Well got a bit of disappointing news today. My last bone marrow test has shown that the MRD has come back saying positive after 2nd round of chemo.
1st round MRD was negative so this is a bit of a setback.
Gotta get 3rd chemo of some description but not sure when I’ll be starting as my counts have to come back up a bit yet 
x x x
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Hi TimeE
How did your 2nd dose of chemo go ?
Hope you’re doing ok x x x
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Hi @Fifimac
Oh I’m really sorry to hear that. You can’t have been geared up for or expecting that after the negative result from the first round - it must have been a crushing disappointment. I remember when I learned I had to have a Stem cell transplant (because of a poor prognosis due to the RUNX1 gene.) I had just been expecting my next biopsy result, but got hit with the gene news immediately after, and I have to admit, I had a bit of a cry, and felt so frustrated and scared.
But my consultant pointed out that I was lucky (I certainly didn’t feel it right then) because there was still treatment I could have. And you’re in that position too. There are other treatment options. But it’s not an easy situation to adjust to, that’s for sure.
Unfortunately, the road from diagnosis to remission often seems to have a couple of unwanted bumps, as you may have noticed in all the posts on this forum. It never seems to be a completely straightforward journey for anyone. But the good thing with bumps is that usually you go over them, and feel uncomfortable for a bit, and then all is well again shortly.
But (insert fruity adjective here) Acute Myeloid Leukaemia, eh? It comes uninvited into our lives and causes utter misery and havoc. I truly understand how you feel, and send you a virtual hug over the ether. X X
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It certainly was a bit of a blow but like you’re saying there are other options available. It’s sounding like I need to get this next chemo to achieve negative MRD which may lead to a Stem cell transplant , I’m just not sure if I need negative MRD or if it still remains positive does that mean I can’t have Stem cell transplant ?
Question for my Consultant , well one of my questions !!
You’ve done amazingly well @Fullofbeans, considering the mutation you say you have. Great news , I’m glad it all worked out for you
Take care, hope your hubby is feeling better now too x x x
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I can’t say in your particular case @Fifimac, but I have read of people having a transplant when they haven’t reached complete remission. I imagine that’s because the transplant chemo kills off the host bone marrow anyway, in preparation for the donor cells.
I’m sure you must have so many questions for your consultants. Unfortunately we do have alot of time to think about these things! That’s one of the hardest parts, isnt it,?
I’ve definitely been lucky in my recovery, @Fifimac. My brother was a tissue match, and it must have been a very close match because I haven’t been troubled by Graft-versus-host-disease. And I’ve just been lucky generally- after the very bad luck of getting Acute Myeloid Leukaemia. And of course, the marvellous team looking after me have done their huge bit too. It does seem to be a fairly treatable disease these days. My consultant’s first words after telling me the diagnosis was, ‘This IS treatable.’
At the time, I was rather perturbed he hadn’t said, ‘curable,’ - but I discovered afterwards that most doctors don’t like that word, because they can’t of course make promises years into the future. But if you can hang on to that word ‘treatable’, it helps.
Yes, my husband is better now, thanks. And home tomorrow! Can’t wait.
Hope you’re having a gentle day.
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Hi @Fullofbeans , thanks again for your very informative reply I’ll have my questions ready for my Consultant on Wednesday.
So glad your husband is keeping well and on way home. You can enjoy some belated celebrations.
Take care x x
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Hi @Fifimac
Just thought I’d ask how you’re doing- but please dont feel pressed to reply if it’s not a good time during your treatment. But I hope everything’s on track for you. X
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Hi @Fullofbeans
Nice to hear from you
I am doing ok thank you, on my next chemo and have a video call with Transplant Consultant next week.
How are you ? Hope your husband is enjoying being home again and is keeping well😊 x x
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Am so glad you’re doing ok @Fifimac, and good news that you’re having a discussion with the transplant consultant soon. Hope the chemo isn’t making you feel too rough?
My husband’s had a great month home thanks, and is off again tomorrow, would you believe? Our life flies by with this month at home/away malarkey. I imagine the time hasn’t been exactly flying for you. I hope you’ve been managing to distract yourself adequately? X
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Hi Guys sorry for the delay in replying but not been feeling too good.
An update I was admitted 28/12/22 & discharged 30/01/23 had first cycle of chemo. Had all over rash which which we don’t know what caused it seems to be a toss up between the chemo or an antibiotic I was given at the same time, as well as the rash it caused my face to swell up even my phone did not recognise me!! Also had fungal chest infection.
Good news I am in remission so the chemo has done its job.
Anyway next week off to the QE in Birmingham for consultation about stem cell transplant and readmission for second cycle of chemo at my local hospital could also be the back end of next week. Will hopefully find out more on Tuesday as I have an appointment @ Haematology clinic for for more tissues sampling & blood tests.
Take care all
X
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Hi @TimE. It sounds as though the last 6 weeks have been really full on! I’m so glad the chemo did it’s job, however you must be exhausted and glad to be home!
