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Acute Phase

I have not posted a lot but Dad has had CML for over 4 years.  He started on a trial drug - not sure of name - with the Beatson clinic in Glasgow.  This was in July however it has not been successful and he is now in the acute phase and we have been told to prepare for the worst with in the next few weeks to months.

I am so unsure how I feel about it as I see him a lot and notice that he is not himself but to me he doesn't seem anywhere near dying.  He does not want to know how much time he has been given and so we as a family have to go on as if we don't know any of this although I think he knows within himself.

I know that there is not much anyone can say but I just needed to write it down and maybe talk it through with some who may understand.

Thanks for taking the time to read.

I am sorry to hear your dad did not respond to his therapy. Another member of this forum was recently told that her disease had progressed and a transplant was planned- however even high dose chemotherapy drugs did not get the blast cells down to a low enough level to go ahead with the transplant and she was sent home to prepare her family for the worst. HOWEVER, she was given dasatinib (Sprycel) which is one of the 3 TKI's used in the UK and the only one that is effective in some patients that are in Blast phase CML. This drug worked in her case and she managed to get back to a second chronic phase- with low enough levels to go ahead with her transplant.

In your Dad's case- without knowing any detail it is hard to advise you. I assume he is treated by Prof. Tessa Holyoake at Glasgow- or at least she is aware of his case? Very rarely there are people who's disease is complicated and they do not respond to any of the 3 TKI's. 

CML is a very difficult disease to treat in the blast phase- but as I said above dasatinib can be effective in some patients but that might have been the drug he was being treated with- is there a way you can find out the name?.... - depending on his clinical 'picture' - he might well respond to a new drug called ponatinib- which is still in clinical trial.

It is a difficult situation for you and your family, I do hope this is of some help

Best wishes,

Sandy

Yes he was treated by Prof. Tessa Holyoake.  She had to push very hard to get him on the trial as all other drugs were not effective.  He was treated for less than 6 months on the trial drug during that time he was also told he has another condition going on which I can't remember the name of at the moment and so I think that by treating one it affects the other.  He has no other option for treatment so we are preparing for the worst.  I just wrote to express how I was feeling.

 

Thank you so much for taking the time to reply.