Stem Cell Transplant

Living with and after blood cancer
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Good evening,
An hour ago I had a call from my Consultant at Kings College Hospital to inform me that I’ve passed all the tests on my Kidney’s, Liver, Heart and Lungs and am therefore fit enough to go forward with a stem cell transplant. I’m going to be put on Venetoclax pre transplant and will be admitted in 4 to 6 weeks time.
All very exciting as I’m sure you can imagine.

Question again, is there anyone on this forum who has gone through stem cell transplant? If so, I would appreciate your views/experience.
Heidi, do you have any information/views you’d like to share. This is the time, as things are going to move quickly from here on in.

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Hi @Raffles1 exciting, but I would also think I would be scared or worried.
Good question you ask and I hope someone will be able to share their experiences.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Perhaps write down all your questions and practicalities and also ask them of your treatment team.
Please do let us know how you get on and look after yourself

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Hi @Raffles1.
Yes, the 4-6 weeks will fly by now. I’m sure others will be able to share and I’m sure the @BloodCancerUK_Nurses will be able to provide you with lots of information.
Please keep us updated on how you are doing :blush:

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@Paula and @Olivia have been through the process very recently hopefully they can give you the latest up to date experiences :slight_smile:

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Hi @Bitsy.
I’m really glad you shared your experiences. It sounds like it was really tough few weeks but you got through it.
I know your post will support so many of our members :blush:

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Hello Bitsy,
thankyou for your post. Very informative and helpful. I’m glad your in remission and things are going well for you.
How long ago did you have the stem cell transplant?
I’m guessing it’s going to be approximately a year before the all clear is given. I’ll have my questions all prepared for when I see my Consultant at Kings.
I’m about to go on my 9th round of Chemo Aczadine and when I’m on my 10th round, I’ll be given Venetoclax in conjunction with the Aczadine, prior to the transplant.
I would like to keep in contact with you, if that’s agreeable, as I feel you may be able to give me guidance on my journey.
I feel that mental positivity is vital.
Thankyou again.

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Hi @Raffles1 welcome to the group.:grinning:

Sorry to hear that you need a stem cell transplant, what cancer do you have out of interest? I haven’t heard of the drugs that you are taking, that is why I ask. I realise that different cancers have different treatments. Hubby is on the radar clinical trial.You have definitely come to the right place for advice/ guidance.
The guys on here guided me through a difficult time, as my hubby has just had a stem cell transplant, using his own stem cells, due to having myeloma. He was diagnosed in October 23 and had his transplant at the end of May 24, after various rounds of chemotherapy.
As soon as he started his chemotherapy we decided to be extra careful and we semi shielded. We didn’t want him to pick up anything that could slow down his treatment or make him more poorly. It may seem extreme but it was something that we could control.After he had all the tests and we got the go ahead, I started looking at his diet. I knew I would need to try and feed him up as he is a slim man. Most people loose weight after a transplant, so again we thought it’s something we could help with. I did feed him good meals and he put on a little, but he seems to be able to eat like a horse and not put any on!! Prior to diagnosis he didn’t have any symptoms, but once on chemo the tiredness kicked in. The steroids made him bounce off the walls, but he is glad he had no other side effects up to this point.He went to harvest ( remove) his cells in April and it took 3 whole days, other than uncomfortable he says this part of the process was ok. I know a lot of people manage to do it in one day. He only has great things to say about the service, the nhs.:+1: Then to assist the stem cells he was given GCSF ( granulocyte colony stimulating factor) injections into his tummy.These did cause him to have growing pains in his legs overnight, expected, and it does subside. A lot of people have no side effects, it’s all individual with meds.His cells were then taken away to be frozen, next step was to have melphalan, ( M) high dose chemo, then have his cells put back in to engraft the following day. This was about 4 weeks later.Still feeling fine at this stage.He was in hospital now and started to feel rubbish after about 5 days. He had a very dry mouth, but no sores, good tip is ice pops, lollies and ice cream. Try to have these after the M it really helps. Then he suffered bad fatigue, no energy at all, not even to sit up in bed. Its all expected as the M wipes out your white blood cells, the neutrophils that fight infection are compromised, as are the red cells that usually carry oxygen around the body. At this point your body is at an all time low. Hubby didnt want me visiting, he needed to concentrate on him and not worry about me, also he didn’t want me to see him struggling. He had no appetite, then started with nausea, no other side effects. All he was having was fluids, but not enough. This made him feel worse, the weight started to drop off. A dietitian was very helpful, I’m still in contact with her. She has given us food supplements in the form of shakes and fruit juices. Some people I know have very few symptoms at all, it just depends how you respond. On the whole hubby says the process is tough, but we were well advised as to what may happen, so it was easier to take. He then had an infection in his picc line which is a catheter used to take bloods and administer meds. It was picked up straight away and antibiotics sorted it out. Move to day 14 and he was sent home! We were told he would probably be in 3/4 weeks. So he did really well.His bloods just started to do so well. He still looked ill as he had then lost his hair and lost nearly 2 stone. It was my job to try and feed him up. They do say that recovering at home is much better for you, they were right. Although he still has to eat more and gain the weight, mentally he is back to his old self. We are still careful and not mixing much, just concentrating on food, exercise, fresh air and hospital check up appointments.
It is a difficult journey, but swapping 2/3 weeks of hardship for a better chance at life, hubby says yes pleeeeeese.
I hope I have given you an insight but not in a bad way. We definitely preferred to know what may happen. The human body is amazing and sometimes we have to think mind over matter, and as you said POSITIVITY is key here. I am usually a glass half empty & hubby is more positive. This whole cancer journey has shook me up, made me positive and made me fight for him. I hope you have someone in your corner, as you will have lots of support from us on here. Message me anytime if you have any questions. Good luck going forward, take care…x🥰

