Stem Cell Transplant Shopping/Packing List

Hi @Anita, I am so glad you have joined the Forum as the support here is fantastic. Transplants are very daunting but it really helps to talk with those who have been through similar treatments and your Clinical Nurse Specialists will provide you with lots of written and verbal information. I would recommend writing down any questions you have and you can ask them when you next have a clinic appointment. You can also call or email the Support Services Team Blood cancer information and support by phone and email | Blood Cancer UK and we can talk through any questions or worries you have. Take care Gemma

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#nbk112. I had mouth ulcers during just 1 of my 6 3-week Chemo stays in hospital. Thorough dental hygiene and mouth washes helped me avoid them. Loss of appetite and loss /changes of taste - yes lots of these I’m afraid. I found it very difficult. But the good news is that it corrects itself once the Chemo and follow-up medication is over. Crisps, chocolate and fruit for some reason were always unaltered and palatable. Bingo ! You don’t need a better excuse to indulge in a few treats !!

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Hi, Fullofbeans - I was only diagnosed with myeloma at the end of August this year. I spent 4 weeks in hospital to get it under control. Unfortunately I have several compressed vertebrae in my neck, middle and lower spine caused by the illness so can only walk short distances with the aid of a stroller or crutches. I currently take shed loads of pills every day and have a chemo injection once a week together with steroids. I do not have any adverse reactions to the chemo as it must be a very mild dose so the one given for the transplant will be a bit of a shock.

Thank you so much for your advice and encouragement I just want to get back to anything near to normal as soon as possible. Before I became ill I was working full time and my boss has been extremely sympathetic. I do miss my work colleagues which I keep in touch with but not sure if I will be well enough to return. I have been in touch with a local myeloma group but their next meeting is not until 10th Jan, so any advice on this rubbish disease would be great.

I hope you all have a lovely Christmas.

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Hi @Anita, not due to blood cancer treatment but I have several, healed fractures and compressed lower vertebrae so I can empathise in part to the pain you must be going through.
A lot has gone on for you in a few Covid months, it must have been quite a shock for you.
We are here for you and so is the Blood Cancer UK support line.
It must be such an isolating time for you and I expect you really miss your work colleagues.
Please keep posting

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Hi @Anita

Your timings match mine - I was diagnosed with Acute Myeloid Leukaemia in Aug (2020) and I had my transplant in Jan this year. I’m a year in front of you.

What you’re going through is an horrific situation to get your head around, in so little time. You’re plunged into the treatment before you’ve really absorbed the reality. It’s very overwhelming. And you have the prospect of a Stem cell transplant hovering over you, over the Christmas period too. NOT the season of joy. I really feel for you.

I wish I could help you with the myeloma side of things. Someone will hopefully come back to you on that. But my understanding of things is that you could return to work. Myeloma can have long remissions - especially after a transplant. And returning to work - if that’s what keeps you happy - is such a healthy and productive thing to do. I realise I’ve had a different illness, but my consultant said to me yesterday that he enjoys seeing people getting back to work, and that’s their aim - to ensure functioning people who can do what makes them happy. I’m sure your consultants would be happy to discuss your goals and how they can help you aim for them. That’s part of their job. And I’m sure that aiming for what’s best for you is only going to help you. Positivity and determination don’t count for everything - but they certainly add something significant to the mix. After all, our minds have an enormous influence over our bodies and our health. Aim not just high, but towards the highest of goals if you can.

Another thing I found was that time sped past very quickly during the transplant and recovery. Although 6 months of treatment and 6 months of recovery and 18 months off sound so much on paper, they’ve actually felt no time at all. It might be that you’re either trying not to go back to work too soon, or you’re back at work before you know it.

I’ll check back here tomorrow, if you want to ask anything else. Please do.

Thinking of you.

Fullofbeans X X

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Hi Erica, yes the pain before I went to hospital was excruciating but now under control thank goodness, I don’t ever want to go through pain like that again. Christmas this year is just me and my husband but my daughter wants us to go to theirs on Boxing Day. There will be several people there up to 6 people excluding us from 2 different households, one of them is my 14 year old granddaughter who we brought up since she was 8 she is now living with my daughter - her auntie (it’s a long story) I have had 3 jabs should I still go?
xx

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Oh @Anita only you can answer your dilemma. Heart v head, emotional benefit v health safety and all that.
How could you feel safe tomorrow, perhaps it is about saying your needs, I don’t know.
Please let us know what you decide.

