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partner has cml

hi

after a blood test came up abnormal my partner went to the heamotologist to have cml confirmed as a diagnosis, he had more blood tests and his wbc was 183 in the last two weeks it has risen to 204..his platelet count 500 , it was confirmed and today we went for more blood tests, an ecg and picked up his perscription for a tablet to do with acid and a tk inhibitor which is a variation of gleevec starting with "n" (i havent got the packet with me at the moment but can find out) today i just found out tk inhibitors are oral chemotherapy...i had assumed they were two different things, my partner has been advised to freeze his sperm as there is a fertility risk, he's only 26 and is having tiredness, a slightly enlarged spleen and a constant tickly cough he cant seem to get rid of.

I've been lurking and reading on here and before today i had the perspective cml is similar to diabetes..take a tablet every day and its manageable...

today we went to the mcmillian cancer unit/ward and when the doctor said he had an intermediate risk of potentially not reacting to treatment i felt in shock... i assumed with him being in chronic phase that the tablets would just stop it progressing and it would stay how it is. He seems to be taking it better than i am which i feel a little guilty for as emotionally i've been tearful etc and its not even happening to me..hes been so brave and calm/laid back. i take a book with me to the appointments to make notes but some of the medical jargon is a bit too much for me at times, i know he has the philadelphia chromosone but wondering if anybody had any recommendation of questions i should ask that are not in the faqs?

he hasnt started the meds yet but from anybody reading this that does take them...is there anything your friends/ relatives do that can make things better/ easier/ more comfortable for you?

is there anything he can take that might help his fatigue/aneamia along with meds?

the nurse we have has been so lovely...just trying to take deep breathes and stuff... next appointment is in two weeks.

thank you anyone for reading x

steph
24/f/north west

Steph, first of all, i'm sorry about your partner. Second of all: he will be fine. i think he'll use nilotinib wich is a second generation TKI with great results. The fatigue is probably caused by the cml itself and maybe it get better with the treatment. many patients still have fatigue even with the treatment but it get better. i'm 8 months post DX and i'm doing fine. cml is not the biggest part of my life now and i'm much more relaxed even my results are not the greatests. About the intermediate risk, this is good. even high risk is good - i'm a high risk and doing good. i'm on glivec and they told me that - for my group of risk - i had 70% of chance to achive a complete cytogenetic response with the standart dose. now it's time to take a deep breath and face this new reality and make sure that your partner take his medication everyday. adherence is the key for a successfull treatment.

take care,

Lucas

Hello Steph,

Lucas has said several good things and I'll add a few more of my own. Firstly, don't panic; the early days are the worst as it's difficult to know which way is up. In time you will both become more comfortable with CML and living with the disease; in truth I forget about it most days.

Secondly, watch this:

http://www.patientpower.info/video/love-and-medicine-conquer-cml

This was me aged 33, 12 months after diagnosis. I'm now approaching my 4 year CML 'anniversary'. I live a normal life on Tasigna (Nilotinib) which it sounds like your partner is being prescribed.

Thirdly, read this:

http://www.nccn.org/patients/guidelines/cml/index.html#1

Although this is an American publication I think it is one of the best sources of information for the newly diagnosed.

I'll try and hit the key points you raised in order:

In addition to the Tasigna your partner is likely being prescribed allopurinol. This helps relieve the the levels of uric acid - as the Tasigna 'kills' off the leukenic cells, this ensures the uric acid levels are kept low. He will likely only be on allopurinol for 4-8 weeks(ish). TKIs aren't technically chemotherapy, many pharmacies or non-specialists will state they are, but they really aren't.

Fertility - there is a debate going on in another thread about this. Currently there is no evidence of fetal abnormality from fathers who are taking TKIs against the normal population. I fully intend to father kids while taking Tasigna; however, TKIs may reduce sperm quantity/quality. If you have an opportunity to freeze sperm prior to starting TKIs then take it; if you don't have that chance then, based on current evidence, don't worry about it too much. Further down the forum page there is a whole discussion on the subject.

In most patients CML is very treatable and as Lucas mentioned, as long as the tablets are taken every day then it can be likened to diabetes.

Tiredness is a symptom of CML and his body is working hard at the moment, there's not a lot he can do other than take it easy for the first 1-2 months. On the early days of the meds he may have some side effects - these will probably settle down with time. I recommend a good balanced diet, gentle exercise and plenty of water. He may need a nap here or there and general love and support. It is often more difficult for loved ones then the patient - my wife would agree with this statement.

I don't buy this 'intermediate risk of not responding to treatment' - unless your partner has something extraordinary going on which you've not mentioned i.e. mutation etc. then CML is incredibly treatable. There are 5 TKIs which can be potentially used so even if Tasigna does not work out for some reason (and there's every reason to think it will) there are other TKI options. My advice is to only talk about CML treatment with CML specialists; I would recommend when you next see the CML specialist you ask about the 'intermediate risk' comment - they should be able to provide reassurance. Shortly after diagnosis I had a non-specialist tell me I had a 50% chance of living 8 years - this is based on old data before TKIs were invented, but proves the point that non-specialists do not have the latest data and info on treating CML and caused me unnecessary alarm.

So, in summary have a look at the video and NCCN guidelines/info and then please do come back with any questions. I strongly recommend attending the patient seminar on 11 Oct - these are a great source of information http://www.cmlsupport.org.uk/node/8308

CML is incredibly treatable and there is every reason to think positively about the future.

Best wishes

Chris

hi, chris, i believe the doctor was talking about the sokal classification (low, intermediate and high. old classification from the 70's or 80's i think). some doctors still believes that it's a valid classification - and some use for clinical trials. Altought, TKI are so great that even most of people with high sokal -or other classifications, like hasford score - can get great results. I remember my doctor told me that - nowadays - sokal is more linked with time to get to CCYR.