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Hello and a question

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Hello,

I am a late middle aged female who was diagnosed with CML Ph+ in March 2017. Responded well to first line treatment with Nilotinib for two years, until the side effects became too much for me.

After some persistence on my part, I was switched to Bosutinib and maintained DMR3, reaching DMR4 in November 2020.

2021 was a disaster. Due to a nightmare series of avoidable and complex events, I ended up losing remission and went right down to MR1.

Via my persistence, I am now on Bosutinib 500mg and regained DMR4 at the start of January this year. I had to fight off pressure from my consultant to take Imatinib last year. The SE list is too close Nilotinib and disease resistence figures for that drug did not give me confidence that my best interests were being considered

I am being treated at an Oncology centre at a large local hospital, but it is not a specialist Leukaemia/CML centre.

Due to the traumatising nature of my experiences last year, horrendous fatigue, being shut down when I ask questions and given provably incorrect information by my consultant, being treated disrespectfully and with only a random chance of seeing the one Registrar who is respectful and listens to me at consults, I have lost all confidence in being treated at this centre. I can no longer deal with the CNS allocated to me as I have lost all trust in her competence.

I am looking for a list or map of all the specialist CML NHS centres in the UK, to explore the possibility of being treated out of area.

Does anyone know where I can find such a list?

I was reading so many sites last night on this phone, I failed to save the glimpse of the list/map that I did see. I thought I may have seen it here, but not sure now.

Could anyone help please?

Thank you for reading, I hope all are doing well.

Sounds like you have tried advocating for yourself and may need someone to advocate on your behalf. I'm from Canada so can't be of much help, but I did find this

"If you would like more
information, email our
Advocacy Caseworker
at advocacy@
leukaemiacare.org.uk
or call 08088 010 444"

Strange that you cannot find a list. I do not see a specialist but I was able to quickly find a list of all specialists in my province after a quick search.

As I'm newly diagnosed, not to prod, but what led to your loss of MR4? Just adherence to treatment?

Don't beat yourself up about it. Every CML patient understands the importance of this but sometimes life throws us curveballs or something gets in the way. The doctors you are working with should understand. You seem well informed and commited to your health for the future. Hang in there!

Hi Tapper11

Thank you for replying.

Leukaemia Care Advocacy suggested that I look to continue out of area. Hence me pursuing that idea. They weren't able to provide me with a list of specialist centres, just other hospitals in my area.

I can't go into much detail about the loss of remission, suffice to say, that I have never missed a single dose of either Nilotinib or Bosutinib and have always taken them exactly as instructed, as per the correct conditions (fasted or with food, same time of day, with water)

TKIs are potent, game changing drugs for CML. Drugs, that have allowed me to stay alive! But, via much reading and listening to other patients, it seems fairly common for doctors to play down/ignore side effects and in my case dismiss the significance of a well documented adverse event and to refuse me access to further investigation, that they themselves had suggested organisaing.

Formally notifying my concerns to the hospital via the correct channels has, I believe led to the breakdown in the relationship between myself and the team members who played a part in the whole, traumatising disaster.

The NHS can be wonderful, I have experienced it at its life saving, very best. But when things go wrong, they can go seriously wrong and accountability is impossible to find.

Thank you for your suggestion and compassion :)

If you click the "Patient Info" tab at the top of this page the second item on the drop down is a list of specialist CML Centres. I believe you can ask your GP to refer you to the most appropriate of them.

AlasatairC,

Thank you so.much, this exactly the page I was looking for.

Kind regards

Hi, not sure where you live ,but don't go to The Royal Liverpool.Their clinic is awful you wait for hours past your appointment time and the two specialists I saw there were absolutely horrible .So I don't go there anymore , no way .

Hi Felix,

Thank you for the heads up on that one :)

Really appreciated :)