Just Diagnosed with AML

[Fifimac]

Hi @Fullofbeans

How are you getting on ?

Just a wee update from chilly Scotland
I was discharged from hospital yesterday as they felt that I was getting more and more anxious due to being in the ward for so long. They are right, I was getting a lot of anxious moments and that is totally not me usually.

My counts haven’t completely recovered from last chemo so I do need to remain sensible & cautious, so that is the reason I’m allowed home, so long as I follow all the usual precautions !!

The chemo has hammered my marrow they think and it’s now beginning to recover slightly , my neutrophils are just below 1 , my platelets are creeping up but very slowly.

Once the numbers are at an acceptable level , I will get next dose of chemo in preps to go for Stem cell transplant.

Such a complex illness , but luckily I am feeling fine and with all the love & support from my family & friends I’m doing just fine

Best wishes x x

[Fullofbeans]

Hi @Fifimac

Really good to hear you’re home for a bit, feeling ok, and have all your friends and family giving you some love! I bet you’re overjoyed to be out of that hospital! Really well done for getting through what I know is an arduous and awful time. Enjoy that fresh, beautiful (and cold) air.

So no digging holes in the garden, petting llamas, playing knife throwing games or eating sushi for you for a little while! The fact that you’ve nearly got to one with your neutrophils is good. Almost there. Mine took a while to climb too.

And then the last round before your Stem cell transplant. You have got through the worst, @Fifimac, and the bulk of the hospital time. Soon you’ll be recovering from the Stem cell transplant and thinking, ‘Blimey, what just happened to me?’

Anxiety must be completely natural given the circumstances… You’ve been so brave and stoic up til now, I’m not surprised some anxiety has wheedled it’s way in somehow. Sitting around, alone, in a hospital room doesn’t help. Everyone’s different, but I felt safer at home, strangely - despite the dog licking my face, my son going to his germ infested school, and the many miles between me and the hospital. I’m sure it will do you the world of good being at home with people you love, rather than waiting for neutrophils to rise in hospital. I really hope you have the loveliest time. It is SO deserved.

Feet up, snuggly blanket on, some delicious food and drink if you can manage it - and relax and enjoy!

Lots of love to you. X X

[Nichola75]

So good to have an update @Fifimac! I’m really glad you’re home

[Fifimac]

Thank you so much @Nichola75 & @Fullofbeans

I feel so much happier now , more calm & content.
Cooking what we fancy for eating basically all the wee simple pleasures in life

Appreciate your comments and interest in my progress , so pleased to have connected with you both.

Onwards & upwards for sure

Lots of love & best wishes x x x

[Erica]

Great news you are home @Fifimac I always think the there is nothing like my own bed.
As you say you feel so much happier now , more calm & content.
You are so right that just cooking what you fancy for eating :certainly is one of the simple pleasures in life
Yep, onwards and upwards at a steady pace is good.
Look after yourself

[Fifimac]

Hi @Erica

Thank you so much
Staff in hospital do an amazing job and I’m so appreciative of them all, but nothing beats home comforts.

Hope you’re well , thanx again.

Love & best wishes x x x

[Nichola75]

The simple pleasure I’m life mean so much don’t they! Enjoy every one X

[TimE]

Hi All sorry for the long delay in replying. Quite a lot has happened to me. On 13/02/2023 I was admitted for my second cycle of chemo. This went as well. as can be expected and was discharged 27/02/2023. I was not feeling too well and on on Wednesday 01/03 was re-admitted due to high temperature, there was no side room available so I was put on a bay. My stomach was really playing up and I was diagnosed with C-Diff caused by the antibiotics on top of this a patient was admitted to the bay next to me and it turned out he had Covid which I caught, so a double whammy. I had various appointments at the QE in preparation for a stem cell transplant but my kidneys are not working properly and my transplant was cancelled due to this, despite being readmitted for extensive treatment of my kidneys. Any way I m due to start a tablet based chemo on Wednesday as maintenance treatment I am told this treatment is new and was only licensed last October. Hopefully this will work and given time my kidneys will recover so I can have the stem cell transplant.
My emotions have been all over the place but I think I now have them in check.

