Hi there
Myeloma is as individual as the person who has it
Your experience will be different to mine
Stem cell transplants are tough going
High dose chemotherapy destroys your immune system and your stem cells rebuild it.
But they are doable
Here’s my story
I have myeloma
I was 49 when I had my first stem cell transplant in 2017 after 2 lines of chemo as first line wasn’t lowering my numbers
Harvested enough cells for two transplants which are frozen ready for when needed
I was deemed fit enough for first transplant even though I really wasn’t well through both lines of chemo and managed to half my protein to 25
I have boney disease my kidneys were on the verge of collapse at the start and I was extremely aneamic
I have to say I found the first transplant very very hard hard enough to say never ever again.
Relapsed in 2021
Started DVD tolerated this regime really well
Deemed fit enough for second transplant which I agreed to
Second transplant 2022
Came through this one better than the first I decided to sleep through it although I had hyperemisis (being sick) couldn’t eat
It was decided I would do better at home mentally to recover once my neutrophils had reached 1.0
I’m 14 months post Stem cell transplant with dara maintenance until next relapse
Fatigue is on going
I have had the best response to dara plus transplant
My protein and light chains are less than 2 and my bloods are good for me.
Morning @GingGing, I do hope you’re doing okay. I saw your post in a different thread, and I’m tagging you here just in case this one is useful for you at all. Please don’t hesitate to reach out to our Support Team if you’d like to talk things over at all (0808 2080 888 or support@bloodcancer.org.uk).
Hi there. I was diagnosed with Acute myeloid leukaemia (AML) in March. After a rather unexpected and eventful first round of the ‘traditional’ chemo, I have just finished two cycles of Aza & Veneclax (much MUCH better). I’m now being prepared for a Stem cell transplant transplant, before the Acute myeloid leukaemia (AML) bounces back. This really is a vile disease (or at least, MY particular mutation is). There have been so many twists and turns - my sister is a full donor match but was ruled out initially, due to her health problems. Then an urgent screening of my 3 adult children for likely haplo Stem cell transplant. Then, the donor team deemed my sister fit after all! So back to a full sibling match. It has all been quite a ride so far…
This week, I have had all the pre-transplant investigations, signed all the scary consent forms, and the countdown has begun. Admission is planned for 6th September and Stem cell transplant around the 14th.
I find this forum thread so helpful, have read the experiences of others and feel encouraged to hear that there is life ‘on the other side’. My prognosis is very poor indeed, without a transplant. So, despite being afraid, i know I have to put on my big girl’s pants and do this. There really is no Plan B for me.
Hi @Ledgell,
Thank you so much for taking time to get in touch again. I hope you are doing okay today?
It must feel quite surreal amongst, i’m sure many other emotions, now to have your date for transplant set in stone. It’s likely your next few weeks on the lead up will be a busy few with various appointments and planning.
Try & remember that what you have already been through is strength behind you to power & push through this next phase- you & your big girl pants will conquer this brilliantly!
I’m certain you will gain some real shared experiences from others within the forum who have walked on similar paths, but please do also know that should you ever need someone to talk things through with our helpline is very much here for you- 0808 2080 888.
Wow - not to long to go. I can imagine a range of emotions.
It’s so great that you are able to share your experience with others and we will all be here to support you as well.
Please keep posting to keep us updated on how you are doing
Hi @Ledgell I know we often describe it as emotional rollercoaster, but that describes it so well for you and your family.
Yep, the consent talk and papers sure are scary.
I think that the unknown and suddenly having a timetable is super scary.
As long as you have a supply of big girl pants and us to support you and the Blood Cancer UK support line telephone number then you are half way there.
Yep, making the most of the next couple of weeks sounds a good plan to me.
Please keep posting how you are.
Be kind and spoil yourself
I’m pleased to hear that you have had all the tests and now have a date for your Transplant !
It doesn’t seem like it just now but September will be here in no time.
I honestly felt like I was never going to get to Transplant and now I’ve been home for two weeks and the Transplant is 6 weeks behind me.
It was a rough few weeks but to be honest I did sleep rather a lot after the transplant, I had very little energy other than to go to the toilet & back.
It’s do-able that’s for sure and considering the journey we’ve had, both mentally & physically up until now … you will get through this next part of the journey too.
Please look after yourself meantime and enjoy eating the foods you like and getting as much fresh air & gentle exercise to prepare yourself.
