Hello, I’ve joined up as I was diagnosed with the rare APL Leukaemia 3 weeks agoZ I have been in hospital ever since and of course my world has been turned upside down. I’m a health professional myself and most importantly a mum of two teenagers and a wife. I’m getting my head around it all and am on treatment. I started the atra and arsenic combinations straight away and developed atra syndrome so changes to atra plus an iv chemo. My main challenges are my sore mouth, mucositis, ulcers, stiff swollen jaw and so much pain from it and of course the fatigue which is like no other. Would love to hear from others experiences of this type of Leukemia as I’m very scared. Thank you.
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Hi @Ruth79 I have not got your diagnosis but I wanted to welcome you to our forum.
What a shock you must have had and it must have been the start of a whirlwind rollercoaster for you without giving you the time to absorb the news with your partner and teenagers.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
The Blood Cancer UK website has some useful information.
What I have found with our forum is that it often does not matter our diagnosis or treatment we often share the same fears, thoughts, feelings, symptoms, questions and practicalities.
You must be feeling very scared, lonely and isolated at the moment but you now have your forum family for support.
Please keep telling your medical team how bad your ‘challenges’ .
The main thing is that you really look after yourself and any food is better than no food.
How are your partner and teenagers doing?
Please keep posting and be kind to yourself.
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Hi Erica, thank you for your reply. The blood cancer helpline sounds like it may be helpful for me. It is such a whirlwind, got a call mid morning and was in a taxi and in hospital in an hour so didn’t get to say goodbye to anyone at home as hubby was at work and kids at school. Am only able to have 1 hour day visits from hubby so missing kids. They are due to turn 16 and 18 in June so are doing a levels and GCSES. They are in a good routine at home and we have good family support and friends thankfully. It’s a long treatment path for me I understand and like lots of the blood cancers challenges along the way will be there. As I mentioned I have already had a few! Day at a time is my motto. It’s nice o have found this support group x
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Wow, @Ruth79 what a terrible shock for you all, this sure is a family disease.
I am so glad that you have family support and what a terrible time for your kids being mid revising and exams.
The best things to come out of Covid times is the ways we have found for keeping in touch.
I have found that shock takes time to subside.
I cannot say how helpful a day at a time is and when times get hard a minute or hour at a time.
Be kind and spoil yourselves and keep posting.
A warm welcome to this community @Ruth79 - may I ask how you’re doing today? I can only imagine what an anxious time this must all be for you all. It’s really good to hear you’ve got such a good support network of family and friends which must be invaluable at this time. You might find the newly diagnosed section of our website useful - I’ve just been told I have blood cancer | Blood Cancer UK and also the mind and emotions page here - Blood cancer: mind and emotions | Blood Cancer UK. If there is anything we can do to support you and your family we’re only a phone call or an email away on 0808 2080 888 and support@bloodcancer.org.uk so just give us a shout! All the very best to you and do keep us updated if you’re feeling up to it.
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Hi Ruth
I have noticed on the forum that you have been diagnosed with APL . I was diagnosed with APL in July 2015 . Bit of a shock , I’ve been clear since January 2016 . I had two weeks in hospital to start with , blood transfusion , platelets and started chemo plus the tablets . After two weeks back out I was readmitted due to my neuts being so low . After another two weeks I was allowed home , thankfully I managed to avoid being admitted any more times .
It’s a long road I know , I could hardly walk to the car when I was let out . My hair fell out and all I longed for was to get my life back to normal. Let me know if you want to talk … I was 57 when I was diagnosed and a gym three times a week guy.
Take care of yourself and I found my family a great strength .Fortunately I have a fantastic wife who was there every minute. I also have a daughter who was in charge at the blood lab in Manchester hospital at the time (she’s got promotion since ) . She was on the case asking the specialist at her hospital about my treatment.
Keep your spirits up , my wife use to kick my bum if I looked like I was feeling sorry for myself . Remember it’s treatable , I was told by a male nurse while I was in hospital that although leukaemia is terrible APL is one of the better ones to get . By the way , I’ve been back at the gym for the last 3years and I’m doing fine .
Gordon
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Hi Gordon, so pleased you are cured that’s really amazing and positive for me to hear! I’m 42, it was such a shock. I’ve been an in patient for the past 5 weeks whilst I go to rough cycle one. I developed differential syndrome poss from the arsenic so they changed me to a different chemo iberucin think it’s called. I caught covid in hospital but thankfully had no symptoms. I’ve been neutropenic for three days now and have sepsis so on so many antibiotics etc. the worse think for me is the mouth pain and ulcers and now I have oral thrush on top. Talking and swallowing are so hard.
I had terrible leg pains as well along the way and some days I have struggled to stand up. I feel weak and exhausted but going day by day!
Are you in the U.K.? Did you get ulcers?
I understand I need to complete 3/4 60 day cycles of the atra and chemo. Hopefully some will be as an outpatient. How many cycles did you have did you get into remission after cycle 1?
