Dad recently diagnosed

Recent diagnosis
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Hello.

Over the last month my dad has had swollen feet, felt breathless, has a pain in his left side, sore gums, bruising. It got worse over time. We initiated gp appointment and blood tests etc. on Monday this week a gp blood tests showed v low heamaglobin and we ended up in A&E. we have been in hospital since then. It is confirmed Acute myeloid leukaemia ('AML') and he has started oral chemo as a stop gap to get him ‘better’ enough before induction chemo. I think. He is 76, otherwise fit and healthy. He has had platelets and blood a few times. I am terrified and heartbroken.

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Hi @Help

Welcome to the forum. I’m so sorry to read about your Dad’s diagnosis with Acute myeloid leukaemia ('AML')

It’s bound to be a huge shock for you your Dad and family. There’s many here on the forum who can relate to where you all at right now.

Positive news that your Dad is generally fit and healthy and that will help hugely in decisions about next steps.

Please feel free to ask questions and just be aware that none of us can give clinical advice but always happy to share experiences.

It might be helpful to reach out to the @BloodCancerUK-SupportTeam and @BloodCancerUK_Nurses as they can offer excellent support.

Take care and all the best to you and your Dad.

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Hello @Help and welcome to the forum.

I can only imagine how frightening it must be, especially as it all happened so quickly.

It sounds like they are looking after your dad. How is he doing?

I think it’s really important that you have found the forum. It’s really hard for family and there are lots of forum members here who will be able to support you and understand what you are going through.

I have shared the helpline number in case you want to talk anything through.

Please keep us updated on how you are both doing x

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Hello there @Help, welcome to the forum at this difficult time. It’s really so loving of you to join to help your dad, and please know you’re not alone in supporting a loved one diagnosed with a blood disorder. The forum is here to support you both.

I see you’ve been greeted by dear @DuncanB and @Nichola75 and would agree with Duncan that being fit and healthy is positive for your dad (and us all). Perhaps you’d like to read the great information about Acute myeloid leukaemia ('AML') researched by Blood Cancer UK: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK

I wonder, do you have loved ones you can speak with about how you’re feeling, aside from your dad? It can really help to have trusted confidants to talk about all this with, and personally I find therapy also really helpful for processing and living with my diagnosis of Polycythaemia vera ('PV').

Counselling can be sought via GPs (although, just to warn you, waits are long) and privately via organisations like BACP, UKCP and Mind. Cancer organisations like Macmillan Cancer Support have some great free advice about counselling, while Maggie’s might even have a centre near you to pop into.

For what it’s worth, I take a daily type of chemotherapy (hydroxyurea) to keep my blood cancer under some sort of control. I didn’t know chemotherapy could come in capsule form before diagnosis, isn’t it sci-fi?! Sounds like your dad is already under the care of haematologists who have a care plan for him, which I’d say is ideal.

If you’d like to talk through any of the medical side of things, how you and your dad are doing, or other queries, then do consider giving the Blood Cancer UK nurses a call on the number Nichola shared above, they really know their stuff and can point you towards other resources.

Hope that helps a little @Help, do have a look around the forum to see how others affected by Acute myeloid leukaemia ('AML') get on.

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Hi lovely. My mum (68) was diagnosed with Acute myeloid leukaemia ('AML') last month so I am in that similar stage or trying to get my head around it. She is due to start treatment this coming week. Do you have your dad’s mutation results back yet and have they discussed what the treatment plan will be? Sending lots of love.

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Hello, thank you for messaging, and sorry to hear about your mum. My dad is 76, and I am 42.

We have not found out what mutations he has yet. You must know your mums? What is her treatment plan?

we are unsure of dads yet. I did hear the consultant mention induction but my mum also heard her say it isn’t curable and he prob has about 18 months left. So we really just don’t know right now.

I feel a bit worried about everything of course. Not sure how we will all manage with jobs and children etc. the suffering is also something I find v difficult. He hasn’t been feeling well for about a month. And ended up in A&E and was v poorly. His heart was already failing.

I can’t see your message whilst typing this so I’m sorry if I have forgotten something! It would be great to stay in touch if you wanted to, it feels quite a lonely and worrying place to be.

how is your mum feeling? Do you have other family members for support?

x

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Yes of course we can keep in touch. It can be quite a lonely journey and it is nice to talk to someone on the same path. My mum is 68 and I am 36. My husband had Lymphoma a few years ago and is in remission now but it means I know more about blood cancer than the average person my age!

