Hi all, husband was diagnosed with Acute Myeloid Leukaemia four weeks ago and is currently in hospital for around six weeks having ATRA/ARSENIC treatment. Is anyone else on this for Acute Myeloid Leukaemia and able to give any advice?. Husband has developed painful gout in his elbow and knee so far. Also had a differentiation episode where treatment had to be paused for a few days and then some traditional chemo given. The last few weeks have been a very bumpy ride. Wishing everyone on here well and hope you are all coping
Hi. I have Acute Myeloid Leukaemia was given CPX chemo. It’s very hard going and I hope your husband manages to push through even on days it feels too tough which happens a lot. Are you allowed to visit? I wasn’t allowed any visitors so that staff became my family. It’s awful to have to watch and not being able to help. Keep strong, there is light at the end of the tunnel x
It’s so great that you can share experiences @neffy. How are things for you at the moment?
I’m ok at the moment, waiting for my bone marrow transplant in February not been given a date yet. I hope by sharing experiences that it helps others x
Hope you are well. I am recovering from covid but it was mild.
I know it will @neffy, no doubt about that! I’m glad Covid was only mild. February will come around so quickly won’t it! So, take it easy and look after yourself.
Lovely to hear from you neffy and I am sorry you are having to go through this too!! Its very tough to watch someone you love go through this so I cant imagine how it must feel for you going through it. My husbands came on really suddenly, just after he had his booster jab for covid. We thought he had flu, if only!! He looks so poorly its hard to imagine him well but the doctors have reassured me this is to be expected as we are only three weeks in and the induction period is the worst!! The visiting stopped two weeks ago. I have found that has tipped me right over the edge. My husband isnt that chatty on the phone but face to face he talked for ages. He kinda keeps everything to himself. Hoping the visiting restarts soon …keep us posted where you are in the process and how your are doing. xx
I do hope your doing okay? We appreciate how difficult it can be when restrictions have meant that you are not able to be by the bedside of a loved one but also if your husband finds talking on the phone more difficult then it can really leave you in a horrible place of worry.
I do hope his symptoms do somewhat settle as his regime progresses and that he remains as well as can be expected. It is great to be able to hear others experiences that can give you both hope of a lesser bumpier road. However should you wish to ever talk things through please don’t hesitate to contact us on the support line- 0808 2080 888.
Take care, Lauran
@neffy please let us know when you get your Bone marrow transplant date, there is a lot of other lovely people on here who are in your position or have gone through a Bone marrow transplant transplant.
Look after yourself.
Hello and welcome @Catpat. So sorry to hear that your husband is having such a difficult time. Usually Arsenic and Atra are given for Acute Promyelocytic Leukaemia, is this what you understand the diagnosis to be? Is your husband back on this treatment after the differentiation syndrome? The gout and this are side effects that can happen particularly during the first course but tend to settle for the consolidation courses. As Lauran mentioned please do get in touch in you need support and we wish your husband well in his treatment. How to contact Blood Cancer UK | Blood Cancer UK Kind regards Gemma
Hi Gemma, Thank you for your reply. We were told originally APL but then when we got to the hospital in scotland that specialises in Leukaemia we were told Acute Myeloid Leukaemia. He presented with a low white platelet if that helps in any way. Initially we were told that he would be on ATRA/ARSENIC. He started on the Atra/arsenic but then developed gout in elbow and knee and the differentation in his chest about 8 days in to treatment. He was then put on high dose steroids and strong gout tablets to calm everything down. Treatment was paused for around 3 days then they decided to do 5 days of Chemotherapy (cytarabine and daunorubicin) to keep on top of the cancer. The week after he went back onto the atra treatment which he has now been on for the last two weeks. He developed gout again which they are treating and was totally floored last week (doctor said result of chemo because his bloods were now flat but they should start to recover around day 21 - 28 . Loads of other side effects to high blood pressure, infection, etc. I think the plan is to add in the Arsenic again. Hope this all makes sense Gemma.
Hello again @Catpat, thank you so much for the explanation. It sounds like your husband has had a really tough time. Usually count recovery would be about 28 days following the start of treatment. Infection can slow down count recovery so don’t be alarmed if there is a delay in recovery. Please do keep in touch and call if you need to talk anything through. Best wishes to you and your husband. Kind regards Gemma