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On the road to a transplant with a (3;21) translocation

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Hello, 

I found out yesterday that I am starting the progress to have a transplant.

I was daiagnosed august 2020 and have since failed on Imatinib and Dasatinib… with my BCR ABL never going below 16%.

We found last week that I have an additional translocation, specifically (3;21) which automatically classes me as accelerated phase.

Just started on Ponatinib next had a chat with the Anthony Nolan nurse who took my blood and details to start the SCT initial process.

I am based in Leicestershire at the moment and at the LRI, and my consultant has been down right amazing, Dr Anna Tsoulkani. However, just about to move house and will be transferring to Nottingham under the care of Jenny Bryne who is one of the uk CML experts.

I would love to hear from anyone else who has experience of this or to any Uk blogs of people who have been through this too etc.

Also thought also that I would post as I know I am a minority and most people are lucky enough to be treated with a TKI. But when searching this site it was hard for me to relate to most others stories.

(As an aside when searching the forum on mobile can you filter the search by date? As we know so much has changed on the last 10-20 years it would be useful to be able to see recent messages 1st) 

Thankyou! 

 

Jenny Byrne is an excellent and supportive clinician (and an expert in CML). From what I can understand t3;21 is extremely rare translocation in CML, so hopefully you can move your clinical care to Nottingham and Jenny Byrne very soon.

It my well be that you respond better to ponatinib, let's hope for that. 

Do you have an HLA matched donor identified? I assume not as you have only just been referred to the database (Anthony Nolan) for donors?

I am one of the few people on this forum who has had a transplant - back in 2003 - but only after I had managed to get my CML back into chronic phase via imatinib (600mg) - I had been on a clinical trial and responded for just over 2 years.

However, I started to lose my molecular response after that because of an imatinib resistant mutation, so went ahead with a reduced intensity stem cell transplant at Hammersmith. I had a well matched sibling donor.

As you have mentioned, the majority of patients do respond well to one of the currently available TKis, so patients like you with complex disease are rare.

Jenny Byrne is a member of the NCRI CML Sub-group and will understand the best treatment options for your case. There is another TKi on the horizon (asciminib- Novartis) which will soon be assessed by NICE for second/third line use the NHS. It may be available via compassionate use but I am not sure and that would depend on the clinical assessment of your disease. The reason I mention this TKi is because it targets a novel pathway and may well be useful in more complex disease.

Please ask me anything about what is it like to have an SCT and I will try to advise you. 

Best wishes,

Sandy

Hi Sandy

Thankyou for your detailed reply. I had read about your history from other posts in this forum, it’s encouraging to hear of great positive long term outcomes.

I am due to move house shortly, thus the transfer from Leicester to Nottingham, so as soon as this is complete I will be under Dr J.bryne. Although like I said before my care via Dr Anna at Leicester has been exemplary and she has referred with J Bryne re my case as a second opinion for me, which I really appreciate. 

It’s interesting to hear about the potential new drug Acinimib, and is good to know about should the Ponatinib fail.

Either way as I am only “young” being 41, even if the Ponatinib works great I can not stay on it due to the serious possible long term side effects of potentially taking it for another 40 years! 

I have only this week had my blood taken to look for a HLA match and so my brother can be checked too. So fingers crossed I find a good match and then we are hopeful we can start the process in early spring should all be ok.

Thankyou again for your reply Sandy and I will keep you updated. I am feeling really positive at the moment and I know it will be a hard journey I am ready for the fight! I am thinking of starting a blog or something along these lines as I have found it hard to find British CML patients who are going through this too.

I do want to stress though, as Sandy also reiterated above, I am a RARE case and most people with CML will achieve excellent results from the TKI’s and will continue to do so and have a normal life expectancy etc, so please don’t be worried by my story. I just wanted it to be here for the few % of unusual cases.

B