You are here

Patience

It is today the 3rd anniversary since my cml dx. I've been on Imatinib 400 since then. By March 2010 my PCR count was 0.04% but from then on they rose a little so for the past 2 and a half years they have wavered between 0.07 - 0.19%.

I have wondered if I should go onto 600g Imatinib or change to Nilotinib to try and wipe out all cells, but my haematologist has always been happy for me to stay on my usual dosage of Imatinib and I felt that the devil you know..........

Today I learnt why we are called "Patients" (bad pun, sorry) as my PCRs have been down around 0.03% since May, apparently. As I am in the control group for the WIN trial (I didn't have the necessary gene to have the vaccine) my PCRs are tested by HH very regularly but I don't ask for results until my 3 monthly clinic appt.at my local hospital. I literally jumped up and down at 0.03% to my dr's amusement. I am also on the Spirit 2 trial so all PCRs are tested at HH although I am treated at Exeter.

I am posting this as there have been several postings regarding blips or marginally rising PCRs and a rise is something we obviously worry about despite the great advice on this site and from haematologists. I would say "hang in there and take the tablets daily". Fingers crossed that these counts continue to fall.

I hope this sounds positive to everyone in this position.
Best to all and hope you had a good holiday, Sandy,
Chrissie

Hi Chrissie,
This is very good news! You must be chuffed to bits, its very positive news. How are the painfull feet? Just wondering if you had a drug change if things might improve pain wise for you?
I wondered if we might have bumped into each other on Monday just gone, im back in it 2 weeks again, might you be there too? Hope we can meet before October?!

Lots of love to you,
Ali x

Hi Chrissie- great news for you, and yes I do agree with you- that is as long as you have a doctor who you can confidently say is monitoring you well then you are in the best situation possible. Given that you are in a clinical trial then expert monitoring is a given.

Because of the Guardian Supplement, I have had a message from a CML patient in the South West and wondered if there might be a way I might put him in touch with others in the same region. Do you have a way to meet up- maybe with other CML patients at your hospital- Exeter?

Congratulations again, and yes- I can recommend Skopelos Island in Greece- I had a very peaceful time.

Sandy

In the Forest of Dean, which is quite a way from Exeter.

There have been times when I really did need someone to talk to.

Hi Jeff, Chrissie, Ali,
I know that Ali was very keen to start a S/W support group some years back. If you feel there is a need (and I am sure there is) how about setting up an informal group to meet up every few months or so- at a location that would be easy for all to access/travel to? Maybe one of the local hospitals/clinics would donate a room (HH and Kings do this).

Sandy

Hello I am in Bristol and like the idea of having something a bit more local every so oftan. I am heading up to the London thing this Sat so hope to meet a few others then, never been to one before! How is the best way to organise such a thing?

Kate

Hi - I live in East Devon and also like the idea of meeting up in the area. I was diagnosed 4 years ago and am treated in Exeter. This website is really helpful - and inspirational.
Barb

Hi I to like the idea of meeting people with cml, I was going down to hammersmith today ,but at the last minute decided was just to fare,his there a meeting sandy in the near future which his closer to where I live Cannock staffordshire ,also will there be any audio or video referance to the meeting ?.look forward to hearing from you. All the best tony m.