[Fullofbeans]

Oh @TimE , I’m so sorry to hear all this - what an horrendous time you’ve had! I’m not surprised your emotions have been all over the place.

I’ve had both C diff and covid - but a good while after transplant, so my body could cope. I cant imagine how horrendous having both must have been, straight after chemo. What a nightmare! And kidney problems too.

It’s so very good to hear that a Stem cell transplant could still be on the cards though. And this new treatment sounds interesting. Please let us know how you get on. And hope you are taking it easy and recuperating.

Very best wishes.

[Erica]

Oh @TimE wow, one nasty single or double medical whammy after another, what you have gone through and it must be such an emotional roller caster too.
I really hope the tablet based chemo will work and give your kidneys time to recover in time so you can have your stem cell transplant.
Be kind to yourself and I think it is very natural that your emotions are all over the place, look after yourself

[Nichola75]

Gosh, that’s a lot to happen in such a small space of time. It’s no wonder your emotions are all over the place, you must be exhausted, both physically and emotionally.
Take this time to recover and look after yourself and I have everything crossed that the stem cell transplant isn’t to far away.
When you feel able to, please keep us updated on how you are

[Fifimac]

Hi @ TimeE

How are things with you now ?
I was so sorry & diappointed to read that your transplant is not going ahead at the moment.

I was booked to go into QEUH GLasgow on 9th May and transplant planned for 17th May , but had a call from my local consultant yesterday to go and see him.

Long story short , my MRD is still showing positive after last bone marrow test , it’s not very high, but in the bigger picture , Glasgow feel it’s too high at the moment to go ahead with Transplant. I have to go back into my local hospital wk beg 8th May to receive more chemo which will hopefully reduce MRD to an acceptable level for Transplant.
They have said the Transplant would not be beneficial to me with the way things are at the moment.

Like yourself I am really disappointed as I had my head round things and was in two weeks shielding in preparation for it.
They have not cancelled my Transplant , just delayed it until I finish next chemo🙏

I really hope you get your Transplant too , it’s such a rocky road we’re on , it’s so tough when you don’t always get the news or results you were hoping for.
I’ll keep everything crossed for you , and I hope you’re feeling better

[Fullofbeans]

Oh @Fifimac, I’m so sorry to hear about the delay. It takes a lot to psyche oneself up for these things, so delays can be excruciating. And of course it adds to the worry, and you also have yet more chemo to endure. I’m really sorry to hear that.

Will be thinking of you on the 8th, and I hope you’re feeling physically ok whilst you wait.

Very best wishes X

[Fifimac]

Hi there

Luckily I am feeling fine physically thank you. I have enjoyed being home for the past month or so and was getting psyched up for transplant.
It was just so disappointing as we were so close to being admitted
We have been in shielding for the past week too.

However, it’s like everyone says … another bump on the road. I’m not looking forward to more chemo but if that’s what the medical team feel is necessary to get me to where I need to be then so be it !!

I would love to be able to thank my potential donor aswell , she must have been getting herself prepared mentally & physically too, then she gets the news.

Anyway, I’m determined to get in the right mindset that this next chemo will , if not eradicate this
“ wee gene “ then at least reduce it to the level needed for transplant.

I know lots of people will have gone through similar problems, it’s like a punch in the guts but gotta get right back up and carry on.

I’ll do my best to keep you updated. Thank you to yourself and everyone that’s wished me well.

Have a great weekend, I hope you’re still enjoying life with your hubby & son. You so deserve to

Fiona x

[TimE]

Hi @Fifimac

Sorry to hear of your setback. Like me your transplant is still on the table just delayed. As you say we are on rocky road and longest roller coaster ride of our lives.

I’m OK really I am on a tablet based maintenance chemotherapy (azacitidine) the tablets are called Onureg. Initially I had really bad sickness on my first dose a call to. my local medical team got that resolved by changing sickness medication and a quick visit to the Unit to have some IV based anti sickness. Since then I have found the tablets do affect my stomach quite badly it’s very vocal!!. But other than that I cannot complain at least I am at home.

Hope you get your transplant all the very best.

