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Plateau

Hi all, just had my latest results and they are 0.415 % (Feb 11),  My 2 previous results were (Nov 10) 0.436 and (Aug 10) 0.295.

I feel now that after 14 months I have reached a plateau on Glivec.  I have very few side effects, mild dry skin and skin rash.  I was wondering what anyone thought the next steps should be.

My onc seems to want to wait until 18 months to see where I am at then, is this a wise strategy.  I am seen at Haywards Heath and was wondering if I should ask to be referred to Kings.

Also my BMB was 0 leukemic cells last August and now my onc just said he has realised I have a complex bcr abl that cannot be tested from marrow.

Slightly confused now...

Cheers

Ian

Hi Ian

Waiting to see if you get a result in 18 months seems a very strange thing for your Dr to say, the quicker we get a good, low result the better as far as getting CML under control and long term prognosis. 

A referral to a specialist centre is always a good idea.  CML is a complex and rare condition and needs to have a specialist overview.  I think you can do share care between your local hospital and Kings.  As you have a complex bcr abl it would be a good idea to ask for this to be looked at at Kings, it might mean you need to be on one of the 2nd generation treatments.

I go to Kings and am very happy with my care.  I am now on Tasigna and doing well.  There is an active patient support group at Kings, and an excellent CML specialist support nurse.

MIght see you there

Pennie

Hi Ian

 

Who do you see at Haywards Heath? I'm with Paul Hill there and he did my initial dx and BMB but he also referred me to Prof Mufti at Kings and is in correspondence with tham about my results, I am 3 log and so choose not to travel up to London for PCR but before a couple of results at 3 log I went up every 3 months and saw one of the Kings team. I thought this was normal procedure.

If you want any more info - just ask.

Marian

After nearly five years, my results still aren't quite as good as yours, I'm seen at Eastbourne, with bloods going off to Kings. I'm on second line Dasatinib, after failing to respond particularly well to Glivec after a couple of years. I think weighing up how well you feel, how well you're coping with side effects is a big consideration here and for ME, I would prefer to remain with the results that I have just now, being kept an eye on periodically, rather than change to another treatment and have to deal with  changing side effects.

So, I do think this is a personal decision, but so long as Kings are aware of your results and you're feeling OK, I'd say don't worry, get on with your life until you really need to address this issue.

Others might disagree and I wholeheartedly respect this.

Good luck to you!

Vickie

Thanks for your responses, very useful and informative.

I have emailed Paul Hill with my concerns/questions and will see what he says.

Cheers

Ian

...know how you get on. I'm sure he will refer you. What Kings will do who knows. My experience was a fairly good drop between jan 06 and aug 06 to 0.983% No change in meds from Kings. I continued to fall slowly until May 08 which was at 0.156%. Dr Ho then but me forward for the BSM trial. Went through all the tests including a BMB which was sent to Germany. It came back as 0.05% so MMR and so not eligible for the trail. I have, so far, maintained my descent with last Decembers being the lowest yet - at 0.021% My last PCR was done a couple of weeks ago and so will get the results soon.

Kings approach does seem to be softly softly and they seem happy if you can maintain low counts over chasing the ever desirable PCRU

ATB

Marian

Hi Ian... I agree with Pennie. Given you have been told you have a complex bcr/abl (I assume he meant complex translocation?) it might be best to get yourself referral- either to Kings or Hammersmith.

Best... Sandy