I was recently referred to King's as my BCR results have never dropped below 1.5.
I started on Glivec but had liver issues, went onto Dasatinib (which I am still on) but regularly have breaks as I get pleural effusion and have tried Nilotinib but the side effects were too severe to continue.
At King's I was told that I should be looking at a BMT as my results meant that I was more likely to go into accelerated phase than others. I asked to try another drug and was referred to Hammersmith for Ponatinib.
At HH today I was told that I should not be worried and I certainly should not consider a BMT from an unrelated donor as there really was no evidence to show I was at high risk of going Into the next phase. I am now waiting to get Ponatinib on a trial.
Two hugely varying ways of thinking from two respected hospitals, obviously I do not want to go down the road of a BMT so I am following HH's advise but have other people had similar issues?
K
You are here
Differing opinions
My husband was told that he had failed Glivec as he had only got to 2.5 after 2 years and the only option was a BMT. He insisted he was referred to HH and was told by HH that he was just slow at responding and went up to 600mg of glivec. Now after nearly 9 years he is 0.009. Its always best to get a second opinion.
Dear Karena,
You were right to question the advice you were given and ask for another TKi option before agreeing consider transplantation.
A PCR ratio of 1.5% that has stabilised at that figure does not necessarily indicate that you are more likely to progress- it indicates that you are more likely to be a slow responder or, as in you case, that there are issues that have caused you to stop and start therapy.
If Kings were basing their opinion on a mutational analysis- ie if they had identified the T315i mutation that is resistant to all currently available TKi's apart from ponatinib, or if your labs had shown some other form of 'resistant disease', then their advice would be understandable.
However, from what you say this does not seem to be the case.
HH does treat far more CML patients than other centres and maybe they get the more difficult cases too. Also there is no denying that they have one of the most sophisticated labs in the world and their research/clinical trial portfolio is second to none, at least in the UK.
This is not to say that Kings- or any other CML centre- is providing a lesser service to their CML patients.
However, if a case is more complicated in any way- as in your case by TKi intolerance rather than resistance- then better to be at a centre that can give you more choices.
Kings were right to refer you after you requested another TKi. Perhaps other centres would not have done so.
Good luck with your trial of ponatinib- I hope this solves the side effect issues you have had- especially pleural effusion.
Please update us as you go on- it would be interesting to hear if you find the side effects from ponatinib are less of a challenge. BTW- what were the side effects that caused you to stop nilotinib?
Best wishes,
Sandy
Many thanks for both comments. I must admit I was scared after my appt at Kings and a lot happier after HH!
My bone marrow biopsies always come back clear and I have no mutations so other than my BCR not dropping below 1.5% I am pretty well.
On Niotinib I had sickness,rash, itching, severe migraine that meant I could not move from the sofa for a week, slurred speech, confusion and towards the end just a slight hint of the elephant man as my forehead started to swell quite impressively - not the most fun I have had!
I have to wait at least 2 months before I can get the Ponatinib but assuming I get it, I will post an update.
Many thanks again
K
Hi karena.... what will you be treated with whilst you are waiting for ponatinib to come through?
Sandy
They are going to try 70mg of Dasatinib to try and reduce the pleural effusion and to keep me going
K
Good! I hope you can better tolerate this dose. but it is good to hear you are not without therapy while you wait for access to ponatinib
best of luck,
Sandy