Also how long did it take for your counts to start rising and growing properly?
Hope you don’t mind me asking, it’s so rare so actual truths are helpful x
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Hi @Ruth79 it sounds as if you are going through a rough time at the moment.
Really tell your medical team about the symptoms you are suffering with and ask how they can help you.
It was good to read @Gord1 experiences, and it shows that it does take time and when you are in the middle of it it seems forever.
Your body is going through a lot emotionally, medically, physically and practically
Take lots of special care of yourself and be kind to yourself and please keep posting.
Hi Ruth
I’m sorry to hear your struggling, i didn’t get mouth ulcers but I did get ulcers in my throat . I also had a problem with a part of my gum vacated by a molar I had removed some years ago . It became infected and I was referred to a dentist who had experience treating people with leukaemia. Turned out a big chunk of the root was still in my jaw . Chemo wise I cannot remember the name of them , one looked like Irn-Bru but had the opposite effect . I had the first doses in hospital and all the others as an outpatient. Four or five visits over the week then a few weeks off , then soon as my neuts had started to recover they hit me with the next lot . Then it was some light blue stuff for a week (bit like slush puppy) and my last lot was back on the Irn-Bru.
I found when I started taking the Atra tablets that they gave me a mild headache . I remember the nurse asking me if I wanted to take a tramsdol . I tried one and it spaced be out half the night , that was it paracetamol next time .
Time will heal , yes you might get some after effects even after your clear but we are all different . I did for some time usually a sudden onset of tiredness. But that has passed , you will get through it . I look on it now as one a life’s experiences, I got to talk to some amazingly brave people in the large chemo room all with smiles on their faces .
I know it’s not easy I had days when I felt a bit sorry for myself, keep strong you will get through this .
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Hi Ruth, welcome to the forum. My husband was diagnosed with APL in December 2021 and is on the same treatment as you. Atra/Arsenic …I’ll try and condense his story which hopefully will help you to know that all you are going through is horrendous but is normal for the illness and will pass. … He spent around 6 weeks in hospital. Like you, he experienced the differentation syndrome and the arsenic was changed to iv chemo for 5 days. It caused many symptoms in him, pseudogout (which caused swelling in his elbow and knee which caused horrendous pain. I wonder if your jaw pain might be this), ulcers, fatigue, and various other symptoms. He also had lots of infections during his stay in hospital. Platelet and blood transfusions galore, a night in the high dependency . It was a bumpy road to say the least!!
I understand your fear and right at this point you probably cant imagine feeling better but you will. The doctors did tell us it was Treatable and curable. (I have to admit when I looked at my husband and how sick he looked and all the symptoms he was having, i found it hard to believe). But the doctors have seen it all before and they were quite unfazed by all the symptoms. They told us the induction cycle is the worst part of the treatment and it is, so hang on in there.
Husband got out of hospital after 6 weeks and did cycle two as an outpatient. We had a few challenges with the gout again but symptoms the 2nd time were a bit easier than the first. He has just started his 3rd cycle and we are living quite a fairly normal life now. (albeit around hospital appointments).
Anything else you want to ask me Ruth, just ask. I might have forgotten things as there was something happening almost every day in the first six weeks. How are they treating your swollen jaw? Husband was put on steroids for his elbow and knee and that worked pretty well…If you were anything like us, the illness came on really quickly and within three weeks husband was in hospital. You dont get any time to think about what has happened and like you say it turns your world upside down.
You will come through this Ruth, stay as positive as you can manage. This forum is great and there are a good few people on here who really helped me in the beginning and offered me great support when I was really panicking. If you scroll through the older posts you will find their replys to me… If there is anything else I can help with, let me know …Take care xx
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Hi Ruth
I didn’t answer a couple of your questions. Yes I am in the uk , Hull to be precise . I didn’t have the arsenic tablets although it was mentioned at the end of my treatment as another option if needed . I sympathise with catpat , it was a bit of a emotional rollercoaster for my wife too. She always cringed when I went to get my bone marrow test done . Time scale wise , I was diagnosed July 2015 and I was told I was clear in January 2016 . I didn’t go back to work until the April but on for a few hours three days a week . I gradually built my hours back up over the next few months until I as back full time .
Covid then arrived and I was advised to shield , I was furloughed until the October when the firm asked for voluntary redundancies which I took . I’ve had the Pfizer jab four times now , touch wood I’ve never tested positive for covid as of yet . Keep strong and take care .
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Hi @Ruth79 it must seem like you’re at the beginning of a long, terrible journey but for many people happier days do come back, myself included and you get some of your normal back too but with the added strength that you suddenly found from somewhere that you didn’t know that you had. My blood cancer is different to yours but I can identify with the feelings that you’ve got and am currently enjoying my third year of remission, the odd Covid vaccine aside!
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Hi Ruth , it’s been a couple of months since you last posted on the forum . Just wondered how you are doing .
