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Appointment intervals

Hello to you all.  I haven't been on here for a while but I trust you are all well and doing ok with your treatments.

I was wondering if any of you could give your thoughts or opinions on the appointment intervals which I have been put on since seeing yet another replacement at Darlington Memorial hospital.

I was diagnosed with CML just over 3 years ago and my PCR results have always been ok. I have had one 0.0 and the rest have been around the 0.0something mark so I am very lucky.

My initial consultant who was excellent left some time ago and since then there has been locums and consultants brought in from else where so there hasn't been much consistancy. The last consulatant, I I saw, who said "He was just passing through" when I asked him if he had been posted to the hospital, said he would see me in 3 months time which I was suprised about as in the past I have been on 8 week checks, sometimes 6 weeks which I was more than happy with for peace of mind.

I queried the 3 months and I was told in quite rude way "I can see you up to 3 months at a time" so I I was sent on my way with a bumper box of Glivec.

I am not one to rock the boat so I just wanted to find out what intervals other people are on before I query it next time I go.

Sorry if this was long winded but I would appreciate any replies. Thank you. 

am currently on every three months - however it is really 1.5 months as I see my local hospital every 3 months as well to get a prescription

 

have discussed every 6 months hopefully at last visit to the hammersmith

 

have been in and around 0.1 PCR for last 2 years, dx'd 3.5 years ago

rob

My routine is supposed to be every 3 months but as I am seen by both my local hospital and the hammersmith, it comes out about every 2 months. I was dx in May 09 and PCRU since November 09.  My routine has been 3 monthly as it were since then.  Hammersmith want me to be on 3 month visits for at least another year none the less and thereafter it may stretch. 

Richard

Thanks for the reply guys. I dont go to any other hospital in between appointments so it is a whole 3 months before seeing the consultant again.

I was dx last November, and at four and a half months was 0.6, so the consultant put me on to 3 monthly checks - I'm going back in early August and will see whether the 3-monthly checks are going to be the regular interval for me.  I have a phone number to ring if I need any information in between checks.

Hi Bram  

I wonder if you have been to a specialist CML centre - for example RVI in Newcastle?  Many of us go to a specialist centre about every 3/4 months and see a local hospital inbetween for routine bloods etc.  Share care is normal for CMLers.  I am not sure if RVI is your nearest, or if you are able to trog up the A1 to get there!!  

Its very important for your peace of mind and stress levels to see a specialist and get the best up to date info and care.  Good luck

Pennie. 

Hi, I attend Liverpool Royal hosp every 3 months. I was diagnosed March 2007 and PCR has been 0.00 since Dec 2007. I think if you are doing well and have responded well to the meds, they are happy to leave you 3 months. I don't see anyone else in between. If you're not happy tho, let them know... that's what they are there for.

 

Liz x

I was diagnosed march 2009. And was told in march 2010 that I was in a state of clinical remission which is to say that at the 12 month stage I had. No visible signs of cml in my BCR/ABL test.
As my specialist had said at this point a 10% response would be acceptable, A 1%response is ideal and anything less is very rare.
I have been going to the hospital on three monthly intervals since around July last year and was due to go back at the end of June this year. However my hospital appointment was cancelled and put back through to mid august. Meaning that it will be 4.5 months since my last blood test/ hospital appointment.
Initially I was worried about this until I spoke to my specalist team who then reassured me that due to the response I have had with glivec they are quite happy to postpone the appointment.
They did however say that if I start to feel anything strange then I was to phone the hospital up and they would then fit me in immediately.
In truth I have so much faith in Liverpool hospital and the haematology team there, that I trust all their judgement and recomendations.
After all they are the people who know best as professor Clark said you live your life, let me worry about the CML.
I hope this helps anybody who is worried.
Stuart.