How did you get involved?
What was the experience like?
What advice would you give to others?
Feel free to share your experience with others 
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Im currently on the mahogany trial, which combines tablets and chemo
Lenalidomide tablets for 3 weeks and 6 cycles of chemo (1 per week for the first cycle then every 4 weeks) with retuximab i was invited on the trial after relapsing 12 months after finishing my first treatments finished
Feeling very fatigued and also nauseous during my trial ive just finished my 1st cycle so hopefully things will be easier going forwards definitely see a reduction in my swellings which is a good sign
So far all in all the trial has been hard but good jyst hope it continues
Will update on here as my trial progresses
Best wishes to all who are currently undergoing treatment
John
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Hi @Parmy63 welcome and thanks for telling us about your trial, please do keep updating us.
Really look after yourself
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Unfortunately for me today after a 16 month journey the only option I have is a clinical trial.
I have a consultation next week with clinical trial consultant, after which I will have a month to wait before my slot.
On the 6th of June 2023 I was diagnosed with Acute myeloid leukaemia (AML) + RUNKS1, blast 40%. I was responding very well to treatment, blast was 0 after 1st round of chemo with mutations being monitored. However after second cycle of chemo my mutation count went up. The Royal Marsden advised to look into transplant, my consultant ignored that and carried on with 3rd round and 4th chemo cycle. After the third round my mutation was still visible. After the fourth round I was not given a bone marrow test, but I was told I was now in complete remission and sent home with a good 30 years ahead of me to live.
It took only 2 months for me to be back in hospital with 40% blast and now with two mutations to deal with. From there I was on a journey to a transplant. I am incredibly lucky to end up with a perfect sibling stem cell match harvested in August 2024 and now waiting for me.
However I can not have it. Fully under control of RM in March 2024 I started my preparation for transplant. After two FLAG IDA’s I had 15% blast. This was followed by another intense chemo session and targeted therapy.
Following on from this targeted therapy, today I had a consultation with my RM consultant to review my bone marrow result. My cancer is at 90% blast. I am truly surprised that I move around as easily as I do. My husband, my sister (my perfect match donor) are struggling to breath, so do I.
I had a year when I had 0% blast, but now its gone.
So it is clinical trials for me, apparently even in my very dark situation there is hope. It would be great to hear from someone who has been through something similar and is still here today to tell their story.
Kind regards and best wishes to all the warriors out there.
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Hi @Karpeta I have responded to your other post.
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Update
A slight setback in my lymphoma treatment my white blood cell count is low having to have 3 injections to try and boost it. my chemo and tablets are now on hold for a week just when I thought things were going well hopefully only a small bump in the road. side effects have been quite bad constipation nausea insomnia fatigue and irritable
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Oh @Parmy63 i am sorry to hear about your slight setback and side effects.
Have you spoken to your clinical nurse or medical team to see if they can help with your bad side effects.
Please do keep us updated and be very kind to yourself
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Yes ive got some medication to help with some of the side effects no pain no gain as they say
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Hi @Parmy63 glad to know that you have some medication, but please do not suffer in silence, keep talking to your clinical nurse.
Please do keep us updated and really look after yourself.
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Thank you and i will
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