Husband diagnosed with AML

[Toadmum]

Plenty of bubbles, and a good night sleep.

Posting again in my new personal journal. Sleeping better than I was last week, as is the patient which is good. Accepting lots of help.

Day 5 of chemo almost done and he still looks pretty ‘well’. I’ve thankfully not been exposed to cancer in my immediate life, and it’s been such a learning curve in the last week. I guess partly because of how fast you have to act with Acute myeloid leukaemia (AML).

Today he has started on a preventative anti-fungal as neutrophils are lowering which we are somewhat pleased about. Isn’t it strange the things to cling onto?

Daunorubicin finished for this first cycle so that was a mini high five moment and his consultants have already been adjusting his chemo plan for this first round to add in a different chemo drug. Again, felt grateful that they are monitoring so closely.

Looking forward to a nice dinner at home, and some TV and relaxing.

Wish anyone reading a positive evening, and hope your day has been as good as can be.

[Fullofbeans]

Hi @Toadmum

It’s probably quite a useful thing to use these threads as a sort of journal - I think many of us subconsciously do that. Journal away! We’re following yours and your husband’s progress and we’re listening.

Really great that your husband is ok so far with the chemo. I had one chemo dropped that I had started - as results of gene mutations and proteins (or something) came in, they knew that particular chemo was no good for me. Perhaps it’s for a similar reason with your husband?

Yes, it’s an eye-opener, being plunged into the Acute myeloid leukaemia (AML)/cancer world for the first time, isn’t it? Language, procedures, drug names, ward routines, the medical hierarchy, hospital menus - we unfortunately start learning about it all. It can be very over-whelming, and upsetting because we didn’t ask to have knowledge of this world, but it is thrust upon us. The shock of it all does get easier…

Am glad to hear you’re having a soak, and something to eat and a bit of relaxing tv. Hope you have a good sleep and that both you and your husband have an encouraging day tomorrow.

Thinking of you both. X

[Toadmum]

Thank you. I will keep going. Maybe it will be useful in future should someone else stumble across / be going through this process.

Today is day 6 of chemo. Slight ‘excitement’ yesterday when he had a reaction to the preventative anti fungal medicines and came in to a nurse shaving patches on his chest so the ECG could hold better. All was fine, symptom was indigestion. I asked whether he would be given a different or same tomorrow, and they said he might get a different type but consultant may just choose to monitor during.

This morning he has signed his consent for the stem cell donor search process to kick off. & yes I think you are right about the change in chemo. They decided not to give Mylatarg and instead are giving Mitostaurin (?) as he has the FLT3 gene and I believe that is also why they are kicking off with the stem cell search. His sibling will be tested later this week.

I didn’t visit this morning so that I could do some exercise. I have felt particularly emotional today, some triggered by a tough morning with the kids so trying to go easy.

Does anyone have experience of how long it can take to locate a stem cell donor, as well as what that process looks like from day 1 to being in a position to do stem cell, should it be an option?

Sending good energy and love to anyone reading this.

[SarahMum]

Hi @Toadmum

Well done you on getting some exercise in - it is soooooo easy to get sucked into the hospital vortex so it is important to take some time for self care. I have definitely been guilty of always being there but did take time out to get out on my bike (which is where I find my peace and strength)

My daughter has that mutation (as well as some others) so they started her on Midostaurin. She would have regular chemo and this was then followed up by 2 weeks of taking Midostaurin (4 tablets twice a day). The tablets are huge and stink?! Some say they smell like weed - I got more of a gone off beer smell from them.

Blood Cancer UK | Intensive treatment for AML

My daughter took them after round 2,3 and 4 for 2 weeks and will now take them for 12 months (maintenance therapy) I am sure this will vary for different individuals so best to speak to he consultant on what the plan is for your husband.

With regard to Stem cell transplant there are others on here that have gone through the process and can talk more about their experiences. Timeframes can vary hugely- the hospital should have a dedicated transplant team who will come and talk to your husband and you about donors/timeframes and work up tests etc. This will be further down the line after chemo treatment so try not to worry. The transplant teams are amazing- they tend to just get on with things in the background and then will come and tell you the plan.

Take good care and stay positive

Sarah

[Toadmum]

Thank you, Sarah!

I did type out a big message and then my phone went funny.

Dear Diary,

Today is day 7 of chemo. So far, the side effect is a sore throat. Still eating a lot and drinking a huge amount of water, at least 6 litres.

A relatively quiet day today although I think he’s had some more blood, and preventative anti-fungal medicines alongside chemo.

