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1 month and counting

Just come back from HH from the first of many monthly monitorings. My wbc, platelets hbg etc had not changed from a month ago when I stopped the Glivec initially. I was surprised that the wbc especially had not started rising ( still at 3.5), but HH did not expect anything yet as it is too early apparently.

I will get my result of my first PCR off Glivec next month, although HH will telephone me before that if anything substantial happens in order to get back onto the Glivec straight away.

I have to attend monthly monitorings for at least 6 months and then who knows. Enough said that I feel like I have come out of first gear, My eyes are round again, no cramps since my last tablet, insomnia much better, energy levels rising daily, mental aspect much brighter. Although a lot of you think this is brave (or stupid - I suspect you may think) it is something I particularly wanted to do, and would not have entertained the idea if HH had forbidden it, but they are backing me 100% in this, for which I will be eternally grateful. Dr Marin expects me to regain my previous PCR results should I need to retake the Glivec, I have read much literature on this and I have a 50/50 chance of staying off Glivec. Something I have persistently asked my physicians about since getting to pcru 3 years ago.

My decision (brave or stupid) is mine and mine alone and I would neither recommend or suggest it to anybody else. Do what is best for you. I have such complete confidence in HH that I feel I have done the right thing for me.

I will keep you all informed

Des

Hi Des,
Good to note that all is well. I do not think its a stupid move and I
have to say that what you are doing is very brave indeed. With your
docs firmly committed, you have little to fear as Glivec would still be
here incase of need. The statistics are all in your favour. Good luck.

take care,
daniel

I think I know why you made your decision. The side effects of Glivec for some are unbearable. I had thought about doing this too, not just because the side effects but also the poor care being offered @ Belfast City Hospital. I asked my Health Board for a different Cancer Centre & they refused. B.C.H. told me @ 43 I was too old for a Bone Marrow Transplant, no other TKI's were available apart from Glivec, plus they did nothing to help my side effects. No pain relief, no help with water retention & no help with cramp(which drew me to tears on so many occasions), my GP told me to drink more milk! - which did not help either. It was also implied I was selling my medication (which of course was untrue)& I was also told what I was thinking by one particular doctor. So I stopped attending BCH & taking glivec @ the end of 2008.
The cramps have stopped & the puffy eyes are no more but the bone pain & lack of energy is still as debilatating to date.I hope the latter two will resolve soon.

Hi belfez, I think your story is so sad. To be treated as you were when you are feeling pretty vulnerable anyway is awful. I particularly asked for a referral to Hammersmith Hospital as I knew (from the cml site) that they are the centre of excellence for leukaemia. I don't know how you manage in Belfast. They have given me hope when my local hospital (who are really caring) could not. I still attend my local hospital for medication (but of course I don't need any at present). You do not say what your PCR was when you stopped the Glivec on your own. I had been PCRU for almost 3 years, so felt the risks in stopping were less than for some others. But I must stress that if HH had said no, then I would not have entertained stopping. Could you not find another hospital via your GP, are flights too expensive to maybe see HH a couple of times a year. I have joint care between my local hospital and HH and this works extremely well for me.

If you ask for a referral the your local hospital are legally bound to do that, it is whether you would be able to travel, as I get no help financially or otherwise for that.

Keep in touch and let us know how you get on and good luck

Des

Hi Des,

When I think about all the choices we have dealing with CML - on meds - on what's tolerable or intolerable - on how much pain we can withstand - on the numbers or trends - on how everyone lives their life - there can never be a "stupid" decision. Every patient must decide (and I'm only care giver/guardian/current decider for my minor son) for themselves what is most appropriate.

What I've truly learned is while CML is a common thread we share, dealing with it is a very personal decision that really can not be questioned. All we can do is gather as much information as possible and then punt - I'm using a US football analogy.

So, your decision here is a good one as long as it's right for you.

I wish you the very best and hope you can keep us all apprised of your ongoing success!

