New to forum - MDS/AML refractory to treatment

[jenni-fleur]

I'm new to the forum, hoping to meet some more people in a similar situation and perhaps some advice where to go from here.

My journey into bone marrow failure began when I was 9 years old and developed severe aplastic anaemia after being treated with chloramphenicol. I had ATG and cyclosporin and entered remission the next year.

There I remained until last year, when at 22 years I was diagnosed with myelodysplastic syndrome, most likely secondary to the AA/treatment. I am consistently told this is very rare in young adults and feel this has had implications on my treatment as there is no obvious, well-trod way forward. I was trialled on lenalidomide, and the search began for a bone marrow donor.

March this year I was told it had progressed to AML. I have no matched donor. I have been on AML induction chemotherapy, but unable to achieve a complete remission. I also now have CNS disease. Been told there are no more options than supportive therapy and this has shattered me. Ironically I feel more well than I have for a while. I'm not prepared to die so young.

I was wondering if anyone else had experience of MDS/AML refractory to treatment? Also looking for doctors/hospitals/departments worldwide if necessary who might be able to give me some more hope? Or perhaps I need to accept this and am wishing for something I can't have. I don't have a close family so sometimes feel I am fighting this alone and would love to hear anyone in a similar position (be that AA, MDS, AML).

Thank you.

[Lisa Z]

Jenni-
Don't give up hope. Is there any way your doctors at home can contact the doctors at the NIH? (National Institutes of Health), in Bethesda, Maryland, USA? It is our country's largest research institute and they do lots of clinical trials. Perhaps your history would allow you to qualify for one.

[Debbie W]

The name and hospital that I have seen mentioned here is Professor Mufti at Kings Hospital in London, not sure if you have already been seen there or not.

http://www.kch.nhs.uk/news/archive/2...0th-procedure/

Hope they can be of some assistance.

Best regards,

Debbie

[squirrellypoo]

Hi Jenni-fleur.

It's always so nice to see other patients in the UK! My story is a similar one to yours - I had AA as a child and then recently developed hypo-MDS as an adult, but I was very fortunate to have a matched unrelated donor and have since had a (very nearly) full recovery from my bone marrow transplant last summer.

I second the advice given here to get your doctor to refer you to Prof Mufti at Kings. Besides being one of the world's leading experts on MDS (and his colleague, Prof Marsh, who is also at Kings, is an expert on AA), he is a truly lovely man who will give you hope and make you smile again and just want to give him big bear hugs. You really mustn't give up hope - keep fighting, and get the experts to steer you towards the best treatment options.

melissa

[tytd]

Hello Jenni-fleur,
I agree with Melissa and Lisa. Please, if you have not already done so, try to get to a center like Kings College in London that has expertise. Don't give up!! If you need names of other centers in USA, let us know. What is your blast count in BM? Have you been tried on Vidaza as a bridge until you can find a donor match? I know Vidaza was not approved by NHS but should be available in combination with other drugs in a clinical trial. If you are too sick to search for clinical trials, try to get someone close to advocate for you. Good luck!

[jenni-fleur]

Thank you all so much for your kind replies and messages not to give up hope. Has been a hard couple of weeks with things moving quite fast in the wrong direction and referrals to palliative care etc. Kind of hard to get your head around things when your body just starts failing.

Lisa and Debbie: If I'm well enough to fly I'm going out to Texas to see if they can offer anything - nervous but I suppose kind of excited as don't really feel I have anything to lose at the moment.

Melissa: So lovely to hear from someone else in the UK and in a very similar position (well not lovely you have to go through this too, but I hope you understand what I meant!). Thank you so much for the encouragement not to give up hope, must admit I'm finding it hard. So glad to hear things have been pretty successful for you, hope you get to full recovery really soon!

tytd: Thank you for your advice and offer for details of other places too. My BM blasts are about 20% (last BMB 6 weeks ago though). Unfortunately my CSF blasts are also at 20% (1 week ago) and that is causing a lot of unpleasant symptoms. I haven't been able to go on Vidaza yet, but really hoping Texas might be able to get me started on it. Not sure if it's too late though now I've got into AML?

Thank you all so much for your encouragement and support, really appreciated.