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Original poster

Bone marrow transplant

139 replies

21jlb · 01/12/2020 15:35

Hello,
I have been told today that I have an issue with my blood and have to have a bone marrow transplant to try and stop it turning into leukaemia. Has anyone had this transplant before? If so I could really do with some advice on this.
Thank you.

OP posts:
Original poster
21jlb · 17/04/2021 19:18

@MyNameIsArthur that is really positive to hear and I’m pleased you’re doing so well.
Everything is set for me to go back in on the 2nd May so just lots of routine appointments at the minute. Not long to go.

OP posts:
Original poster
21jlb · 18/04/2021 16:28

@MyNameIsArthur have you travelled abroad since the transplant? If so, how long after was you able to?

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MyNameIsArthur · 18/04/2021 22:30

Thank you and I pray that you will do well too. Wow! 2nd May! It's finally happening. How are you feeling about it? How are your family? How have you been since your chemo?

No, I haven't travelled abroad since my transplant. That was initially because of my immune system after transplant but also because of other reasons - many hospital appointments, further treatment, personal stuff and then the pandemic. My passport has expired now but may head abroad next year. It might be worth you asking the question on the Facebook group as I know it's come up on there before

Original poster
21jlb · 19/04/2021 20:22

@MyNameIsArthur I’m feeling ok and positive, ready to just get it done and the long hospital stay out of the way.
I’m nervous but know what to expect the process to be like following the chemotherapy. Just hoping that I recover in a timely manner to get home. And hoping for not too many infections.
My family are ok, the kids aren’t looking forward to me going back in but they’ll be fine.
I’ve been ok following the chemo. Was feeling tired, but not so bad now. A few aches and pains around lungs and kidneys so think I’ve picked up slight infections but luckily not too bad.

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MyNameIsArthur · 21/04/2021 21:45

I'm glad you are feeling okay and positive and I understand how nervous you must be. I think the average stay is around 3 weeks following what others have said on the fb group and my own experience. Much depends on how quickly your blood counts come back up and general recovery. I hope that it all goes as well as it can for you and is quickly over and zero or few complications and infections!

It will be an emotional time for you all but I think everyone will pull together and be strong for you and youll get through this.

Good to hear you feel you've not been too bad after the chemo. Will you have another bone marrow biopsy before your transplant? Have you sorted out everything you need to take in with you? Flowers

Original poster
21jlb · 23/04/2021 16:02

@MyNameIsArthur no I haven’t got another biopsy due at the moment (thank god!) just the usual organ checks and radiotherapy preparation.
Think I can handle 3 weeks, that’s what I was there for last time but around that time I’d had enough and was ready to go.
Yes I have everything, pretty much the same as last time. Good thing is I’ll have a tv that works (hopefully) and a DVD player so that’ll help pass the time. The WiFi there is awful and last time the little bedside tv didn’t work on the ward. But I’m in my own room this time around.

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BillieSpain · 23/04/2021 16:31

Very good luck @21jlb, we are all still rooting for you x I am sure this will be an enormous relief to get over and done with Flowers

Original poster
21jlb · 23/04/2021 16:35

@BillieSpain thank you x

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MyNameIsArthur · 25/04/2021 21:17

Hi I understand you being relieved you're not having another biopsy. After my first one I insisted on sedation for further ones! I didn't realise you were having radiotherapy. It's not something I had when I had my transplant.

I was the same. Three weeks was enough for me! The first week was the chemo and I felt okay then. The second week I was quite ill. The third week I started to recover as my blood counts came up and so I got the green light to go home thankfully.

Glad you've got everything ready. I hope the tv and DVD work okay . I think the Wi-Fi is meant to be better in your isolation room. Is not long now! Am counting down the days with you now along with everyone else here on your thread! We are all thinking of you and wishing you all the best Flowers

Original poster
21jlb · 26/04/2021 18:53

@MyNameIsArthur thank you, and I have really appreciated all of the advice you have given along the way.
I’ll keep you updated with how I’m getting on Smile

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MyNameIsArthur · 28/04/2021 21:27

Hi that's okay, you're welcome. I'll be glad if what I have said has in any way made your journey just a little bit easier. Thank you for keeping me updated about how you are getting on. I understand if I don't hear from you for a while as you may be devoid of energy and feel exhausted and unwell during part of your time in hospital and after. I'll be here though if you need anything and you will be in my thoughts. Don't forget to enquire about ice lollies to try and stave off mucositis ! I think it depends what chemo drugs you will be taking. Do you know yet which ones you will be having? Flowers

Original poster
21jlb · 30/04/2021 14:15

@MyNameIsArthur I’m not sure what ones I’ll be given. They do tell me, but I’m pretty much just going with the flow and taking what I’m given. When I was there before they regularly went around with ice lollies so I’ll be sure to indulge.
Yes your advice has been very helpful, it’s been helpful to get an idea of what to expect from someone who has been through it themselves rather than just reading medical pages.

