm to continue with my cyclo/rev/dex regime for now. He wasn't worried about my PP levels hovering between 35 – 41 as long as I wasn't presenting with any other symptoms. He also ran through some options that were available once CRD started to fail including old and new treatments and also trials. Depending upon what was available at the time. He ruled out an auto sct as he said my marrow wasn't up to producing enough stem cells but said an Allo sct maybe an option at a later date. We came out happier than when we went in which I think is a good thing 😉 We are seeing him again next month for an update.
Whilst we were there we had a coffee and a good old chinwag with the lovely Helen.

All the best.
Andy & Steph x

[tomParticipant]

Hi Andy and Steph

Its Looking good and even a plan if it starts to fail (but we know it wont) I hope its a long way off before you need the SCT.

Elaine (the young bride) and I are going to Newcastle next thurs (16th) for my Audition for deal or no deal 😎 scarey aint it Lol.

Good Luck with it Andy.

Tom "Onwards and Upwards" 😎

[HelenParticipant]

Hi Andy
How kind. It was really nice to meet up, keep in touch
Love Helen

[VickiParticipant]

Hi Andy and steph,

Well really pleased for you to hear that there are some options, old and new. That's really great. It's good to have a boost so that you can keep the really positive attitude going. This forum is an absolutely godsend for those who have the condition , and those that watch this going on!

Best of luck with your next phase of treatment

Vicki and Colin x

[ElizellenParticipant]

I am so glad you had such a useful meeting with your new consultant, Andy and Steph!!

And as a bonus to be able to meet a fellow board member too. 🙂

Love
Eliz
XX
X

[mhnevillParticipant]

Hi Andy and Steph

I am glad that the second opinion led to a better feeling. At least you were listened to and have been given some options for the future. I'm really glad you got the reassurance about the pp levels as they can be a bit terrifying can't they.

Very best wishes.

Mavis

[Author]

Posts