If there’s anything you want to ask me , then please do … keep us posted meantime.
You’re almost there , best wishes x x x
@Fifimac and @Ledgell my mother always said that sleeping was the best medicine and I think it is true.
Good advice @Fifimac, and really look after and be kind to yourself now that you are home
Well done @Fifimac for getting through your transplant! Wishing you all the best for your continued recovery.
Also hoping all goes really well for your forthcoming transplant @Ledgell.
Thank you so much @Coastgirl , early days but I’m getting there, already eating a little bit more.
Still got bouts of nausea at times but I think that’s improving too. Energy levels still not fantastic but I’m so happy that I’m home and can potter around at my own pace when I want to.
Plenty to be thankful for that’s for sure
Just dropping in to say hello and hope you’re doing ok and that I’m thinking of you.
We’re almost at end of August so you’re admission date will soon be here. Keep you’re positive hat on, I’m almost at day 50 post transplant. I can’t believe how quickly the weeks have gone.
I know exactly how you’ll be feeling , as the run up to admission & transplant seemed like it was never coming round.
Sending my very best wishes to you
Thank you so much - am I am encouraged to hear how well you are doing.
Yes, the Stem cell transplant clock is seriously ticking now. As I write this, I am awaiting a call from my consultant with news of all my pre-transplant test results. Assuming they are all good, I shall be travelling back to Barts this time next week (6th). Conditioning chemo starts on the 8th.
It’s a strange feeling - massive anxiety and apprehension (because no-one knows exactly what my unique Stem cell transplant journey will be) but also impatience and a feeling of ‘let’s just GET THIS DONE’!! I am tired now of all the visitors and having the same conversations daily. And the huge burden on my husband, children and their families. It almost feels like the Acute myeloid leukaemia (AML) has hijacked our lives for these last 5 months and has begun to define us all. Unfortunately, there’s quite a way to go. But I am longing now to be safely somewhere ‘on the other side’.
Thanks so much for checking up on me and please do keep posting. We trust that it’s all a matter of onward and upward for us both x
Oh @Ledgell thanks so much for your post I was really impressed in your turn of phase and I think that you show the conflicting thoughts and emotions so well.
Please do keep posting when you can and I will be thinking of you.
Really look after yourself
Just reading through the thread and your planned admission on the 6th - I will definitely be thinking of you. Do you let us know how you are doing. I too am being admitted on the 6th for a biopsy of relapsed lymphoma to determine my next course of treatment one road could well be stem cell transplant so I will be following your journey with interest and wishing you all the very best . Much
@Ledgell, I really understand your feeling of ‘let’s just GET THIS DONE’!! and I hope you are encouraged by stories of those of us like @Fifimac who have successfully made it to the ‘other side’ which is the best feeling ever, even amidst the challenges to get over like the sickness and tiredness, which do improve over time. I found the minute I was allowed home where I could eat my own food, the sickness stopped almost instantly! The tiredness took a bit longer and can be a feature of the myeloma journey but not in such an intense way as post-transplant, in my experience.
I’m always a bore about this online (sorry everyone) but please do check you’ll be provided with lollies to suck during the Mephalan infusion and later during that day as it should greatly reduce your chance of getting mucositis (or the severity of it). It maybe that now it is such a standard procedure I can stop mentioning it but I didn’t know it was a ‘thing’ when I had my first transplant in 2013 and the mucositis was really terrible.
Meanwhile @Jules I’m sorry to read about your relapsed lymphoma. I hope your biopsy will be as painless as possible (not meant with irony but with the best intentions) and that you will be given an encouraging treatment plan. Relapses are always pants, I find, but it feels better to know what the next course of action will be and get stuck into that.
So I’ll be thinking of you both next week on 6th and look forward to hearing how you get on.
Hope you are now settled into your room and the conditioning treatment is under way.
You will do just fine , rest when you need to and don’t worry about sleeping a lot.
I slept for most of the 2nd & 3rd week. Its what our bodies need.
You’ll be through the other side of the Transplant process soon.
Thinking of you and wishing you well.
Lots of love & best wishes
This is SO kind of you, thank you! I am settled into my solitary confinement at Bart’s and conditioning chemo starts tomorrow. Feeling really very apprehensive now, so need to just get started.
I will update when I can.
Hope you are still progressing well, and that before you know it, you’ll have reached that milestone day +100.
I appreciate you remembering me