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MyNameIsArthur · 01/05/2021 21:43

I think that's all you can do really. Just go with the flow and rake what's given. They're the experts and will take good care of you. I'm glad what I've said has been helpful and has given you a bit of an idea what to expect. I can't believe it starts tomorrow. It's finally here! I will be thinking of you and pray for your treatment to be a success and for you to be home again soon with all your family, i will await updates as to how you are getting on, but only if you feel well enough to do so. You take care. All the best

Original poster
21jlb · 04/05/2021 09:48

@MyNameIsArthur well a great big spanner has been thrown into the works now. Came in on Sunday but they want to reschedule as I have an infection on my lung, they don’t feel it’s safe to go ahead at the moment. Still in hospital at the moment on antibiotics and should hopefully know more today what’s going to happen going forwards when the doctors have met. Don’t know how long it’ll be delayed by, don’t know if I’m going home or staying in. Such a shame as I got all geared up for it. Hoping for some good news today, but we’ll see.

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BillieSpain · 04/05/2021 11:47

Oh no.

Hoping so much for good news for you. Hopefully it can all go ahead. I hate waiting for things like this, you must be so frustrated.

Original poster
21jlb · 04/05/2021 16:00

@BillieSpain they think it’ll be in roughly 2 weeks. Hoping to be discharged in the next couple of days before coming back in.
Just got all geared up to come in, said bye to the kids and now have to do it again.
It’s a nuisance but I’ll get there finally!

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MyNameIsArthur · 05/05/2021 20:10

Oh no! I'm so sorry to hear that! How awful for you. I can understand the frustration you feel. I get why they have to reschedule because once your neutrophils drop to zero after the chemo, your immune system will be vulnerable to any infection so they cant risk it with a chest infection. Is horrible for you though as mentally you have prepared yourself and as you say, you told the kids. What did they say? I hope they can give you a firm date soon for your rescheduled admission Flowers

Original poster
21jlb · 07/05/2021 11:07

@MyNameIsArthur my date has been rescheduled to the 5th June now. It’s the closest they could get all of the timings to match up. Disappointed that it’s so far away, and I’m going to be in hospital for my son’s birthday.
The doctors said on the Tuesday as my infection markers had gone down they would have been happy to start but they had already got the donor to stop their preparation.
I was in hospital from the Sunday to Thursday and have been sent home with antibiotics.
My son had a cold at the beginning of the week so not sure if that triggered it off.
I would have been off work for 3 months before I’ve even had the transplant, then the recovery time, I’m going to be off for such a long time in total which is also worrying too.
Luckily they are letting me work from home until I go back in for the transplant.

OP posts:
BillieSpain · 07/05/2021 12:34

Oh @21jlb, you are coping so amazingly well in the face of adversity. I so admire you.

You have a firm date now, we must concentrate on the positive. A month from now this nightmare will be being dealt with.

Take the time to really care for yourself. DC's and DH can take a back seat from now on in the lead up to hospital, concentrate on you.

I hope you are being supported properly. Much love Flowers

Work can not penalise you for having to be in hospital and recovery.

Original poster
21jlb · 07/05/2021 15:33

@BillieSpain thank you.
I am very lucky to have my husband, and family nearby who have been so supportive and helpful with the kids and appointments.
It has been a bit of a whirlwind and I do worry, but trying to be as positive as I can just to get it over with and get back to normal as much as possible afterwards. x

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MyNameIsArthur · 09/05/2021 22:28

Hi there am glad you've got a new date but understand your disappointment as you had got all your ducks in a row for your previous date . Am sorry you will miss your son's birthday. Am sure he will understand. Could you do something to celebrate his birthday before you're admitted? It's a shame they werent able to hold on a bit longer to see if you would be okay to go ahead with your initial date.

Glad you're back home for now anyway . It's possible your son's cold triggered it. Is always the way when you have school age kids. You end up catching whatever germs they bring home. I don't suppose it's possible to isolate from your family at home.

Your work sounds good and am glad they are supporting you.

I feel for you. I know how hard this is. Not just the treatment but managing everything else too, and with the pandemic on top of it. BillieSpain is right. You need to focus on you and not worry about anything else such as family and work etc. They will all still be there when you come out of hospital. Your health is most important so just concentrate on thatFlowers

Jannetra17 · 10/05/2021 11:27

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MyNameIsArthur · 15/05/2021 10:36

Hi hope you're okay. Thought maybe you might be interested in this

www.gresham.ac.uk/lectures-and-events/lymphoma-leukaemia-myeloma

Original poster
21jlb · 15/05/2021 14:19

@MyNameIsArthur thank you for this Smile

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MyNameIsArthur · 31/05/2021 08:24

Hi! Hope you're okay. Are you still on for the 5th?