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New to cml could do with advice please

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Hiya my partner was diagnosed with cml 4 months ago he point blank refuses to talk about it or ask questions about it which I understand is completely reasonable,  Howe fee on the other hand I want to research it and know everything I can to help him through this .... 

He was started on imatib 400 once a day and suffered with leg pains as a side effect we managed that with hot baths heat pads and pain killers .

he has not long had a set of blood tests and has just had a letter back saying his bcr levels are 49% which are higher than they would like and will discuss this further at his appointment in two weeks ... 

now as he does not want to know anything he has thrown all the information away the doctors have given to him and are at a massive loss as we don't know what it means, we understand that as he's only 39 the doctor will not be changing his tablet for a while as his white blood cell level is down to 4 (if I understand correctly) 

basically I was wondering if anyone could help in layman a terms what it means by his bcr level at 49% means please 

sorry for the long winded message but would appreciate any advice and Information you could give pleasecheers Kym xx

 

Hi,

His latest test has shown his BCR-ABL % level has reduced to 49% - The European Leukaemia Network (an organisation of expert CML clinicians) recommendations for optimal treatment  response for treating CML patients with TKI therapy - in your husband's case, imatinib - should see the % level of BCR-ABL (the fusion of two normal genes, no. 9 and no. 22 that causes CML) should ideally be below 10% at 3 months from start of treatment. 

That is probably why his doctor has said that he/she is not entirely happy with your husband's initial response to this therapy. There could be several reasons for a less than optimal response at this stage in his treatment. One cause may be that he has an issue with adhering to daily therapy, which to put it simply means that he may not be taking his tablet every day- preferably at the same time- It has been shown that if a patient is missing more than 2-3 doses of their therapy over a month then it is unlikely that they will not achieve an optimal response and have less control over their disease in the longer term.

His doctor will probably want to confirm that adherence is not an issue in his case before recommending any change in therapy... If his doctor is satisfied that your husband is taking his therapy as prescribed it might be that he/she will recommend a change in TKi drug.....there are 5 TKIs, including imatinib, that are currently available.

TKI therapy is highly effective in controlling CML for the longer term and the majority of patients diagnosed in chronic phase will respond to one or other of drugs and live out their normal lifespan. 

It is a hard diagnosis to come to terms with - no matter what age - but particularly for younger people. Please read our CML Facts page and do as much research as you can- you can ask for advice on this forum which hopefully will help you support your husband and yourself at this very difficult stage.

Sandy

Hi there,

I was diagnosed in my mid thirties. Not the kind of thing you expect, is it?

49% at 3 months is not brilliant, but sometimes slow and steady wins the race. I was 76% at 4 months, and now around 0.01% (almost 5 years later) so things can change. One of the reasons I was slow to respond was that I had severe leg pains in the early months. Mine were so bad I couldn't walk - but other people frequently find imatinib gives leg pain which does go away after a few months. In the end, I changed from imatinib to dasatinib which helped in that regard.

David.

I agree with David. I was 41 at diagnosis last year, my 3 month results were "sub optimal" but my 6 month results were fine and I achieved undectectable very fast (10 months).

There are about 5 different compounds which can be used to treat CML, imatanib is only one of them. If he has been taking the meds daily then its time to think about either being more discplined or switching to a different compound. For the first 3 months I switched a lot between taking the med at lunchtime and at dinnertime, I didnt know that the time variation could be a factor, after my 3 month result I was very careful to take it at the same meal every day and my results were better.

 

Hello Kym,

I will not add to what other members of this forum have contributed but perhaps would wish to comment on the issues of "coping" and "support" when diagnosed with a condition like CML.A while back I mentioned to my specialist   that I belonged to this forum and how useful it had been to myself and he was interested;he said  that mutual support following a diagnosis is vital and that still for many being told one has CML is a life changing event.

Prior to 2002 or perhaps a little earlier CML was a fatal disease and it was only with the introduction of TKIs did it for many become a manageable condition with no real impact on ones projected lifespan.Glivec was called the golden drug or the new magic bullet for cancer therapy.

Eleven years ago on diagnosis I was not aware of TKIs and I thought that I would only live for a short period and I prepared myself for it but I was surprised ,very surprised at the impact that medical research and drug development had on the possibilities for survival.

Upon diagnosis with many serious illnesses it is not uncommon for there to be"denial "being shown by either the patient or in some instances the partner or the family or friends.I had support from my employer who offered unlimited sessions of psychotherapy and after two major and long discussion sessions that was enough to be then able to cope;family and friends did not understand my condition nor did my GPs and they all talked of how long I would last and what support and nursing services I might need.However that was not the case and I coped and dealt with it in a capable manner.However in the first 3 months of treatment I do did not respond well and the specialist  said that "there might be cause for concern".;eventually this concern declined.

I have a suggestion that you attempt to engage with some of the medical professionals who are there and capable to offer support and help and advice to your partner and to talk it through and to rationalise both of your concerns ;as has already been said for CML the treatments are there and available, unlike for some other blood cancers or for some cancers in general.

There is a whole area of  work  in medicine and for CMl in particular that I put under the heading of support and help/coping that would match the current situation you face and the denial that is being shown-worth a new thread sometime perhaps.

With best wishes

John

Hi Kym, I was diagnosed in April. I think denial is a perfectly appropriate response to this disease! As lucky as we are, that this once-fatal disease is now manageable, it is a strange in-between world that we are in. We don't have obvious outward symptoms as many cancer patients do, but we still have a serious disease. I have found that when I tell people I have leukemia, they are absolutely gobsmacked and don't know what to say! It is very important to me to have a forum like this since it's such a rare and misunderstood illness. I agree with John that trying to find support (for you, certainly, and for your partner when he is ready) is a good thing. Otherwise we feel very alone and isolated because nobody understands! Also, it is hard to learn and understand all the blood tests and progress so I share your frustration in that area. All the best to you going forward. Justine

Hi, I was diagnosed back in 2003 and it took me along time to come to terms with it and I to had a slow response to glivec , I was put on 600 mg and that has worked its magic . Hope you are ok too I know it's very difficult for partners to deal with too xx