I was reflecting that I didn’t think a huge amount about blood donations and the people who regularly give blood until the last few weeks. I feel so grateful, but also ashamed to say it. I will get back to giving blood regularly to help someone else.

I’ve still felt quite emotional today. I met friends for coffee this morning which was really nice, and spent some time at home. I have visited this afternoon and will go home soon.

Only other thing to note was that we spent time with a few trainee doctor and our doctor, running through some practice diagnosis’ so that they could see an Acute myeloid leukaemia (AML) patient in reality. I hope it will help them to diagnose someone in future, should they cross paths with someone who might have leukaemia.

I shall update tomorrow, on day 8.

Sending hugs to all who need it.

[Erica]

Hi @Toadmum I agree I didn’t think about donating blood until nobody wanted my blood!!!
II am so, so glad that you took time out for yourself today and friends are priceless.
Ensuring you don’t get overtired I think is so vital too.
It must have been fascinating to be with a few trainee doctors and your doctor.
Also the best training they could have, that’s how I learn by true practical case studies.
I think perhaps most of us need wonderful hugs and I send a supply back to you, thank you. xxxx

[Toadmum]

Thanks Erica, I appreciate it more than you know.

It really was wonderful to see them practicing the diagnosis process. We all agreed however at the end when we discussed my husbands symptoms that it is very lucky that we decided to go to urgent care / A&E because I don’t think the GP would have automatically checked the full bloods to the extent ran by A&E, at least not so quickly.

I’m still not entirely sure what made us decide to go because he didn’t appear to be super poorly, but grateful for whatever made us decide to do that every day.

Some reading, heated blanket and hopefully lots of sleep and a fresh day tomorrow.

[Fifimac]

Hi @Toadmum

How are you today ?
Your diary entries remind me of my own time going through chemo last year.
It’s a definite roller coaster ride and at times extremely scary but honestly there are also positives on the journey. Meeting ( virtually ) all the wonderful people on this forum for instance
None of us ever expected to be going through this but it’s the cards we’ve been dealt so we are all plodding along as best we can.
Here is my transplant journey ( after having 4 cycles of chemo )

My first meeting with the Transplant Consultant was in February 2023, it was via video call as the Transplant unit in Glasgow is about 90 mins away.
She went over the whole process and explained everything in great detail. I had previously
read “ seven steps to transplant “ a book that is available from your ward and it is also on the Anthony Nolan website, so I had a kind of idea what she was going to tell me.
She did finish the call by saying “ if you think the transplant process will be easy then you haven’t understood what I’ve told you today “
( one of those scary moments ) She also said it could take 3-4 months at least to get to transplant.

I received a telephone call in March from the Transplant Co-ordinator to say they had found 2 x potential donors. Both female, aged 25 & 27 yrs old. One was an 11/12 match and the other 12/12.
I must admit I was very emotional when she called as I was always terrified that maybe there wouldn’t be a match for me ( scary moment ) and now there’s a positive again … there were two possible matches. They were going with the 12/12 match.

Now that the ball was rolling I was told my transplant would go ahead in May !!! ( scary but exciting time )
I was getting prepared for this and had started to shield in preparation to go to Glasgow Transplant Unit , when I received a call from my local Consultant to say my last bone marrow test had shown that my MRD was showing up as positive ( another scary moment ) so my transplant would be postponed in the hope that they could get a suitable treatment that could hopefully get me into remission or reduce my MRD to a suitable level to enable me to have the transplant.

This was a really scary time as transplant had been in touching distance, so felt like having the rug pulled from under me !
It was decided that they would try a different chemo which had been suggested by a leading Acute myeloid leukaemia (AML) Consultant in Guys Hospital , London.
On the day I should have been admitted for Transplant I was going back into my local hospital to begin the next cycle of chemo.

Fast forward a few months and thankfully my MRD had been reduced to a very low level
( not complete remission ) but the transplant team were happy for transplant to go ahead.
Wow !! I was relieved I can tell you. Next date for transplant was agreed for middle of June. However
I received a call from Co-ordinator a few wks before to say , it wasn’t going ahead as the donor was going on holiday so it was now being moved to July.

