Awaiting or considering or had a stem cell transplant, a place to share here

Is there anyone out there awaiting or considering or had a stem cell transplant, this is a place to share your anxieties, thoughts, questions or experiences if you have had one?

I had a stem cell transplant two years ago and found that tougher going than the chemo. There were so many stages before you actually got to the transplant. First a one off chemo day followed by having to inject myself with a a drug twice a day that stimulated stem cell growth. I remember it made me very ill on one day, I had a tremendous pain in my bones for about 12 hours. I was really worried until I remembered that I’d be told this might happen. Then came the stem cell harvest. That was a very long day hooked up to tubes to collect stem cells and platelets. I had to keep one of my arms very still all day so that the flow of blood didn’t get interupted and at the same time squeeze a rubber bone to keep the flow going! You needed 8 million stem cells from the harvest (4 for a transplant and 4 in reserve) but I really struggled to get 1 million out and had to come back twice more for more of the same. Even then I only made it to 4 million. They were so fed up of trying though by that stage that they decided to go ahead with the transplant anyway! The next stage was some tests on lungs, heart and kidneys. That was a very long day and I’m not sure I actually passed the tests. My ECG said abnormal but everyone ignored that for some reason…I know I failed the lung test as I was terrible at holding my breath and blowing to empty my lungs and an annotation appeared on my medical record after that about my poor lung capacity. Once all that was out of the way there was the frustration of waiting for a bed. The admission date I’d been given came and went and nobody bothered to contact me. I still had to have a picc line inserted though and have the dressing changed every week. This went on for 3 weeks with me waiting by the phone and my managers not giving me major tasks to do at work in case I had to leave at short notice. Eventually when I was having a fourth dressing change they said that I might get taken in that night but they weren’t sure so stick around. I went home instead as I didn’t have any clothes or toiletries with me and when I’d given up for the day I got a phonecall calling me in late that evening. The transplant process is fairly standard. You get some very toxic chemo and then the next day you get your stem cells back and you sit around hospital waiting to get ill and then waiting to get better when your stem cells start repairing you. It was a long 3 weeks and the bits where I couldn’t swallow because of the pain were particularly grim. I lived off jelly and ice cream for about a week! There was also a constant flow of antibiotics and other drips at all times of the day and night so it was difficult to get much sleep and I felt very very tired. It was Wimbledon fortnight though so I had that to distract me most days. When they said I could go home, I was very relieved.

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Wow, thanks so much @Franko you seemed to recall your thoughts and feelings as if it were yesterday. Take lots of care.
How do you feel about going ahead with the stem cell transplant now?

It’s easy to say I’d still do it but at that point it was probably easier to make that call. I didn’t have any complications from the chemo and was in quite good health. It would end up being a personal decision for everyone. If I have to have one in future, it might involve a discussion. Last time I just agreed as I didn’t feel I had any choice.

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Hi Everyone I am waiting on a stem cell transplant. They were hoping to do it late May or early June but my para proteins are raised and I have been given an appointment for 16th June to have them repeated. If they are still raised I will need more Chemo in tablet form and obviously my transplant will be put back until the bloods are back down. Has anyone experienced this? Thank you. I am new to this forum

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Hi @Danmar a great big welcome to our forum, you have found exactly the right place on our forum.
It must be an anxious time for you and we are still in Covid times as well.
We are here to share experiences and support each other and I hope someone will be able to answer your question.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Please let us know how you get on I look forward to hearing more about you.

Pleased to share my experiences; for those who don’t know me, I had AML, which I was treated for but which relapsed after about a year. I then had more chemo and my only hope of a cure was a SCT from a donor.

It is a tough gig, from things like the pre-treatment ‘talk’, where the medical team tell you everything that can go wrong (but hopefully won’t), through conditioning (hard!) then recovery, which is often long and slow with setbacks such as infections along the way. However, it can work. I won’t go into more detail here, but am happy to answer questions from other patients if needed.

I’m more than 5 years out now, have met my donor, who is now a good friend, and was planning to go up Kilimanjaro with him this year (Covid has stopped that for now). Pretty good going given that I could barely get out of bed after treatment. The treatment does impact on you, but I am thankful that it saved my life, and gave hope to my family.

If I could give one bit of advice it would be to break things down into a day/week at a time and be thankful for the little gains; ‘babysteps’ when added up can mean you and your family eventually get back to a more normal life.

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Hi Everyone. I had a STC 10 years ago. Yes, it was really tough going, but it was worth it to get where I am now. I feel I was quite lucky in that I was staying in a hotel opposite the hospital, so I was able to just go into the ward every day and leave after the chemo. My husband was with me, so we treated it like a very bizarre holiday - we ate out when I was up for it and spent several nights at the theatre. I too remember “waiting around to get ill” and fought it until the last, when I was told that they were admitting me. I was fortunate that I was “on site” so didn’t have to hang around like @Franko , waiting for the phone call, as I was checked every day. I’d like to think that treatment has advanced since my transplant, but no doubt it will still be tough- any treatment is tough, but the benefits are rewarding. I would advise anyone to compile a list of questions (Pros and Cons) and if you are getting positive feedback, then go for it. Of course, we are all different, and react to drugs differently, so nobody can give us guarantees. I wish the very best to any of you facing this right now and I’d be happy to answer any questions, honestly

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Hello Everyone,
I had my allo SCT August 2008 @ 48. I had AML & the worst probability of it recurring otherwise.
Yes it’s tough, but worth it!
You have to listen & follow your team’s advice. They definitely know what they’re talking about. All you can do is be determined to make it, put all your effort into surviving. Let them worry about everything else.
As to how many days post SCT you’re in solitary, well, let’s face it, it’s a minuscule amount of your future life, or the one you’re hoping to have.
The best advice prior to transplant was from my Haematology nurses, & it was to put on as much weight as possible before transplant.
The best advice from my Transplant Team @ University Hospital Southampton, was to take baby steps.
Good luck.

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Hi Ihave a particularly
difficult to treat Splenic marginal lymphoma.Over a 3 year period I had a splenectomy ,5 different courses of chemotherapy ,numerous bouts of pneumonia & sepsis.As They were struggling to stop the lymphoma recurring after each different courses of chemo,It was told my only option was to have an autologous SCT. Over a. 6 month period I failed many of the criteria but still felt it was worth trying to persuade my medical team to put me forward for an SCT.Eventually I persuaded them Iwas prepared to take the associated risk having no other option.When my cells were harvested they only managed to collect 4 000 over a period of 5 days.The transplant was tough as my general condition was not very good but the day they told me my stem Cells were working was a truly memorable day. I had to spend a prolonged period in hospital but persuaded the staff to allow me to use an exercise bike which made me crawl out of bed each morning only 3 mins at first but gradually built up.I am convinced this is how I managed to avoid a chest infection or pneumonia.After discharge I found progress slow but eventually made progress .The SCT gave me back a better quality of life,however I still continue to suffer bouts of severe infection but between times I was able to enjoy life.My best piece of advise would be to keep as mobile as possible I know without keeping mobile during the recovery period I would not be able to enjoy the simple pleasures in life Good luck to all going forward I now celebrate 2 birthdays my own birthday & my stem cell birthday ,!!!

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Thanks @Thelimes for your experience of having a SCT.
You make sure you celebrate both your birthdays in style!!!