You are here

New Diagnosis - please help...

Hi. My brother (36 yrs) was told on Friday (15.3.13) that he has CML. He has a bone marrow aspriation tomorrow and further opportunity to talk to someone and I will be going with him. He had a blood test as a result of abdominal pain which we now know is due to an enlarged spleen. In his first conversations with staff, they haven't mentioned drugs at all but have gone straight to talking about chemo and bone marrow translplant. He is at GWH in Swindon.

Can anyone tell me why this would be the case when I have read about Imatinib in many places and seems to be the standard first line treatment everywhere. Is this a case of it not being available at that hospital? Could it be because he is in a more advanced stage?

I would like to be pre-armed with the possiblities before we speak to someone. And if anyone is able to recommend questions to ask, I would be very grateful. Lastly, by his own admission he is rubbish at the technical/medical stuff which is why he has asked me to come with him. Is there any way that we can have it noted that I can ask questions on his behalf?

Sorry if you get questions like this all the time.

Katy

You should take a look at Sandy Craines notes from the UK CML Patient Carer Day. There is lots of useful information here. This is the direct link to it:
http://www.cmlsupport.org.uk/sites/default/files/National%20UK%20CML%20S...

You can see it on the CML Forum pages. Summary:National UK CML Patient/Carer Day. Dated 10 Dec (last year). It clearly says in the intro notes on page 2 that Prof Clarke rarely recommends BMT nowadays.
"Prof.Clark was keen to point out, that he no longer recommends transplant for any patient
diagnosed with chronic phase CML and is unlikely to do so other than in those rare and
complex cases resistant to all available TKI therapies and those with blastic transformation.
In other words in rarer and more complex cases."
Hope this helps.

Katy,

Unless your brother is in a really advanced stage of the disease then BMT will likely not be the route to go down.

Without being narcissistic watch this video I did 18 months ago. your bro and I are a similar age.

http://www.youtube.com/watch?v=YzX9OEXfLAQ&feature=youtube_gdata_player

Make sure your dealing with a specialist haematologist/oncologist - key question is to establish which phase your brother is in: chronic, accelerated or blast.

Let us know how you get on and please come back with any questions.

Chris

Sorry to hear about your brother.
I was diagnosed somewhat the same way. I had painfull/tender area on my stomach which later turned out to be my spleen, i was 37 years old at the time. My white bloodcell count was around 260.000 (290.000 at its highest), and my spleen was huge, which my doctors at the local hospital found very interesting, and everyone wanted to feel my spleen. Anyway, they told me i probably had Leukemia, and to go home and wait a week, cause Easter had just started, and there were no experts at the hospital at that time. So, i waited 1 horrific week, went back, and was told i probably had CML, and then i was sent to a hospital which had CML specialists. When i reached the specialist hospital i was greeted by a nice onc, who told me i had the "best" kind of leukemia, and that i could "just" take a pill and it would be allright.
Now, almost a year on, and the Imatinib(Glivec) is working very well for me, and the side effects are very manageable.

If i were you, i would talk to someone who has treated many CML patients before, and one that has a good understanding of the disease.

Chemo and BMT`s are usualy not used for CML, but if someones white bloodcell count is very high, then they might recieve a type of Chemo called Hydroxyurea to get the wbc count down fast before starting the TKI. BMT is a last resort now a days, and is almost never used for CML patients here in Norway, allthough ive heard about some people recieving a BMT other places.

I hope you find some comfort in my story, and i wish you all the best, and know that most patients do very well on TKI treatment.

Teddy

Hi Katy, please update us when you have more detail about your brothers white cell count and whether he is in chronic phase, accelerated phase or more advanced disease. It is unlikely that any CML doctor would advise a BMT or 'chemo' to a newly diagnosed patient in chronic phase. First line treatment is with one of the targeted therapies called tyrosine kinase inhibitors and he should be offered either imatinib (Glivec) or nilotinib (Tasigna)- nilotinib is a 2nd generation drug and is proving to be more potent in newly diagnosed CML with faster and deeper responses.

Let us know how the consultation goes and we can advise further.

Sandy (from a very snowy Berlin! and hoping my flight back to London is not delayed)