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Hi @paula1, @2DB, @Erica

How are you all doing ?

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Hi @Olivia thanks for asking I have just had a quieter week, thank goodness, so in limbo a bit, next week I should be talking to my cardiologist.
Interesting hearing how your thinking has changed from being a glass half empty girl to a positive one and a fighter and a supporter of others on our forum.
I hope you are looking after yourself as well as look after us, look after yourselves

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Hello Olivia,
thankyou for your comprehensive reply to me regards your Husbands Stem Cell Transplant experience.
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) October 3rd 2023 and I was given a prognosis of 18 months. There were a number of issues we thought could be looked at in a second opinion at another Hospital. My Hospital weren’t keen on that, but my GP confirmed that it is my right to have a second opinion if I so wish.
My GP referred me to Kings College Hospital in November 2023 and they are excellent. From the outset, they wished to look at Stem Cell transplant for me, so imagine my elation when my Consultant from Kings rang me to tell me the good news last Wednesday
Naturally it hasn’t been easy as I had to have tests on my heart, lungs, liver and kidneys.

I won’t labour you with the details of the tests but they are extensive. On Monday, I will be told the schedule leading up to the transplant.

If anyone is not satisfied with what they are being offered, then I emphasise, it’s your right to have a second opinion.

Regards support, I have lots of that from my family and from friends both in the UK and in Canada, Texas and Dubai.

I will try to keep the forum informed of my progress. Things are speeding up now and it’s getting exciting.
I continue to find life to be joyous and I’m sure I always will.

Did I mention I did the walk of Light and raised £1600 for Blood Cancer. Had my team with me and this too was full filling.
And in May, I went to see the Who at the Royal Albert Hall. Roger Daltry has held concerts there for the last 20 years supporting the Teenage Cancer Trust.

So whilst I have Chronic myelomonocytic leukaemia (CMML), I try to do my bit in the fight against Cancer.

Thankyou again Olivia for your reply, it’s been most helpful.

All the very best.
Raffles.

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Wow @Raffles1 what an interesting, inspiring post and lots of emotions I am sure.
Yes, I believe it is your right to get a second opinion either through you consultant or your GP.
It certainly seems that you have had a lot of tests on your organs.
As for your worldwide support and aren’t family and friends priceless.
As for your Walk of Life and what an amount you raised.
I have never seen The Who live and I bet they gave some performance, I am singing along to their songs as I type this.
I was listening to an excerpt from the Old Grey Whistle test the other day and Bob Harris always introduced them as Pete Townsend’s band and interviewed him, whereas from the time I always thought of it as Roger Daltrey’s band.
I will be thinking of you, yes, please do update us when you can, look after yourself.

