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Good news - Glivec seems to be working

Hi everyone
At last some good news... I went back to the hospital yesterday and my WCC has come down (from 270 to 127) so it appears the Glivec is working! Also had the scan done on my spleen and liver and although they're enlarged, there didn't appear to be anything untoward there. To counteract the side effects I'm having, I'm now taking it in 2 doses per day of 200mg and I've got to go back in another 2 weeks.
So, feeling a bit more positive now - although I feel like this is the beginning and not the end - if you see what I mean?
I have a few questions though:
When the count gets to 'normal', then what? The consultant gave me the impression bone marrow testing wasn't done routinely any more (despite other sources telling me the opposite). Does everyone have bone marrow tests done and how often?

Thanks Rachael

Hi Rachel So pleased to hear that your WCC has come down.

As you say this might be the end of your beginning with CML ! It takes time to come to terms with the life impact of such a diagnosis, try and be gentle with yourself for a while as the whole gamit of information gets sorted out for you. We have all been there, and will help of we can with our knowledge, its different for everyone, and takes time to get used to.

Different hospitals have different protocols on bone marrow testing, but usually there is one done near to diagnosis to get an accurate base line.

I have been living with CML for nearly 8 years now, and testing regimes have changed many times along the way. At Kings College Hospital, where I am now treated I still have one bone marrow biopsy a year, the rest of the time tests are done on blood.

Take care
Pennie

Great news on the drop of WWC,its early days,my advice is look at the FAQs there is a good article on the stages of remission,CHR,CCR,MR, and explains fish testing from blood and bone marrow,
Are you at a good CML clinic ?,I am also at Kings College Hospital and my consultant is Dr Ho who is excellent,I see him monthly,and have normal bloods monthly and marrow every six months and blood tests (fish) 3 monthly between

Hi Michael.
How do I know/find out if where I am being treated is considered a 'good' CML clinic? I guess we take it as read that we will receive the best treatment possible - wherever we are.
Thanks

Hi Rachael,

There are a few centres of excellence for CML in UK. Jane Appleby at Hammersmith and Dr Ho at Kings in London, Richard Clark Liverpool, Stephen o'Brien Newcastle. There are others, but I am not sure of them all. Sandy, or some of the other 'old timers' ! (I am an old timer - 8 years now) will have full info.

I am so glad that I got a second opinion soon after diagnosis, it made all the difference to feeling confident that the treament I get is the best. You can ask to see a specialist centre, even if its just for one initial visit. Many members on the list do share care with a specialist centre for maybe 2/3 visits a year and the local hospital for the more routine visits.

Hope others will chip in with names and places for you.

All the best
Pennie

Dear Rachael.......As you are in Bedford I think the best option would be for you to go to Addenbrookes Hospital as I think it is the nearest in that region.

Sandy

Thanks everyone. Am going to raise this with the consultant when I go back next week. If nothing else, I need reassuring that I am receiving the best treatment possible.

At Kings you have
1 Cml patient/carer surport group
2 specialist CML nurses
3 phamacy that dispences cml specialist drugs
4 has a specialist lab that tests for BCR-ABL,
5 a day treatment ward,
6 has a number of CML specialist consultants,these consultants are at the cutting edge of CML treatment.
7 has its own Apheresis unit and transplant team
8 has a Haemato-oncology counsellor

At my local general hospital,General haematology consultant,and a hard pressed chemotherapy suite for any day to day needs,bloods sent to another hospital for BCR-ABL testing,often delays in results,getting a local phamacy to open a account and order in Glivec causeing delays,
I went to see my MP who is a GP who said why wouldnt you want to go to a top CML clinic ?,so I pushed and pushed and got refered,so it costs more time and money to go there,but we are talking about your health,If specialist clinic are not better why do they exsist?
take care Michael

Thanks Michael. Your recent post has certainly convinced me that I need to discuss this with my current consultant. Kings sounds like it has great facilities - you are very lucky. Will keep you posted but thank you so much for the information and taking the time to reply to me.

Please do keep us informed about your CML journey,Yes very lucky to to be at Kings,Leukaemia research(they have about 20m to spend per year) currently invest£800,000 in scientific research in haemotogial medicine at Kings,in June this year kings celebrated its 1000th BMT,but rest assured there are other very good CML clinics up and down the country,I could have just as good treatment at the Hammersmith Hospital which is also very near.
best of luck Michael

Hi Rachael

As Sandy says Addenbrooke's is the place you would probably get transferred to from Bedford; it is where I went when I needed more specialist help. Dr Huntley is a CML specialist who also does research and he has several experienced doctors working with him. There is also a transplant team under Dr Crawley who have dealt with my transplant. I have nothing but praise for the Addenbrooke's team on both the general CML side and the transplant side. I have received excellent care for over 12 months and Cambridge is easier to get to from Bedford than the London hospitals.

Do keep us posted on your progress. Also if you want to get in touch I have now been discharged from hospital and am at home. I will not be out and about much for a while but I will be by a phone and a computer for any questions you may have.

Take Care

Helen