Tracey

No other hospitals in Northern Ireland who deal with Cancer & referral outside, to G.B. are refused by Health Board. I have asked for referral & Belfast City Hospital are not legally bound to do it, it is not a question of travel. As for what my PCR was, I have never been told, my blood results were always said to be "good" (apart from when my I was given a Glivec holiday, shortly after starting Glivec)

Belfez

Dear Des,
Thanks for sending your update. I really support what you are doing and I know that your decision to do this has not been taken lightly.
It is important to stress that stopping any therapy for CML should only be with the support of an expert centre and it is great that HH and Dr Marin are confident that you should try.

The next 6 months will be interesting to say the least ;o)) and hopefully you will maintain PCRU status.

Best of luck,
Sandy

Dear belfez,
Your situation is unacceptable. Without Glivec you will be at risk of your CML progressing. The bone pain should have subsided by now if it was a side effect of Glivec. PLEASE try to see your doctor and tell them that you are suffering and need to see a CML expert. If your GP is unsympathetic I
strongly suggest you contact your local MP and book a face to face meeting so you can ask for his/her support for your immediate referral to a specialist CML centre. The most convenient would be Liverpool Royal and Professor Richard Clark.
Your local health board should be challenged and asked to reveal the reasons for their refusal to refer. I suspect it is cost but according to the Dept. of Health no patient should be refused care on grounds of cost.
Please do not give up on getting the correct treatment and support.

How long have you been taking Glivec? Your are NOT too old for a transplant but that would need to be done at an expert centre and you would need a good HLA matched donor.

If your side effects from imatinib (Glivec) are intolerable you should be offered an alternative.... either Sprycel (dasatinib) or Tasigna (nilotinib)... both these 2nd generation TKI's have different side effect profiles and I am sure one of them would be right for you. In order to get one of these drugs you need to get to a specialist CML centre... such as Liverpool or as Des suggests Hammersmith in London.

Sandy

New cancer centre opened in Belfast
...click here

"The Centre aims to be a world leader in developing treatments tailored to individual cancer patients based on understanding the biology of the disease and how that varies among patients.

Collaborations - a cornerstone of this virtual Centre - will focus on identifying new targets for cancer drugs, understanding how genes can help predict which treatment will be most effective, and developing specific new treatments that have fewer side effects.

The Centre is a partnership between Queen's University Belfast, the Northern Ireland Health and Social Services Central Services Agency's Research and Development Office, Belfast Health and Social Care Trust and Cancer Research UK.

Cancer Research UK already supports research in the region but with the launch of the Centre, this contribution is set to increase to £2.5 million a year. The Centres initiative is an important plank in Cancer Research UK's 5-year research strategy."

Sandy

Hi Des,
I have been on Gleevec for 5+ years now and have been Ph "undetected" for at least 3 years. The test in South Africa was only developed 3 years ago and my first result came back as "undetected"
Unfortunately I suffer from a number of side effects with eye bleeds a major problem.
In the past an eyebleed would only last for a moment but the resultant damage would take a few weeks to clear up.
Last week I had an eyebleed which continued for a week.
I advised my Haematologist and together we decided that I take a break of a month long to give my system a chance to recover.
I am now into my 4th day and my bleed has stopped and my eye is fast recovering. I already feel better but the eyelid oedama is still there. My eyesight is stabalizing and I can once again tolerate my specticles which are only a few months old.
I am keeping a diary of events to record my findings.
I will be seeing my Haematologist in two weeks time to discuss the way forward.
I know how you feel and I did not take this decision lightly.
Good luck

Dear Basil....... hope all is resolved with your break from imatinib. As you have been pcru for 3 years maybe, if this break pans out ok, you would consider a break for longer trial period given that you suffer badly with side effects? OR maybe you could consider a change of therapy to another TKI as they have different side effect profiles.

Sandy

Thanks Sandy,
I will be discussing going forward when next I see my Haematologist in a couple of weeks time.
But the difference in state of mind and physical is already fantastic, but even with all the side effects of Gleevec thrown in, it still beats the alternative.
So yes, everything comes at a price.

Basil

I was just wondering how you are doing one year on from deciding to come off medication? Can you update us please?

Beth