Hi good questions @patmroberts and I am sure there are others in the same boat.
Blood Cancer UK have worked with Staysure insurance company and if you were to contact them mention the code BCUK15.
As for if you were to consider going on a trial that would be a question for your treatment team and the insurance company.
If you wanted to talk to someone in the Blood Cancer UK trials team please ring the Blood Cancer UK support line on 0808 2080 888.
Please let us know how you get on and take lots of care
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15 yrs ago I was diagnosed with Acute Myeloid Leukaemia. I met with a consultant haematologist, who mentioned going on a trial. Trial 15. I shot him down in flames, saying ‘I don’t want a trial, I want something that works!’
I had no experience of any cancer treatments & was totally ignorant about trials.
I went on the trial & went into remission after the first round, the best possible outcome, however, all my 6 & 9 chromosomes had changed places & I had the worst prognosis for recurrence, so was put forward for Stem cell transplant.
Who knows if the outcome would have been different if I’d not been on the trial? But I do know that I’m last man standing out of 3 of us who went through the treatment at the same time. The only difference I have been able to quantify is that we all had different approaches to the Stem cell transplant, all with different ailments caused by the Acute Myeloid Leukaemia & I was the only one who’d gone into remission after the first round of treatment.
All I can say is any advances in treatment have to be trialled for the benefit for others.
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Thanks so much for your honest and factual post @Corfu80 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 am not surprised that you, your husband and perfect match sister are struggling to breathe, welcome to our forum, you have had a lot going on in the last 16 mths.
You show so clearly how we are all so individual, unique people.
You say that you have an appointment to discuss a clinical trial next week.
I expect you have lots of fears, questions and practicalities to discuss.
I have to write everything down I want to say first and if you have someone to go with you often 4 ears are better than 2.
I have never learnt to speak medical language.
You do not have to make a decision on the spot, give yourself time to think about everything.
I will copy tour post to the Blood Cancer UK nurses in case they have any handy hints @BloodCancerUK_Nurses.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Perhaps just be very kind to yourselves and look after yourselves, the waiting and not knowing is not a nice time. Please do keep posting
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Hello Erica, thank you very much for your reply. Clinical trials is all I have left now, still if I will be here when my slot comes.
Kind regards.
.
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Hi @Karpeta please do let us know how your appointment goes next week, I will be thinking of you.xx
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Will do xx
I see that bloods already booked for me on Monday, my total whites are still low now. That’s good for now.
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Hi Karpeta,
My name is Rowan and I’m one of the Blood Cancer UK Clinical Trials Support Nurses. I’m very sorry to hear about what you’re going through. If you’d like to discuss clinical trials or seek additional support from us or our Support Service, here’s how you can get in touch;
Blood Cancer UK Clinical Trials Support Service referral | Blood Cancer UK
Blood cancer information and support by phone and email | Blood Cancer UK
Take care,
Rowan
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Hi @Karpeta
The blood cancer clinical trial nurses are brill
I emailed and had a reply almost straight away from Rachel
I’m not eligible as yet and Rachel was very thorough in getting information to me.
Reach out they are great
Even if it arms you with information talking to your consultant
Hope all goes well at your appointment 
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Hi 2DB,
Thank you for your reply, this is a big unknown thing for me.
I absolutely agree with you, the more professional people I can talk to the better I will feel about moving forward. I will certainly reach out to the clinical trial nurses.
Sending you my best wishes, I will be updating on my progress here.
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Hi Karpeta you have the link to the Blood Cancer UK Clinical Trials team, yes, I have found them so helpful and informative too.
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Hello @Karpeta
Thank you for posting and welcome to our forum, I can see you have had lots of support from the community. I, along with my colleague Rowan from the @ClinicalTrialsSupportService, wanted to also offer support if you should need it? Within the Support Services team we have 5 Nurses that specialise in Blood Cancers so would be very happy to talk to you if that would help? I would also suggest talking to our Clinical Trials team too.
It must be the most challenging time for you and your family so please do reach out and continue to ask questions.
We are here if you should need us: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care
Gemma
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Good morning Erica, good morning Danielle, good morning all,
Hard to talk …
So just an update you all post my yesterday consultation. Firstly I am in the best hands possible now, if there is still a way out for me it will be done.