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Hi @ Raffles1,

Thankyou for a lovely response. You are an inspiration and need to carry on with the mindset that you have. It’s good news that you have a chance with a stem cell transplant. It may well be that you sail through it without many side effects, but get through it you will! :kissing_heart: If there is anything any of us can help you with, we will surely oblige. We wish you all the best with your stem cell journey and will be thinking of you. It is people like you that makes me more positive and optimistic, so glad you found this forum. Keep us updated, please look after yourself and get others to help you too…… Olivia xx

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Hi Olivia
Haven’t heard anything from you lately, how’s hubby doing after his transplant?
I have been to see consultant today and need to decide which maintenance treatment I would like to be on.
Ax you know I’m on the Radar trial at the
Moment so if I decide to stay on it there are lots more med to take and weekly visits to the hospital. They said it will keep me in remission for much longer. The other option is to come off the trial and take lenidomide as standard treatment and just the odd visit for check up.
Such a lot to get my head round.
Hope you and hubby at ok
Love Paula xx

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I don’t envy your dilemma @Paula1.
If you feel just talking to someone might help, they cannot make the decision for you, but verbalising sometimes helps me, the Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourself and please do keep posting

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Hi @Paula1,
So nice to hear from you, and hope you are still doing well. I suppose you have a big decision to make.
You need to ask how much of the myeloma has gone since the transplant and exactly how much more time in remission you will get if you stay on the trial. More importantly, also how many more drugs would you need to take if you stay on the trial. If it’s drugs you have had before, you did seem to cope well with them and may be worth it. I suppose if I was you I would probably stay on the trial and see how the meds go and the appointments. If it doesn’t work for you , then you can go onto standard treatment. How’s work going? Are you still feeling fit and healthy without any issues? Sorry not been in touch, life gets in the way. My friend lost her husband , so trying to spread myself around.
Hubby really struggled with eating after the transplant and was feeling sick all the time. The anti sickness patches really helped and he stayed on fluids only for a while. He is now on solids but small amounts. He is still struggling to put the weight on and had a dietician to help. A plus is that he feels much better in himself as he is getting a bit more energy and stamina, each day. He was very low as he wanted to run before walking but now he sees improvement, his mood is better also. It’s a long journey but we are both focused and eager to travel as far as needed. He is due a bone marrow biopsy soon so we will find out how the transplant did. I hope you got the results you wanted.
Please keep in touch, it’s great hearing from you, don’t rush any decisions.Take care.xx😘

Hi @2DB , @Erica , hope all is well.xx

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@Olivia
Thank you for asking I’m doing ok :slight_smile:
Hope your doing ok too and looking after you with kindness

Sounds like hubby is progressing after transplant. It takes a good few months to be back to eating and getting energy levels up.
Stripping back your immune system and rebuilding it takes a lot of energy and time.
Look back where he was 6 months ago and now to see how far he has come and tell him to be kind to himself :slight_smile:

@Paula1 a lot of weighing up for you and what suits your quality of life.
Take your time to look at everything
I’m grateful that people like you are doing these trials and hopefully introduce new regimes in the future.

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Hiya sorry for taking a few days to reply, I have decided to stay on the trial. My blood gets put into a computer then it randomly chooses which meds I will continue on. My bone biopsy showed that I have a little minimal residual disease still left. Will know more when I see consultant on wed.
Much appreciate the support off you guys on here xx

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Oh @Paula1 please do let us know how the consultants appointment goes on Wed.
Perhaps write all those fears, questions and practicalities down first, it helps me.
Look after yourself

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Hi @Paula1 ,
I know there are varying degrees of remission but minimal sounds good. Let us know what the consultant says. I think you may still have a few more check ups than normal, but surely can only be a good thing. Hubby has definitely not regretted being on the trial. It’s people like you that help things move forward much quicker. The treatments for myeloma have come a long way and hopefully will continue to do so.
We just need something not as invasive or as drawn out as the STC.
Keeping everything crossed for you going forward.
I second the part about folk on this forum, truely kind and inspiring.
Hubby due his biopsy soon , so keen to know how successful his treatment has been. He is in a high risk category we found out, so may not have responded as good as we wanted.(:crossed_fingers:)
Sending a virtual hug, take care…xxx

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Yes, virtual hugs to you both @Olivia and @Paula1 xx

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