[Fullofbeans]

I don’t know what to say, @Fifimac - you’re being so stoic in the face of such a terrible disappointment and worry. Galling to have done a week of shielding too - as if you haven’t had enough shielding already! I hope you’ve managed to get outside and to see people since hearing the transplant is delayed.

Really pleased to hear you’re feeling physically ok though. The past month or so at home must have done you a lot of good, and without you knowing it, readied you for the next round of chemo.

Yes, absolutely - picture your blood and stem cells becoming perfectly healthy when you’re having that chemo. Our minds are the great untapped resource, I’m sure of it. It can’t do any harm visualising positive outcomes, that’s for sure. And our brains do control our bodies on an unconscious and cellular level, we know that - so why not on a conscious level? I went down this route, and I can definitely say it helped my mental health, if nothing else. And that’s so important in and of itself.

If you do have the energy to update us, we’d all welcome hearing from you, @Fifimac. Another thing I visualised (thanks to a stem cell transplant guided mediation) was a crowd of people from my past, present (and future) standing around me, cheering me on. It was quite an emotional thing to imagine. Should you do something similar, please know that all of us here stand with you too; cheering you and willing you onwards and upwards. You’re not alone. We’re here if and when you need us.

Thank you, @Fifimac - I am very much enjoying the time with my husband and son. When you get through this and come out the other side with the worries behind you, I’m sure you’ll find the same: Life is different; it’s hard to be the same ever again - but everything is very much sweeter, after such dark days. You deserve this too. I’m sure you will get there.

Well, I have found things to say after all. (I’m rarely ķnown for being brief and wordless, it’s true.)

Thinking of you, @Fifimac.

Lots of love. X

[Fifimac]

Hi @TimE @Fullofbeans @Erica @Nichola75

Hope you’re all well !
The latest news from me …

Transplant delayed in May , had another round of Chemo which again I tolerated well thankfully.
Unfortunately about 2wks after treatment stopped , I developed an infection in my Hickman Line. I spiked a temp of 39 degrees, for a couple of days I actually felt like a patient. The Microbiologist suggested trying to save the line so I was on IV antibiotics, they were also locking antibiotics into my line.
Eventually it was decided to take the line out, which I was happy with.

Forward a few weeks and my transplant admission date is 19th June.
The last chemo has reduced my MRD good news.
However my donor is going on holiday so admission date has now been moved to 4th July !!

3rd time lucky lol.
Thankfully I am feeling fine and at home again.

Love to you all

Fiona x

[Erica]

Oh @Fifimac what a lot has been happening to you and then the transplant being delayed again and again till the 4th July.
I really feel for you.
Fingers and toes crossed for you for the 4th July.
Look after and be very kind to yourself and please keep posting.

[Fullofbeans]

Great to hear from you @Fifimac! And such good news that your MRD is much reduced and you are now infection-free and awaiting your Stem cell transplant.

Sorry to hear you were poorly with an infection, though. They can be grim when in such a vulnerable state of health. My Hickman line also got infected (after my transplant) and yes - not nice! I hope you’re recuperating now. And that you’re at home too, surrounded by home comforts and love.

Such bad luck with the Stem cell transplant dates, but I reckon you will be extra lucky to have stem cells that are freshly back from holiday, feeling all rejuvenated and ready to do their multiplying magic in your bone marrow! And on the 4th of July too - an auspicious date. Listen hard and you might hear fireworks as the little cells find their new and perfect home, and celebrate their good luck…

Look after yourself over the next few weeks, @Fifimac. I had about 6 weeks at home before mine, and I tried to build my leg strength up (my muscles deteriorated previously) and I was told to eat lots of calories. Normally, I just nibble tiny amounts, so this was a terrible blight on my days and a chore. NOT! I stuffed myself with all sorts of goodies in fear of this once in a lifetime instruction being retracted, and the time flew by, ha ha. I hope you can find some fun in these strange days leading up to your new life, and that the days pass not too anxiously.

We’re here if you need some company.

Lots of love X

[Nichola75]

Hi @Fifimac. Thanks so much for the update. It surely has to be 3rd time lucky!!! Everything crossed again X