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Erica
I have asked everyone to take a test which they have done today and they are all negative. They will take another tomorrow morning and if that too is negative then we shall go. Need to be with loved ones and to do things to take your mind off the illness for at least a few hours.

Thanks for your support.
xx

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@Anita I am really impressed with you saying your needs to stay safe and relax tomorrow.
Enjoy your day, you deserve it and I look forward to hearing how it goes.

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Hi Erica
Well decision made by COVID! One of the household was sent home from work yesterday after testing positive so will be staying at home today. I am really disappointed but these are the times we are living in.

Thanks for keeping in touch.

xx

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Well @Anita I am sure you are so disappointed, but when Covid strikes so near to home it makes us realise it knows no boundaries.
My son, who lives locally, was also tested positive for Covid last week.
Safety is the main thing.
Look after yourself and keep posting.

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thank you for your post I am going in on friday for chemo and my transplant is on the 20th Jan 2022 so I found it really useful to read. thanks again.

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Join the transplant gang, they are such a lovely, supportive lot and have their own thread @nicolas.
Please keep posting so we can support you and good luck for the 20th, look after yourself and be kind to yourself

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Me again @nicolas the thread is called ‘Awaiting or considering or had a stem cell transplant, a place to share here’

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Ah glad something was useful, @nicolas.
Btw, my transplant was on Jan 20th last year, and I’m doing really well now - so let’s hope the date is just as auspicious for you.
Will think of you on the day, and send the very best of luck over to you on the transplant ether. Take care.

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Hi Fullofbeans
Had stem cell transplant mid April and from the second day was sick and couldn’t eat anything and all medication had to be through a drip and pump connected to my stomach. I also had to had food through a drip as could not keep anything down. Was discharged from hospital 10 days ago and began to feel a lot better. Unfortunately at the weekend experienced severe sickness and diarrhoea. I am still being sick and only drinking water. I think I may have a bug. I am unable to take any pills as I am sick shortly after taking them including anti sickness pills. Will this sickness ever go, I am feeling really depressed as I am too weak to do anything.

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Oh @Anita, I’m so sorry you’re feeling so poorly. Yes, it WILL go. I was as sick as a dog in hospital too, and got much better and recovered my appetite when at home. It does sound like something has happened to interrupt what sounds like a similarly good recovery for you at home. Have you spoken to your consultant? It’s best to keep them informed of any changes in your health, especially if you can’t take your tablets, which are so important at this stage. I should speak to your medical team ASAP. But yes, the utter fatigue and sickness do go. It sounds like you may need a little helping medical hand though. I really hope they can help you get on top of this quickly. X

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Oh, @Anita how really lousy and debilitating for you.
I agree with @Fullofbeans brilliant reply, I know you are feeling so rotten and obviously so, so weak but your severe sickness and diarrhoea should be discussed with your medical team because any goodness you had is just being drained from you. They might be able to help in some way
Be kind to yourself and when you feel up to it please let us know how you get on, thinking of you xxx

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Anita,
Sorry to here you are struggling, I got very sick in hospital and had 3 days struggling to keep anything down or in, it at the time did feel a little bit like the end but, I got through it.
Keep focusing on how you will recover and all the good stuff and you mind will help the body.
Do speak to your medical team like lots have said as they may well be able to help.
When I came out I used to eat 6 or more times a day, as I had small meals and regular so it helped my body recover, perhaps they will help.
Take care
Adam

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Hi Fullofbeans & Erica

Many thanks for your replies, it’s so good to have your support.

Good News! My sickness has stopped! It looks as though it was a bug which I think was caused by reheating some rice. My husband had the same meal and he was perfectly fine but I think that in my condition I am prone to any bacteria out there. So for the next few weeks at least only fresh food for me and definitively no left overs the next day.

I am drinking lots of fluids and eating mostly cereal which I am keeping down thank goodness. I am going to make a small pan of vegetable soup today so fingers crossed.

One thing I am still experiencing is a very dry mouth, it’s almost like my salivary glands are not working properly. Did you experience anything like this and if so does it get better over time?

Regards

Anita

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