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What do I ask?

Hi,

I have been recently diagnosised (only a few weeks ago) with CML after a long search into why I have not been feeling well for the past year this dx was from results of a Bone Marrow Biopsy where they found I was PH+.

My white cells were between 25 and 30 (so not low but not too high) and my red cells were also raised slightly (has anybody else had elevated red count when they were dx as well or might this be a sign of an additional MDS?)

I have been on Glivec now for two weeks with no big side effects other than a bit of inability to see clearly (what I called "Sparkle Vision")one day for about an hour and the weird jaw pain/spasm which came out of nowhere but seems to come and go.

My first post-dx appointment is tomorrow to check my hemo response. But I am not sure
What questions should I ask?

What do I want to know in order to see if I am progressing?
What blood count etc information should I be asking them for?
I did not have any blast cells as far as I am aware at least in my blood, but is it possible to have blast cells in the Marrow but not the blood? How is this measured?

I am comfortable (I think) with the thoughts of my hemo/onc currently that drug therapy seems like the best path to take at least in the first instance but at 39 yrs old with two small children I thought of requesting a second opinion, does anybody have an idea of who the leading specialist in the UK and how easy they are to access/make appointments with?

Kind Regards and thanks for being here
Bill

Hi Bill,

I too was diagnosed a few weeks ago with a white cell count of 29 and bone marrow Ph+. I am much older than you at 61. I have been on Glivec for three weeks now, with the only noticeable side effect a bit of queasiness/sickness.
After two weeks on Glivec, my white cell count was 13.5 (don't have today's 3-week result yet), platelet count normal, red cells normal. Yippeeeee! Much faster response than I expected.
I am satisfied that my local hospital doctor is competent and that I am getting the right treatment. However, I feel I owe it to myself to get a secong opinion and find out what else might be out there. The leading expert on CML seems to be a Prof. Jane Apperley at Hammersmith Hospital. I have a referral from my local doctor and am seeing her next week. The appointment didn't take long to get.
I have also been told that the prognosis with Glivec is now very good. Apperley's predecessor, Prof. John Goldman, seems to think that 20 years is a reasonable expectation for those who respond to Glivec, although that is clearly a substantial (valid?) extrapolation.

Keep positive,

John

I support what John said above. There are other CML Centres across the country though, where do you live ? The Hammersmith is regarded as the best and the whole team there are excellent. The baseline questions you want answered are:
- Am I 100% PH+ ? [I say this as your wbc is quite low]
- Have I got another chromosome translocations other than the 9/22 ?
- an explanation of your bone marrow report
You should then be monitored regularly on Glivec to see how you respond. There is no point overloading yourself with information right now, just take time and it will all come together.
Good luck
Elizabeth

Hi again Bill,

Three weeks on Glivec and wbc is down to 7.5. All other parameters in normal range.

Incidentally, back in the early 1970s, I was involved in developing and setting up exclusion isolators at Hammersmith (and Westminster Children's Hosp.) for leukaemia patients. I didn't think I would be one! They were at the forefront then.

John

Hi Bill

Welcome to the club! I was diagnosed last September and asked the same question about centres of excellence a few weeks ago. The following is taken directly from Sandy's reply:

"certainly Hammersmith which is also good for transplant and....
in my personal opinion and not in any order of preference :

RVI Newcastle (O'brien)
Leeds (Smith)
Queen Elizabeth,Birmingham (Craddock...
another good transplant facility)

The Royal, Liverpool (Clarke)
Manchester (Lucas)
Bristol (Marks)
Glasgow (Holyoake)"

Hope this helps and all the best for tomorrow!

Regards, Janet

Hi Bill and John,

You have both been diagnosed very early in the chronic phase of CML. It has been my experience that Gleevec works really well and very quickly for these patients. Hope to enroll you in the Zero Club very soon.

You ask for a copy of all your blood work and all your marrow testing. Once you have 2 or 3 sets of results you will know how well you are doing. They are very easy to compare

Zavie

Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca