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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