Next week we will start a new line of treatment, will be my 4th line of treatment (this number is much too high). The treatment takes 28 days for a cycle. BM at the end will show if it works, if so there will be 2-3 cycles total. Predicted chance I have is 5%, it is not much, but it is a chance.
Till November there is no a slot available in the trials. The first cycle of the new treatment will bring us to November, if it is not working then perhaps trials. To get a place at the trials is almost impossible, there are about 6 people for one slot. Today there are three drugs are used for Acute myeloid leukaemia (AML), but two of them would not do anything for me. However the third one (latest one) is another hope on my pass.
Well … two month ago we learned that i have a perfect sibling match, cells are harvested and ready. However today i am like a living dead … physically I am feeling fine. The consultant yesterday was very impressed that I still keep in shape, do strength work and go for my walks.
My all vital organs are still in great condition too.
I have that 5% chance, ok … I’ll take it! F…ck the cancer !
Love to evrybody xx
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Oh @Karpeta thanks for updating us.
I reckon keep up your exercise.
Don’t forget that the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do let us know how you are doing and sending you lots of love xxx
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Hello @Karpeta
Thank you for taking the time to update us on how you are doing. I’m glad to hear you’re feeling well in yourself, and I wish you all the very best with your upcoming treatment. It sounds like your medical team is providing really good support.
I understand that challenges with trial slot availability can be frustrating, and I’m sorry you’re facing this. If you need to explore other trial options in the future, please feel free to reach out to our Clinical Trial Support Service (CTSS).
We provide general support for those considering or participating in research, and we also help people with blood cancer explore potential clinical trial opportunities. Although we can’t guarantee there will be suitable trials or confirm eligibility, we offer consultations via phone or email to gather more information about a person’s situation. We can then search for relevant clinical trials, and where possible provide a person with information to discuss with your treating team.
No pressure to get in touch @Karpeta but I just wanted to make you aware. Blood Cancer UK Clinical Trials Support Service referral | Blood Cancer UK
Take care, and wishing you all the very best,
Rachel.
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Hi @Karpeta so sorry that you’re going through this.
I have tried to read your trail but I just wanted to drop a post to you to see whether you were able to have azaciditizine and venetoclax (hope I have spelt those right, and sorry if not). My husband had induction chemo, FLAG IDa, FLAG and consolidation but what really worked in nipping his MRD down was the above combination. He did two months worth and it did work and got him to transplant in June.
I also wanted to post to say that we have an acquaintance with Acute myeloid leukaemia (AML) who went to transplant without remission (UK based). She is doing well at the moment although she is around 6 months out.
Sending all my love and well wishes to you and your family and please do disregard the above if it is not helpful,
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Hello, thank you for getting in touch. Have to say you did an incredible job with the day to day notes on your husbands Acute myeloid leukaemia (AML) and your family support story. You are a very strong lady and a great rock for whole your family. I hope your husband continuous to recover beautifully so you all can enjoy every day of your life together. Reading about your over a year long journey was a great help.
Regarding the target drugs azaciditizine and venetoclax, yes that is all I have left to do. I was going to start them tomorrow (already today - Tuesday), still can start them any day now, but we (trials, transplant consultants and my husband and I) had a change of pan. We going to see if I can make it into November and get a place in the trials coming. Three weeks of waiting is a very long time for me , but it could change my stars.
Sending you and your family lots of love.
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Hello @Toadmum thank you for sharing your experience and the positive outcome for your Husband and family. Wonderful to learn the treatment has worked.
Hello @Karpeta, thank you also for sharing, I so hope you get to November, the trial place and your stars align. Take care.
Lynne (Clinical Trials Support Nurse)
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My husbands consultant was very helpful in explaining that these two drugs worked in a different way to some of the big heavy hitting ones. I was very frightened at the time as there was some question of getting to transplant if we didn’t try this combo. The first round of it worked really well & he did a second to keep him ticking over before transplant.
I don’t know which Center you are under for the transplant but I think our friend got a transplant without remission at one of the London hospitals which is more of a research hospital and has a different type of funding for such cases. She was referred down via our regional transplant centre.
You’re doing wonderfully so keep going with all the things that make you feel as well, happy and positive as you can muster.
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