So basically it was 3rd time lucky and my transplant did go ahead on July 12th this year.
I am now 114 days post transplant and physically I do feel really good thankfully. ( a definite positive )
Mentally, it’s slightly different. I have always been a very strong person and always felt in control. I now have moments where I feel anxious and I worry more.
I was extremely lucky and suffered very few side effects from all of the chemo and the transplant itself went relatively smoothly aswell.
I am trying to think as positively as I can, also to appreciate that I am feeling physically stronger and that I’m able to get back to some kind of new normal.
I’m also grateful to all donors ( especially mine ) without them , we wouldn’t be getting this second chance of a potential new life. ( another definite positive )

I would say to you and your husband , there are so many ups, downs , twists & turns to get through on this journey but you will get there. Always ask as many questions of your medical team as they are the experts. Leukemia is so complex but the Haematologists are amazing and are always working away in the background to get us the best possible treatments.

Right !!! I think I’ve written a short novel !!!
I really wish you & your husband the very best.
Keep posting when you can and let us know how things are going. This forum and all the lovely people involved in it are brilliant. We’ve all been through similar experiences and still are.

Much love

[Toadmum]

@Fifimac this is so informative, and I can really see the highs and lows. I am going to come back to this as we get a little closer towards this part of our journey.

We’re on day 8 of chemotherapy today, so another day forward. Two more days to go, and then he starts the midostaurin.

I went for a facial this morning, which was really nice. I’m visiting this afternoon but just reading my book and hanging out, as you do. He’s having a few cat naps, and is planned for some blood and platelets at some point later.

So far, the only side effect is a sore throat which we are grateful for now but are so aware that this will likely soon be changing by the hour / day. Still eating and drinking lots, albeit not much from the hospital food which leaves a lot to be desired .

[Toadmum]

I also forgot to add that I am doing OK ish. Sometimes good, sometimes sad depending on the hour.

I have awful moments where I think about life without him or worst case scenarios and I find sometimes that I can’t stop my mind from spiralling which then results in me crying or playing out scenarios in my head.

It goes without saying that I am trying SO hard not to do this!!!

[Fifimac]

Hi @Toadmum

I was trying to give you a rough idea of the timings of my transplant journey but got a bit carried away, lol.

Oh my heart goes out to you , I often worry for my partner as the carer on this journey as he is always so strong for me. I know he is feeling as worried as I am.
A good cry really is needed at times the pressure you are under is tough. Have you got a Maggie’s Centre nearby ?
Talking to someone out with the family is sometimes easier and in Maggie’s they really make you so welcome.

Look after yourself much love x x

[Fullofbeans]

@Toadmum @Fifimac @SarahMum Just a quick ‘hi’ and hoping you are all ok today - and sending my love. X X X

[Fifimac]

Hi @Fullofbeans

Lovely to hear from you how’re you getting on ?
Has the weather improved down your way ?
It’s rather damp here but quite calm. I am in Kirkcaldy so you’ll be able to visualise the area roughly as you’ve been here.

I’m still waiting on my bone marrow results , first 2 parts are back and they’re all good. Nothing showing in the blood. Just waiting on MRD result now
Consultant on video call the other day was pleased with my progress, chimerism has dropped slightly but due to cyclosporine being reduced he said this is normal and he expects it to go up and down. At the moment he’s not unduly concerned.

Hope you’re hubby & son are both well

Hope everyone has a lovely weekend @Erica @SarahMum @Toadmum @Ledgell

Much Love x x x

[GemmaBloodCancerUK]

Dear @Toadmum
I just wanted to join in to offer my support as your family goes through this diagnosis and treatment. How is your husband doing today? How are you and the kids also? As Lauran mentioned, if you need (or when you are ready) we are here for a chat about the disease, treatments, side effects or indeed what ever you need Blood cancer information and support by phone and email | Blood Cancer UK
Also, I wanted to send some resources for you:
Practical support for carers | Blood Cancer UK
A carers’ guide to supporting your loved one through blood cancer treatment | Blood Cancer UK
From partner to carer overnight | Blood Cancer UK
Acute myeloid leukaemia (AML) practical support | Blood Cancer UK
I do hope this is not too much information but I did want to make sure that you have support and resouces as well.
Best wishes to you all
Gemma

[SarahMum]

Hiya @Fullofbeans

Thanks for the check in. All good here thanks . How’s you?

@Toadmum - awww your post really hit home with me. When my daughter was first diagnosed I held everything together and then one morning I got up super early, jumped on my bike, pedalled like a mad woman for miles and miles. I then stopped at a quiet bench looking out over the estuary and I cried and cried like I have never cried before. I couldn’t stop - it felt like I had held everything together and it all came out.