My mum was diagnosed three weeks ago, we got her mutations back about a week ago. She has CEBPA (double mutation). She is due to start the less intensive chemotherapy next week (it is called Aza / Ven). She was offered the intensive chemotherapy but it would be extremely tough for her mentally. Aza / Ven is generally the recommended treatment for older people.

My husband, Dad and siblings are around to help and keep my mum company in hospital. We are very lucky that she is currently feeling well other than her bruises due to low platelets. I am struggling emotionally, I have a toddler and am also halfway through my pregnancy so feel like I am being pulled in lots of directions. I want to spend as much time with my mum we possible, she suffers from a lot of anxiety. I can definitely relate to how heartbreaking it is to see the person you love suffering. It is hard to always be strong.

Things will be a bit clearer once you get your Dad’s mutations back. There could be some drugs that they add to the Aza / Ven regime that target certain mutations.

Sending love and solidarity to you and all the family.

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congratulations on your pregnancy :slight_smile: how many weeks are you? How old is your toddler? My children and 10 and 7. I can’t begin to imagine how stressed you must feel being pregnant. It is hard enough as it is. I hope you are managing to take some time to rest? Not easy though I know, especially with a toddler. I am pleased you have family support :slight_smile: I have my mum and sister.

sorry your husband went through this too. It is so cruel. My cousin died of Acute promyelocytic leukaemia ('APL') 4 years ago. She was 49 and died within a week of going to A&E so it was very shocking and sudden.

my dad is taking hydroxycarbomide (prob have that wrong!) atm to bring his white blood cells down. He is having blood and platelets pretty much every day atm tho. It is hard to wait, and to sit with the uncertainty.

I am really grateful we have found each other. Where in the county are you? We are in Essex.

Sending love and solidarity to you and your family also x

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Morning! I am 22 weeks pregnant and my toddler is 21 months old. It is pretty non stop! But greatful to have the distraction.

That makes sense regarding your dad. I think that is the typical course of action as most people have white blood cell through the roof when first diagnosed and it is just about getting it stable enough to start treatment. Aza / Ven is quite a new treatment (they started using it 8 years ago) and is a great option for older / unfit patients. It is a lot better tolerated than intensive chemo and most of It can be done as an outpatient. It doesn’t cure the Acute myeloid leukaemia ('AML') but could give you many more years with your Dad with a better quality of life.

So sorry to hear about your cousin! That’s awful. Acute promyelocytic leukaemia ('APL') is a weird one as it is very curable but that relies on it being diagnosed very quickly and it is so rare I can see why doctors wouldn’t consider it.

We are in Bristol and lucky enough to have a good hematology department here. Are the medical team at the hospital your dad is in good? Sounds like they are just giving you snippets of information at the moment which is hard.

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They do seem good so far. Although as it is bank holiday we won’t see them until tomorrow. He is suffering quite a bit and feeling quite despondent today with various side effects etc. it’s hard to see. But I know it is also part of life. Trying to breathe. I’m pleased your haematology team are great :slight_smile:

my children are just under 2.5 years apart so a bit of a larger gap but I do remember it well and know how hard it is and how you must be feeling in that regard. Are you having an ok pregnancy? I had HG for both of mine which was just awful. 21 months old is also full on! But adorable at the same time.

do you know what day your mum will start her treatment this week? How are you feeling about it?

I just hope we can at least get dad to treatment. How long did your mums mutations take to come back?

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She was supposed to be admitted today but no beds. She has to ring again in the morning, she is feeling very anxious about all the uncertainty and I wish I could help. So much waiting involved? How is your mum coping with everything so far.

In regards to bone marrow biopsy results. I think they told us the day after that it was Acute myeloid leukaemia ('AML') and then a week later the results for the most common mutations come through (she didn’t have any of those) and then a week later the results for the rarer mutations came through (she had one of those). Her case is a bit unusual though as most people tend to have a variety of mutations. When did your dad get his bone marrow biopsy done? I hate hospitals on bank holidays, it is so hard to get any information.

