Just diagnosed with AML

I don’t now how I feel right now tbh. After 4 days in hospital due to anemia, hemoglobin of 48 and 4 blood transfusions, my counts are no where near high enough to continue with cycle 3 of chemotherapy. Sending me home and checking my blood counts twice a week in day unit until or if they improve enough to restart treatment. Consultant reassured me that they have seen this before and are not worried about me. I now have the what if going on, what if counts never rise, I cannot have anymore chemo, what happens then, questions I know consultant went through but my brain didnt quite process. I shouldn’t have been so confident in everything going smoothly, it has come back to bite me on the bum!

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@Caroline30 be kind to yourself, you are doing an amazing job and you’ll be back starting chemo in no time. Perhaps you could re frame your thoughts to try to make the most of the time at home. I know this is hard as I find it difficult every time there is a bump in the road but we try to be pleased to have a nice dinner at home or an extra night to sit in the garden.

We have a family friend who went through Acute myeloid leukaemia (AML) 10 years ago who told me at the beginning that there will be bumps in the road, and accepting that is half the battle.

Lots of love to you.

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Oh @Caroline30 those ‘what if’s’ in the mind are horrible aren’t they.
If, very naturally in my book, your mind did not process all your consultant said then perhaps ask to speak to someone and ask all those questions that you would like answers to.
really look after yourself and please do keep posting how you are doing.

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Heya @Caroline30

You are bound to be feeling low but try not to be hard on yourself. The waiting can be overwhelming but your body will do its thing in time.

Could you speak to your clinical lead nurse to go over things and re-ask your questions? Danae’s is amazing and spends time going over things.

We are thinking of you and sending love. Be kind to yourself and keep us posted

Sarah xx

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Sorry to hear all this Caroline. Deep breaths and remember 1 day at a time. You’ve got this and it’s ok to not feel ok with it all. Agree speak to your CNS if you can. It’s really hard post chemo with fatigue to concentrate so don’t beat yourself up on what you can and can’t remember. Sorry about your daughter hope you got to honour her memory. Take care and be gentle with your self

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Feeling fed up. It has felt so much longer than two weeks back and forth the hospital for bloods to be checked then transfusions everytime. Want me to have bm biopsy hopefully on Thursday, even though I have had no chemo, so haematology will have a better idea of my treatment going forward and come up with a plan, bloods are very slow in recovering so maybe can help with that. Platelets are good though up from 7 last week to 21 today. I know I cant change things but can’t help but worry, just want to get on with the chemo, been eight weeks since I finished my last cycle.

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Oh @Caroline30 I can feel your frustration when reading your message. You are right in the thick of things and I can imagine how challenging it is right now for you.

Naturally, I don’t have a solution but I want to tell you that you’re doing a wonderful job. Two weeks has passed - that in itself is progress.

My husbands was very slow to recover during his last round of chemo. His consultant called it ‘sluggish’ which wasn’t very reassuring, but I want you to know you’re not alone.

Have you been able to do anything nice during your time off chemo?

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@Toadmum. Thank you for the reassurance. How long did your husband’s take if you dont mind me asking? Did he eventually get his chemo? I have spent quality time with my grandchildren making memories though it has also knackered me out! But Iam grateful for the little things.

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Spending time with your family sounds the perfect way to spend your time.

Yes he did get the chemo - he’s just going through his stem cell transplant recovery in hospital at the moment.

His probably took 9 weeks during the last round , and actually really only started to recover properly as he started chemo again pre transplant. He was receiving regular platelets and blood transfusions as his levels were constantly fluctuating. He had had quite a lot of chemo by this point and his consultant didn’t seem overly concerned but it was very frustrating.

We have a family friend who had Acute myeloid leukaemia (AML) ten years ago. His platelets never get past 75 even now and his haemaglobin never past 90, it is his new normal post chemo.

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Hi
I am in hospital post transplant 1 week now.
The pain has been terrible anyone else experience that?
Drugs just going last and feel crap with so little sleep

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Hi @Jilly congratulations on your transplant. Hope you are managing to get some rest even if you aren’t sleeping.

My husband is on day 18 from his transplant, and I think he said day 5 or 6 to day 11 or 12 was particularly hard for him. I’m not sure he was in a lot of pain but he said his throat and mouth was very sore, his stomach upset and he just felt generally rubbish. He’s feeling much better now and is back to eating and feeling in better spirits.

Take care of yourself, you’re doing a great job. Keep talking to your medical team about how you feel and remember you’ve done a week, so another week and hopefully you’ll be feeling brighter.

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Oh @Jilly I am so glad that you have had your transplant but it sounds as if you are going through a really rubbish time.
Yes, as @Toadmum says keep talking to your medical team and just take it a day, an hour or a minute at a time.
If you cannot sleep, just rest and remember you and your body have been through a lot medically, emotionally, psychologically and practically.
Please do keep posting how you are.
Be very kind to yourself

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I have been feeling really down since the weekend. I reached out to the macmillian support line, I find social media difficult, people doing things I wish I could do but a constant reminder that I can’t right now, I have missed so many special occasions already. I just want to feel and look like me, Iam not liking what I see in the mirror. Yesterday my hemoglobin was 72, but needs to be a bit higher so had blood transfusion, platelets 29, neutrophils 1.22, white cell count 2.6. Had BMB last Thursday 11th, appointment with consultant next Wednesday 24th to discuss results and bloods, hopefully he will be happy and fingers crossed I get to start my third cycle. PLEASE!

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Hi @Caroline30 I am sorry to hear that you have been feeling really down since the weekend.
Don’t forget the Blood Cancer Support line is also there for you on 0808 2080 888.
Personally, not medically, I would say when you are having or had treatment it is likely to affect you emotionally, physically, psychologically and practically.
Perhaps just be ever so kind to yourself.
I will have my fingers and toes crossed for you on the 24th, please do let us know how you get on.xx

So sorry that you’re having a hard time. Erica shared some wonderful advice but keep being kind to yourself.

Your bloods sound like they are doing great! Amazing job on the neutrophils. My husbands blood and platelets are always the last to improve after the neutrophils. My husband was usually allowed to start his chemo if his neutrophils were above 0.5 but I imagine that it is chemo regime specific!

Hopefully your medical team will give you the go ahead very soon :heart:

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Awww @Caroline30

Hang on in there…. Your bloods are sounding good :blush:

Rather than focus on what you may be missing out on perhaps try to plan stuff to look forward to when you are feeling more like yourself.

Take things easy for now and keep us posted

Sarah

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