Hi Louise,
It was good to meet you and Wayne this morning. I do hope you appointment went well, and that Dr Ho was able to give you the information you wanted.
Do use the forum here to ask questions, people are so helpful, and there always seems to be someone with ideas that answer the questions.
Hope to see you both again soon, post when you are next at Kings if you want to meet up, or perhaps we will catch up at the seminar.
All the best
Pennie.
Hi Pennie,
Thankyou for taking the time to come & meet Wayne & myself,it was great to catch up.
My appointment went well although Dr.Ho still isnt sure how to proceed with my treatment,so I'm back there on the 3rd November to see if he has been able to find out more. Unfortunately with it being so rare theres no information at the ready to use as guidance.
I also have to have another Bone Marrow done on that day too , seems I'm having one a month done at the minute! Arghh.
My CML seems to be under control for the moment its just this JAK2 thats causing the concern.
Dr.Ho has told me to take aspirin everyday to reduce the 'stickiness' in my blood,thus reducing the risk of blood clots.....Am also taking Calcium tablets as he thought that was what was causing my cramps (my calcium levels were slightly low).
Once again thankyou for your tips & advice & we hope to see you soon .
Take Care & Best Wishes
Louise & Wayne
Hello to another Kings CMLer.
Good to hear that the CML is responding and that you have met up with Pennie who proved to be a valuable source of information when I was first diagnosed back in Feb04. 'Twas she that got me (with a few verbal kicks up the backside) to Kings and away from the local hospital (let's just say somewhere in North Kent) after some BMB samples were 'lost', and then deposited me into the clutches of Prof. Mufti and Dr. Ho. On the down side Pennie's husband Bill and my wife Trish (our 'carers' - I hate that word) now get to have regular discussions abut what pains in the backside we are and plot how to deal with us!
Good luck!
Paul C
Costa del Sheppey
XXXX
Hi Louise,
I am due to attend the European Leukaemia Net conference in France in mid October and will try to find out more about this sort of complication. One of the abstracts I looked at about this problem was written by a French CML specialist who I met at another conference earlier this year. I will try to get some information for you.
meanwhile make sure you take calcium supplements separately from Glivec.
best wishes,
Sandy
Hiya Paul,
Kings is a great hospital isnt it !! I was 'lucky' enough to be transferred there following my diagnosis of CML at my local hospital. I spent a month at Kings & received great care from the Dr's & Prof Mufti.
I did continue to have care at both hospitals when I was discharged but following a few 'slip ups' at my local hospital,I decided Kings was the best place for me !
Pennie was fab , taking the time to sit & chat with me & my husband & answering any concerns I had.
Hahahaa I can imagine your wife & Pennies husband comparing notes on you both !
Thanks for dropping me a line ....
Take Care
Louise.
