Hello everyone, I was diagnosed with Acute myeloid leukaemia (AML) just before Christmas. It has come as a great shock as I was not feeling unwell but had a terrible nosebleed and had to go to A&E where after tests I was given the diagnosis. I started on the less intensive regime of Azacitidine and Venetoclax on Boxing Day. I am not feeling too unwell but due to my platelets being low I have so far received two infusions. My life seems to have been turned upside down by this illness and I wondered if there was anyone else out there who is on the same treatment and can give me some hope. 2024-01-20T00:00:00Z
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Hi Jane,
When I was reading your post I honestly thought that I had written it!
I too was diagnosed with Acute myeloid leukaemia (AML) around the same time. And I’m also on the same trial. I’m now in between Cycles and I will have my bone marrow biopsy tomorrow( which I’m dreading) then I will start Cycle 4 a week or so later. Each cycle has been different but I could honestly say it hasn’t been getting better for me. Each time I feel so sick, weak and nauseous.
I’m praying that Cycle 4 will be better and for you too 
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Hi @Jane3 a great big welcome and I am so glad that you have found @Jan08 already.
Yes , I found diagnosis a great shock too and it took me a long while to come to terms with mine
I really look forward to hearing more about you.
Be ever so kind to yourself and we have many diagnosis on here, but I have found we often share the similar fears, thoughts, feelings and practicalities…
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Dear Jan08, thank you for your message but so sorry you are struggling with your treatment. Are you on Azacitidine and Venetaclax? I am due to start a third cycle of this combination next week as an outpatient. This has had to be delayed due to my neutrophil count being too low. I have had this problem before and have to inject myself with a stimulant to help increase the neutrophils to an acceptable level. I have been told by my consultant that the Acute myeloid leukaemia (AML) is currently in remission but I am always worried that the treatment will stop working. In the meantime I am waiting to hear progress on a possible stem cell transplant. I would be interested to hear of any one on this site who has experienced this. The diagnosis of Acute myeloid leukaemia (AML) was a great shock to me too and followed a visit to A&E due to a heavy nosebleed. I have been heartened by all the support I have from friends and family and I hope that you too feel the love around you. Please let me know how you are getting on.
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Dear Jan08, I have sent you a message on this site but somehow it has appeared below yours. I am not very good at technology so hope you can find it!
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Hi Jane, I did find it.
I’m on the Venetaclax.
My bone marrow biopsy was agony today. The doctor must have been inexperienced because she tried twice and all she managed was a piece of bone which stopped the bone marrow fluid getting into the tube! I was screaming the pace down. At one point she hit a nerve a horrendous shooting pain went down my leg and my whole leg shot up into the air. I insisted for My regular doctor to take over. She left her appointments and came and took over. By now I was so traumatised I hadn’t stopped shaking or crying for hours. I will hopefully be sedated the next time 
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Hi @Jan08 what a horrible experiences for you, yes, definitely tell your medical team and ask for sedation.
Be ever so kind to yourself and your shaking and crying shows what you have been through xxxx
Dear Jan08, that all sounds horrendous and definitely should not have happened to you. I am so sorry. I have had two bone marrow biopsies. The first was completely painless but the second by a different doctor, was very painful despite the local anaesthetic. I too shouted out in pain. Like you, I really think it depends on the skill and experience of the practitioner. It does make one fearful of having another. How are you feeling now?
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This morning I feel better but when I go back there and think about it, I get really upset.
I will find things to do to distract me from my ordeal. I will definitely be sedated next time!
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I too had a bone marrow biopsy similar to yours Hit my sciatic nerve So i refused a second one at the end of my treatment for multiple myeloma I hope your feeling better soon
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Hi @caz3 welcome for our forum and so sorry that you had a bad experience with a bone marrow biopsy too.
Please do keep posting as I look forward to hearing more about you.
Look after yourself
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Dear Jan08 , Caz3 and Erica, it’s so good to have the support of others going through this horrible journey. I am trying to remain positive and hope that the treatments will keep me going for as long as possible. I guess that none of us ever imagined we could succumb to this dreadful illness. The shock of the diagnosis makes one feel very vulnerable. Today I met a lovely friend for coffee and a chat and tomorrow I’m doing the same. On Monday I am going to attempt to cook a roast dinner for my family. These little achievements and interactions are what sustain me. The future is unknown so I am trying to live just for the present. I wish you all a blessed and peaceful Easter.
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Hi Jane, apart from lower back pain where the biopsy was, I’m feeling ok.
I hope you’re ok too x
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Hi Jan, glad you are okay and hope the back pain wears off soon. Mine did after a couple of days. I went for a blood test today to see if I can start chemo again next week. I haven’t had any since February so it will be strange to start that routine again. I am feeling quite well at the moment thanks and hope you continue to recover from your biopsy. Take care.
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I hope you have a lovely Easter & be kind to yourself I must say i wish i had friends to talk to because only other people with cancer know what its really like I had never heard of multiple myeloma till diagnosed with it Anyway onwards & upwards 
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Oh @caz3 it sounds to me that your forum family here just fit the bill for your needs,
Yes, my friends just do not understand for exactly the reasons you say, but that’s OK we have so many other things to do and talk about
Be kind to yourself and please keep posting how you really are.
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Hi Jane I am on the same low intensive treatment as yourself, I can totally understand how much you were in shock, I was diagnosed in October 2023 real shock in hospital for almost 10 weeks because of infections including sepsis. I had a pacemaker fitted 5 weeks before due to ventricular standstill, when I didn’t feel well and my blood pressure dropped I presumed it was related to recovery of the pacemaker. I have had 12 rounds of treatment so far and moved from 4 weekly to a 6 weekly treatment. I have my chemotherapy injections as an outpatient, also do plenty of injections at home, I was having regular blood and platelet transfusions but not had one for over 10 weeks now, feeling well, my consultant is pleased with how my treatment is going. I am very careful to try and avoid infections wearing masks and avoiding crowded places.
I am 73 was a very active person before live on my own since my husband died and my family live several hours away. It is good to find others on the same treatment. Hope all goes well for everyone. X
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Dear Lesley 34, it seems that our Acute myeloid leukaemia (AML) journey has been similar in some respects and I am so glad that you are doing well at the moment. Unfortunately, I came out of remission after four treatments of Venetoclax and Azacitidine. I have been told that there are no further effective treatments for me. It was a hard blow when I had been so hoping to have a stem cell transplant. I am now on supportive care (palliative). My blood counts are consistently low so I need blood and platelet transfusions every week. I have searched extensively for suitable clinical trials but there seems to be nothing out there to give me hope. Sorry that my post is so negative. I wish it were otherwise. I wish you well and hope that you continue to improve and enjoy your life. By the way, we are the same age.
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Hi @Jane3 I am so glad that you have posted again and I am sorry to hear that you came out pf remission.
I wonder if you have contacted the Blood Cancer UK trials team about the availability of a trial?
They can be contacted via the Blood Cancer UK support team on 0808 2080 888
We are here for you however you feel, and I find that I can be really honest how I feel on here and also the Blood Cancer UK support line above is there for you, please do keep posting.
Be ever so kind to yourself and look after yourself.
Hi @Lesley34 a great big welcome to our forum and thanks so much for sharing what has been going on for you.
Sorry to hear that you have lost your husband and your family live several hours away it must have felt very lonely, but now you have had the courage to join our forum family
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be very kind to yourself and look after yourself and please do keep posting