I am thankful to have been blessed with manageable pregnancy thus far. The tiredness is starting to set in as I am getting bigger though. HG sounds awful, bless you x

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He hasn’t had a bone marrow biopsy done :frowning: they haven’t said anything about a bone marrow biopsy. So that worries me.

Let me know if your mum ends up going in tomorrow x

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My mum is baring up. We are all up and down which I’m sure if totally normal. We are all quite worried about what the future brings but what can we do

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It’s so hard. All you can do is take each day as it comes x

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Hi. Mum is still waiting for a bed. Very frustrating! I would ask about when they will do the bone marrow biopsy as this is quite a viral part of the diagnosis process. They might just be trying to get him more settled first. I presume they knew he had Acute myeloid leukaemia ('AML') from the blasts in his blood test. How is he feeling today? It is all so hard.

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It’s very difficult waiting for a bed for your Mum @Rosevin4

The blood counts definitely give an indicator and I believe it’s the Bone Marrow Biopsy that leads to the formal diagnosis.

That was certainly the case when I got my Myelofibrosis diagnosis.

I’m sure the @BloodCancerUK-SupportTeam would be able to advise

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Hello again @Help and @Rosevin4, just wanted to offer a little reassurance like @DuncanB about having a bone marrow biopsy (BMB).

From my non-medical understanding, many blood disorders can be detected from just a simple complete blood count (CBC), but from what I’ve been told by my haematologist it’s at the source of blood cell production in our bone marrow where our specialists can really zoom in and see what’s going on for diagnosis purposes. I’d say try not to worry about whether your dad has had a BMB yet, or at all, as so much can be found out from CBCs alone. There’s some great Blood Cancer UK information about BMBs and other testing here: Blood cancer tests | Blood Cancer UK

Just to add, I take hydroxyurea/hydroxycarbamide/hydroxy and I’m sure any of those terms will be familiar to folks here and certainly your specialists. You’re so right about the uncertainty of treatments like these, and I would say in my experience that dosages can be adapted until the medicine is optimised for your dad and his symptoms.

May I just say how lovely it is that you and @Rosevin4 are supporting one another despite your experiences with the big C. Do please consider reaching out to others around the forum who can share their experiences of Acute myeloid leukaemia ('AML') and its treatments too, using the search box at the top.

Wanted to say @Rosevin4 how sorry I was to read your mum was still waiting for a bed earlier, hopefully she’s settled in now. Frustrating indeed, and I’m so glad your mum has you looking out for her.

I’ll share the Blood Cancer UK free number here for you both to use should you want to talk about any of the treatments or how you’re doing in regards to your parents. You can ask the BCUK specialist nurses medical queries and they can point you towards other information and resources, just give them a call on 0808 2080 888.

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Hey, did she get a bed today in the end? Will she be staying in for a specific length of time do you know? The waiting is agonising.

I was reading the other day that they can find a lot from blood. His went to st Bart’s which I know is a world leader in blood cancer. It’s hard but it sees you had to put your trust in the medics. I do like to know details tho!

dad not great, but baring up I suppose medically. The hydroxycarbomide has done its job so the have stopped that for now. They have 1 mutation back, npm1, still waiting on others. They did say tho that it will most likely be aza ven he will be on, but not sure when he will start. He is still having bloods and platelet’s, and has nose bleeds and has c. Diff too so they aren’t happy to send him home yet.

I didn’t go up to hospital today as I haven’t felt well, so I feel bad about that.

thinking of you x

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Still waiting on a bed! She was told she would start treatment 3 days ago. Frustrating. I can’t imagine how low her platelets are at now but they said it was only an emergency is she started bleeding.

Wow I didn’t know they could find out mutations from blood. That is so much better and a less stressful procedure! NPM1 is positive news. I am just like you, I like to know details as it helps me feel more in control of a situation that is so unpredictable.

Absolutely do not feel bad about not going in! The last thing your Dad needs is to pick up an illness so you are doing the unselfish thing by staying at home. Hope you get some more answers today.

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That is very frustrating she is still waiting. I hope today brings better news. Are they monitoring her blood levels? It’s such a worry. It’s worrying that things need to become unsafe to get treatment. Even tho I understand why as they are pushed, and the NHS is amazing as it is, but the anxiety is very hard.

the consultant came round this morn to confirm dad is also starting the same chemo as your mum when a slot becomes available. No idea when that will be. Just all so much to take in x

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