Hi @Ruth79 the good thing about my diagnosis is that it gave me the opportunity to consider what was important to me and who I want to do it with.
That included me deciding that I was good at looking after others, but now was my time to be kind to myself and i am very much work in progress.
‘Practice makes perfect’ and all; that
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Hi Ruth
It’s another couple of months down the line and I was just wondering how things are progressing for you . Problem is it’s not just you it affects your family too . Hope they have coped ok .
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Hi! So sorry that I somehow missed this! I didn’t have that drug. Sounds like you had a rough time, well done to you for getting through that. It’s absolutely no mean feat! I too still have neuropathy in my feet, I also still get random nerve twitches all over and a tingly scalp! Anytime you want to chat feel free, I’d be more than willing to share experiences and be of any help if I can! Take care xx
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Hi- this is my first post after being diagnosed with APL in Feb 23. Everything happened very quickly after having blood tests arranged by GP, 3 days in local hospital and then transferring to UCLH in London where I spent 4 weeks. I immediately was prescribed ATRA (Tretonion) and this was quickly followed with ATO (Arsenic Trioxide) infusions. The facility at UCLH was/is tremendous and the care I received from all staff was amazing- they are so knowledgeable and professional! Having gone from a very fit 70 year old playing golf 3 times a week and running regularly, I was suddenly hit by a feeling of fatigue, isolation and wondering where this was all leading. I had some issues with differentiation syndrome after 2 weeks but with changes to medication I was back on track within a few days. After discharge I am now just completing my first consolidation cycle after passing the induction phase showing no cancer cells in my bone marrow- thankfully! It’s been a challenging period so far but I feel I’m getting through it reasonably well. You have to accept your life is on hold with UCLH becoming my second home. The travel to hospital is boring and monotonous (counted 88 rail tickets so far incl my wife) but obviously necessary. Biggest issue other the actual treatment is dealing with the strange side effects, the main ones for me being lightheadedness, neuropathy and fluid retention. As you can tell from my waffling I could write a book on this ‘experience’. If anyone is seeking advice or comment please ask. The treatment is a long road but outcomes, after getting through the APL induction phase, are excellent. It is a scary experience Ruth79 but please try to stay positive if possible… 
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Oh @nobbynerd a great big welcome to our forum and I really do wish that you would write a book, I think that you have a great turn of phase which makes your post informative, but really engaging.
So much has happened to you, your body (and your wife) since February.
Really look after yourselves and please keep posting, I look forward to hearing more from you.
Hi 
Thank you for sharing your story! I’m pleased to hear things are going well. It a tough road isn’t it.
I was diagnosed with APL in March 2022, had a bumpy ride but achieved remission after the first induction phase and have been in remission since. (Took last ATRA tablet on August 10th 2022)
There is a U.K. APL Facebook support group as well as a worldwide one if you have a search please do join. There is so much support here too.
I’ve struggled with mobility and fatigue since and also have PTSD. Frustratingly I’ve just been told I have some osteonecrosis in my knee which may be down to the treatment. I may need a knee replacement, which at 43 is also tough to get my head around.
Feel free to message me any questions.
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Thanks for your kind comments Erica. Next week we are back at UCLH for my weeks intensive treatment to start the next cycle. As you probably know the NHS have their own hotel just around the corner from the Macmillan Cancer Centre. This is a wonderful facility offering 5* accommodation (Ambulatory Care) and breakfast for chemo patients and relatives. Obviously this is a much cheaper option to taking up a hospital bed. I think this is the only one in the UK- the concept is great and it would be good to see it expanded across the country. We view the week as a ‘holiday’ after having to cancel all our plans this year. It also allows us to explore the eating establishments around Euston Road at night after having my arsenic and potassium top up ‘cocktails’ during the day…there has to be some perks to getting APL! 
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Hi Ruth - thanks for the comments but sorry to hear about some of the effects resulting from treatment. I try to focus on the positives and am grateful that I/we had the best form of Leukaemia to get (although I don’t recommend any!) and are both now in remission. I’m pleased that you have finally finished your ATRA tablets which I affectionately called my ‘stripy rugby balls’
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A positive outlook is super important and it’s great you have this. I’m a work in progress managing some anxieties still! I will get there though 
You are doing amazingly well. Hope you get chance to find the support group on Facebook, being a rare form of Leukaemia it’s nice to have new members in the small but unique club!
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Hi all. My husband has just relapsed after being diagnosed in August 2024 and treated.
We thought we were clear and booked a dream holiday so slightly in shock by the relapse.
has anyone else relapsed? Would love to hear people’s experience if so?
he was low risk before, but now high risk due to relapse and they are saying he will need a stem cell transplant.
thanks for any advice or experience with relapse.
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Hi @Sara100 and welcome to the forum.
I’m sorry to read that your husband has relapsed especially when you had made plans for a dream holiday.
Very difficult for both of you.
I haven’t personally relapsed as I’ve not been in remission but I know others who have.
My primary diagnosis was Myelofibrosis which progressed to Acute myeloid leukaemia ('AML').
I had a donor stem cell transplant April 2025 almost 15 months after diagnosis.
Transplant was challenging as was the recovery but 1 year post transplant I’m doing well.
If its something that’s being offered definitely worth doing.
Hope that helps and best wishes to you and your husband
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Thank you Duncan, that really does help. It’s good to know the transplant helped.
Praying for us all!
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Hello there @Sara100, welcome to the forum. I’m really sorry to read of your husband’s relapse, I imagine it’s a difficult time for you both. Let’s see if we can find some information for you.
May I just check it’s Acute promyelocytic leukaemia ('APL') that your husband was diagnosed with, like the original forum member who posted? If so, this Blood Cancer UK information about Acute promyelocytic leukaemia ('APL') may be helpful for reference: Acute promyelocytic leukaemia (APL) | Blood Cancer UK
Reading the above I note that Acute promyelocytic leukaemia ('APL') is considered a rare subtype of Acute myeloid leukaemia ('AML'). I live with a different myeloid disorder, but I see dear @DuncanB has already greeted you and has shared much wisdom around the forum about experiencing a stem cell transplant due to Acute myeloid leukaemia ('AML'), so do check out his posts—hope that’s okay to suggest Duncan? Here’s the great BCUK information about Acute myeloid leukaemia ('AML'): Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK
Another way to find others with experiences of Acute promyelocytic leukaemia ('APL') and relapse is to use the search box above or Related Topics below, and if you reach out to others do use their @ username and they’ll receive a notification.
Here’s a thread about folks diagnosed with Acute promyelocytic leukaemia ('APL') who you could reach out to: Experience of apl
Another slightly older thread where you can read about others living with Acute promyelocytic leukaemia ('APL'): Dad diagnosed with APL
I’d really suggest calling the lovely Blood Cancer UK nurses, their free number is 0808 2080 888 and they can offer you and your husband specialist and medical advice.
Do please keep us posted about how you get on @Sara100.
Hi @Sara100, and welcome to the forum.
I’m so sorry to read about your husband’s relapse. The shock of a relapse is hard enough, but finding out when you thought you were through the worst of it and with a dream holiday booked must feel like the ground has shifted. I hope it helps a little to hear from Duncan and DuncanB that there are good reasons for hope with the transplant route.
If and when you’d like more on the transplant side of things, Anthony Nolan - who work closely with us here at Blood Cancer UK - have a lot of resources specifically for patients and families going through that process, which you can find at www.anthonynolan.org.
Thinking of you both,
Ceri - Blood Cancer UK Support Services
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