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How often patients see their consultant

Hi this is mainly for all you knowledgeable cmlers!!!! My husband has had cml since 2006, I always read the site but only post when I want advice, usually from sandy:-) anyway he is treated at are local McMillan centre in Milton Keynes, which I know from previous postings isnt a specialist centre. He is on 400 glivic in the 1 tablet form, usually his results are good although sometimes they rise, although they can find no reason for this! He is usually seen every 4 wks for blood to be taken & given tablets.. Until last time he attended he was told by the consultant that he now wants to see him once every 6months & the glivic will be posted to him... Is this common practice? As we feel a lot can happen in a 6 month period.. He suffers all the usual glivic side affects.. Any comments to put our minds at rest would be great.. Thankyou.x

Hi

It's difficult to give advice as you don't say what your husbands blood results are and what his pcr is. You mention sometimes the results rise a bit but again it's difficult to comment as we don't know what they are and what they rise to.

It's quite a jump from 4-6 weeks to six months. I would suggest 3 months for a period and then 6 months if the results are stable and going in the right direction.
I'm coming up to my 9th year with CML next month.

Generally advice given here is that you are seen either entirely or joint care with a Center of excellence where they deal with CML on a daily basis.

I cannot add much to Steven's comments which I totally agree with. His suggestion that your husband asks for his appointments to be 3 months rather than 6 months seems entirely reasonable.
I also agree that you could ask for shared care with a CML expert centre- London is not that far from you and there is a choice of Hammersmith or Kings.

I assume the reason they are cutting his visits is to do with the fact that he is doing well, so maybe this is a good sign rather than something you should worry about.

However,if you have your husbands PCR results and would be willing to share them with us then that would help us allay your fears. If you don't have copies of his PCR results (at least the last 3- or better still the last years) then you should be able ring the clinic nurse and ask for them to be sent by post.

The reason for home delivery of TKI therapy is to save cost of VAT which is charged (to the hospital) if the hospital pharmacy dispenses the drug but not if it is home delivered).

Best wishes,
Sandy

I was wondering about this very subject recently. I too am on 400 mg Glivec, and have been for nearly 4 years now. My last PCR was 0.017, and other results all fine. The consultant told me he didn't want to see me for 4 months instead of the usual 3, and after that it may be every 6 months (which I took as good news, but...).
I am on the Spirit 2 trial - does a 6-monthly interval between checkups fit into the trial protocol, does anyone know?
Olivia

Dear Olivia,
well done on the achievement of such low pcr's - your last is equivalent to MR4 on the international scale.
I have just taken a look at the SPIRIT study website and found the Sp2 protocol which says the following which I hope answers your question.

best... Sandy

The study will last for five years. You will have a bone marrow biopsy at study entry, and then every year.
You will need to give blood samples once a month for the first three months, then every three months for the remainder of the first year.
Thereafter you will need to give blood samples every six months. You will have a physical examination at the same time you visit to give these blood samples. You will be asked to complete a health questionnaire at the start of the study and then every month for the first three months and then at six and twelve months and then once a year until the end of the study

Thankyou for your advice everyone I will post his pcr results when I have got them from the clinic. Once again I appreciate all your advice.x

Thanks Sandy. I had assumed my consultant knew what he was doing (!), but it's good to have your confirmation.
Olivia