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Hi there, sorry not been active on here but I was so grateful for your reply and everyone else’s! So I’m doing well but still anxious to feel too positive! I achieved remission from the first induction cycle which was amazing after such a bumpy 6 weeks! The gene tear for the P-Rama? Cam whack negative too. I’m not sure ultimately what that means it it is good. I’ve done consolidation 1 the iron bridge Chemo!!! And I have bone marrow this afternoon. I then started chemo on Monday which will be the blue one beginning with M! I’m getting stronger but still fatigued and way down on energy both physical and mental. How are you?
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Hi Ruth
I’m fine , me and my wife had a week in Tenerife beginning of May . I was feeling slightly off by the end of the week , my wife wasn’t impressed with the hotel food . I developed a cough , we got home and tested positive for covid . My wife lost her sense of taste and and smell Hendrix the hotel food she was quite poorly with it . I wasn’t too bad the cough was the worse, I suppose it shows how well my four Pfizer jabs worked .
I remember the blue slush puppy and peeing blue for a short while . July is 6 years since I was diagnosed, I’m down to one visit a year to the hospital. I know it’s a long road and an emotional rollercoaster. My wife use to cringe watching them put that needle in my hip bone . It’s hard watching people go about their day to day life you just want your life back .
I was diagnose July 2015 I think somewhere I might of put 2017 in an earlier posts by mistake . I was told I was clear around about Christmas 2015 . Then visiting hospital every three months for bloods and seeing a consultant. You might find tiredness is a big deal for quite a while , possibly in a way you’ve never experienced before . But we are all different and that was my experience.
Take care Ruth and remember you will get through this the end of treatment is getting closer . Don’t know if they still do it but I was given a book with the order of mr various treatments in . I use to focus on ticking them off one by one .
Keep strong
Gordon
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Hi Ruth,
Just read your story so far… I was diagnosed with APML in March 2021
I started out on idarubicin and atra due to my white counts being too high to have arsenic. I moved to arsenic treatment once my levels significantly decreased.
Like you, I spent the first 6 weeks in hospital, what a rough 6 weeks with it being at the height of the pandemic- no visitors allowed, which was really tough for me having a 2 and 4 year old at the time. (I was 33)
Mouth sores, extremely sore skin, sickness, headaches, swelling, the side effects truly are rough aren’t they! I think my blood product transfusion count was something crazy like 37 during those early weeks.
I was able to go home after 6 weeks of being neutropenic once my levels got to 1.0
The rest of cycle 1 I did as an outpatient in the MCC in London.
I too reached remission after the first cycle, and that’s where I still am now! (Counting all my blessings)
Cycles 2/3/4/5 the first week of each treatment was as an inpatient due to having treatment daily for 5 days and needing the monitoring of electrolyte levels, then weeks 2-4 were as an outpatient twice a week. First week of each cycle always worse than the other weeks of the cycle due to the treatment being more intense. Side effects very similar to induction. Neutropenia not as big of an issue during these cycles, as once in remission I was able to have the GCSF shot to boost the neutrophils to make a temporary safer level whilst counts recovered
All in all, although by far the hardest experience and year of my life, I responded well to treatment.
Current follow up is 6 weekly bloods (testing for the pml/rara transcripts) and 12 weekly bone marrow biopsies, for the first 2 years due to my white count being so high when diagnosed
Let me know if there’s anything you’d like to ask me, I’d be more than happy to share my experiences!
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Hi @LucyK87 welcome to our forum and you have already shown the value of our forum by you taking the time to write about your experiences.
It must have been so difficult for you being diagnosed and treated during Covid times.
It must have been a very scary lonely time for you.
I look forward to hearing more about you.
Look after yourself, you have been through a lot emotionally, physically and practically
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Hi Lucy,
Thank you so much for your message! I’m so reassured to hear you are doing so well. What a similar experience we have had. I didn’t continue on the Atra due to the differentiation syndrome so when n to the idarubacin and mitoxantrone. Did you have the mitoxantrone? This was the most brutal chemo and I’m still getting over it. I’ve got one bag of idarubacin to go with 15 atra tablets and I’m finished! I’m so scared of relapse though and my anxiety is sky high. I haven’t been able to process it all yet. I’ve been left with neuropathy in my toes and feet and my finger tips. I’ve also got really bad reflux and sore gullet/windpipe. X
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Hi @Ruth79 it sounds as if you have had a really rough time and I am not surprised that your fear of relapse and anxiety are sky high.
Yes, give yourself all the time you need to process this whirlwind rollercoaster you have been on.
However if you would like to talk to someone the Blood Cancer UK support line is there for you.
I have found that I have needed some counselling help in the past (it is not for everyone) and perhaps Macmillan or your GP might be good starting points.
Perhaps keep telling your medical team about your side effects and see if they can help you.
Look after yourself and be kind to yourself.
Hi Erica,
Thank you so much for your email. I have just started to meet with the psychologist from the hospital so this will be a big help to me. It’s so hard, managing anxiety is so hard! I’m not good at being kind to myself so it’s a skill I’m slowly learning! X
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