I hope you are taking things easy and being looked after well.
Good luck with all the tests next week and when you feel ready, please let us know how you are doing X
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Yeah its been a rollercoaster of time & my emotions have been all over the place.
Not sure if anyone else on here has had bronchoscopy but they gave me one, not a nice experience as it all feels like you are not breathing as you loose all sense of breathing & swallowing. This was to try & identify the infection in my lung because of condition they tried flushing my lung to analyse it. Also had kidney problems they as slowly coming back to normal. Sorry don’t want to appear that I moaning I guess these are all related to the treatment.
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Hi @TimE you are definitely not moaning, so you missed New Years Eve and the whole of January somewhere.
You have been through a tough time and I bet it was good to be back in your own bed.
Please keep letting us know how you are doing and be kind to yourself.
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I don’t think you are moaning at all. On here you can just say it as it is and that’s the value of the forum. We completely get it and all use this space to vent when we need to. If we can’t do it here where can we. I also thought your post had some real positives. Our journeys are full up highs and lows - we share them all!
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Hi @TimE
Fantastic news you’re in remission and you’ve got through the first round of chemo - well done! Am so pleased for you. That’s a big chunk of your treatment done and dusted (maybe a third?) and it’s going in the right direction. I hope you are proud of yourself for getting through such a grim few weeks so well. A nurse once said to me she’d find it hard. It IS hard.
I had lots of rashes, peeling and swelling during chemo too. I had assumed it was the chemo, as they’re listed as side effects - but maybe it was the antibiotics.
Am sorry you’ve had some of the nastier consequences of Acute Myeloid Leukaemia/treatment, with the fungal infection and kidney issues. You’re not moaning at all. These are serious problems which make you feel dreadful (and very worried.) I had different issues (with my heart and gut) and the investigations, constant discussions by medics, and the trial and error treatments really do scare you. I think it’s probably these things which make you realise the seriousness of the whole situation. It’s never nice to realise that.
I hope you manage to eat lots at home and rest up, and have a bit of fun too. You really deserve a nice break. And good luck with the stem cell transplant meeting! Be prepared for some grim old statistics and worst case scenarios though. Most people come out feeling horrified. But from everything I’m hearing and seeing, SCTs really are an effective and much improved treatment these days (which the old stats don’t reflect.) One of my transplant consultants actually muttered they were making too many people better these days, and so the pre-transplant talk needed to be updated… So take heart.
I’ll be thinking of you as you go into your next chemo round. I found this one much easier as I had a better idea of what to expect, and it was a little less vicious. I did shed a tear or ten million when I had to leave my family again though. But you’re off to the very best start by going into complete remission immediately. That’s such a good sign. And you’re holding up so well.
Do get back to us if you’d like support during the next round. Always happy to chat.
Take care and have a lovely time at home. X
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You always give such good advice and pick out the positives
This Acute Myeloid Leukaemia journey is really a rollercoaster ride , I wake up most mornings and think “ I just want to get off now “
As we know , that’s not happening , I’m trying to be grateful for everything and everyone around me, from family, friends, neighbours, and my medical team.
It is so scary and at times very difficult to remain positive.
Knowing that there are people on here in a similar position and can relate to your feelings, does help.
Have a good Sunday everyone, thinking of you all😊 x x x
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@Fifimac, I sometimes think this push from society/ourselves to feel grateful, can actually make us feel worse, because it’s so flippin’ hard to feel grateful when you’re facing the worst situation of your life! Our expectations of ourselves can sometimes be too great in the horrible circumstances. Perhaps we can cut ourselves some slack to feel whatever we’re feeling, even if it is a bit negative. Better out than in, maybe?
However, saying that, I did then go on a bit of a mission to feel positive - I used hypnosis/guided meditations to visualise myself 100% healthy in the future. It really helped convince me I could survive Acute Myeloid Leukaemia, because at one point I was convinced I wouldn’t.
I totally understand what you say about waking up and realising yet again the horror of the situation, and wishing you could get off this rollercoaster. Oh blimey, I know that feeling. I wanted to scream, cry, bellow every time I woke up. It’s an horrendous state of being. I can’t recommend attending to your mind enough, in whatever way works for you. Online counselling? Hypnosis? Self help books? Marie Curie counselling? Or just here, if that works. Because the greatest challenge for many of us, is mentally getting through these months of uncertainty, fear and sickness. It really is a mental challenge, as well as a physical one. I don’t think the consultants bear that in mind sufficiently, when you’re imprisoned in your isolation room for weeks at a time, terrified. I wonder how practices would change if several consultants from each hospital had to go through all this? Significantly, I should think. Counselling flung at us after the first blood test!
Well, I have to go pick up my son - but we’re all here if you need us over the coming weeks. Your Forum Family.
Lots of love to you, @Fifimac X
Edit: Although I realise it isnt the consultants’ fault there is no funding for counselling via their depts.
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@Fifimac @Fullofbeans - It sounds like you’ve been through the mill somewhat, so sending positive vibes and love 
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