I took a deep breath and then said out loud, ‘I refuse to believe that this cancer will take my beautiful girl.’ At times of stress I still say it in my head. This can prove easier on some days than others. I also realised that I needed to seek some support for me. @GemmaBloodCancerUK kindly booked a call with me - it was so supportive and helpful to speak about what was happening, treatment etc. I will always remember that call Gemma- thank you

I also sought support in the MacMillan centre that is part of the hospital. I was offered and took up counselling. Those sessions have proved invaluable too. A space for me to talk about my fears and worries as well as look forward to what’s coming next. At the end of each session my counsellor would always ask me to describe 2 things I was going to do for me which helped me to realise the importance of looking after myself in all of this.

Also the support and virtual love offered by individuals here on this forum has been phenomenal. I am in awe of all these lovely people who have a blood cancer yet take time to check in and offer support. I am blown away by these amazing people

As described, every day can bring new highs/lows - just go with them and put your trust in the experts.

We are having a chill weekend at home. Up to the hospital on Monday for bloods and a bone marrow biopsy. This one will go off for MRD so more waiting but we are getting pretty good at that . And do remember…

[Toadmum]

That’s great news, will be thinking of you whilst you wait for full results.

[Toadmum]

Thank you, @GemmaBloodCancerUK I will definitely call next week for a chat.

Husband is doing well, day 9 of chemo. He’s in good spirits and full of positivity, which is the most important thing here.

I’m doing a bit better today - been busy on kid related activities which helps the time to pass. We’ve been trying to keep their routine and activities the same, just with me doing things whereas sometimes, it was dad previously.

kids are doing pretty well, all things considered. Our daughter is 6 and is quite happy to talk about daddy being in hospital unwell, and staying there to get better. She doesn’t currently seem frustrated by it, and has been happy to visit. We’ve also managed to get into a groove with some things like him calling their Alexas in their bedrooms so that they can chat independently to me arranging face time etc which has been helping. Our son is 8 and it has been hard for him. He has ups and downs both within a day, and within the week - a bit like all of us I guess! He doesn’t seem concerned about his health but more the inconvenience to his own immediate life, or just missing him being at home. He also wasn’t sure if we were divorcing as he has had friends whose parents no longer live together, and that was his natural conclusion bless him.

[Toadmum]

Thank you. I’m trying to keep re-framing my mindset to look for all the positives in life, and just be grateful that he has a chance to get better and that does help somewhat.

I have visited the Macmillan team in the hospital, both for me but also to get some information on what / when to tell the kids and they were lovely. I’m also just trying to be honest about how I’m feeling at a particular time, rather than try to keep going or power through / ignore the feelings that crop up.

He moves to a new hospital next week ready for monitoring and preparation for next cycle so a fresh adventure. We’ve also both mentally been working through the ten days of chemo as our goal, so need to reset to something new.

I’ve had a nice day today, the kids have been in good spirits and I’m just leaving now to visit him, after a day of sport and hanging out at home. Thankful for all of the help that everyone is offering, both on this forum and in person. It has made such a difference and feel very privileged to receive all of your support and be part of your journeys. Have a lovely evening.

[Erica]

Oh @SarahMum, @fullofbeans, @Ledgell and @Toadmum wow, that was powerful for me @SarahMum and I really related in another situation where I was a carer, to what you said. It was also very visual for me seeing you on your bike pedalling for all you were worth for miles and miles and then sitting on a quiet bench looking over the estuary and crying, crying like you had never cried before
No wonder you couldn’t stop, you had been holding it together for yourself and also Danae.
I was at home on my own when my husband was in hospital and one night I had visited him I got into the car and it would not start, it just bleeped at me and that was my enormous sobbing session, that is so vivid for me and it was about 30yrs ago . I cannot even remember how I got home.
Then a poor woman rang up from his personnel dept. and I just started sobbing uncontrollably at her.
Yes, I have found Macmillan very supportive too.
Enjoy your chill out weekend, it’s so important.
Such beautiful wise words, thanks so much.
Enjoy your snacks
Keeeeeeeep posting, you guessed it, it is Strictly night

[Erica]

Yes, @Toadmum I think routine and their activities are so important for youngsters.
Yes, I think that it is so natural for you all to deal with things so differently.
My son definitely went into himself and I cleaned the house for England. It was definitely before Alexis and he did not have a mobile phone with him.
You raised a very good point that he asked if you were divorcing, you never know what another person is thinking, which is why I think open communication is so important.
Yes, it is so important to ask for and receive help.
Yes, I feel the support on this forum and Blood cancer UK is priceless
I think you have a lot on your shoulders so be very kind to yourself as well.