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Hi .. I am about to start my stem cell transplant journey- cyclophosphamide and G-CSF injections next weeks and harvesting the week after. I am dreading it , I have been treatment free for a month so was anxious to start the process but now its here its a different story. Any advice or tips and what is the average remission time ? My consultant said 2 years but Im sure it csn be a lot longer for some.
I had my transplant just over a year ago, am now in remission and doing well on lenalidomide maintenance. I’m back to a full and active life, including going to the gym three times a week. So first bit of advice is to hold onto the hope that life will return to normal!
The harvesting process wasn’t too bad. I got backache from the GCSF injections and bone ache seems quite common. I took a friend with me for the harvesting because you’re hooked up to the machine for quite a few hours and need to keep your arms still. So she helped me with my audio book, talked to me and fed me sandwiches!
People’s experience of the transplant itself are very different so the best advice is to take one day at a time and trust the staff because they know what they’re doing and will get you through it! My experience was not bad at all. I had 2 or 3 days of feeling pretty rough with sickness and diarrhoea but recovered quickly and my appetite returned before I came out of hospital. Coming home after hospital is the best feeling in the world and, whilst I was tired and needed to sleep more during the day, I didn’t feel ill.
In terms of remission time I think it depends on lots of factors and it’s difficult for them to say so i don’treally ask. My understanding was average 2 to 3 years but I was told that being on lenalidomide maintenance drug can give on average an extra two years of remission. I’m on a Facebook support group where there are examples of people getting much longer remission times. My consultant said he had 250 patients who were currently 5 years in remission and some who were 7 years. One lady on the support group was 18 years in remission without maintainance drug or further treatment, but I think she’s an exception rather than the rule!
I wish you well. I felt anxious too but many of my anxieties proved to be unfounded . I hope it’s the same for you.
Glennis x
Like Glennis I found the worry worse than the reality when it came to cyclophosphamide and harvesting.
I ended up going straight from the cyclophosphamide infusion to deal with a medical emergency for my mother in a different hospital, which was do-able (although I could have done without it!). The biggest consequences of the cyclophosphamide were a reduction in paraprotein (👍)& my hair coming out in clumps 14 days later (👎).
I didn’t have bone pain from the GCSF, but I didn’t have obvious bone lesions either which could be relevant.
The apheresis was painless, & I found I had one to one nursing, which was helpful. Wear loose clothing to easily enable someone to help you , and retain your dignity should you need to go to the loo. It can take 2 or 3 sessions to get the required number of stem cells, so don’t expect it all to be over after the first day (although it might be).
Statistically the UK Myeloma XI trial demonstrated that the average remission time – without daratumumab and without lenalidomide maintenance was 30 months. With lenalidomide maintenance it was 58 months. No one knows exactly what the average is when daratumumab is added to induction treatment for the brilliant reason that so many patients are still in remission (or have stable disease)
Thank you both for replying, I think its the fear of the unknown and Im hoping it isnt going to be as bad as I imagine. My 2 youngest children are 11 and 13 so I am hoping to be on the mend as quick as possible although I have pre warned them I will be in hospital 3-4 weeks. I have tried to keep a normal lifestyle for them and hope to carry on working full time up until the admission for transplant. My paraprotein at the last check was 2 , this was a month ago. I was tested again last week and get the results Monday, I am thinking it may have risen as had no treatment for a month. My hair is just past my shoulders so I am thinking of a shorter style , does everyone lose their hair ? I do have a wig in preparation. Once in remission after the transplant is there any diet recommendations or supplements you can take to help remission be as long as possible? X
Hi
My situation is different to yours as in I’m older, now 70 and dont have children to worry about.
I had my stem cell transplant in June 2023. I’m high risk so as expected I didnt receive full remission. I have bone damage, bone lesions and compressed fractures hence a bad back…but I’m glad I went ahead with the transplant. Im on the RADAR drug trial so am still under close supervision.
To answer some of your queries.
I had almost shoulder length hair which I got cut short…discovered I had ears!!! I had a wig which I didnt like, it was itchy so got a selection of headgear- theres a big choice online. However when my hair began to thin and fall out I shaved my head and didnt regret it but I can understand that might be scary for your kids.
My consultant isnt keen on supplements as in pills or vitamin pills etc.
However I asked to be referred to the hospital dietician who was very helpful with tips of what to eat etc.
After the recovery time post SCT I went to a couple of nutrician courses at my local Maggie’s centre, again very helpful.
This past while I’ve been making home made smoothies to try and boost my immune system. Personally I dont like veggie/ green ones but really enjoy fruity ones.
I use some fresh fruit but often bags of frozen fruit from the supermarket. I make them with either fruit juice (not from concentrate) or coconut water. I have no scientific evidence they work but I feel good and touch wood my propensity to catch a cold seems to have diminished.
Good luck with your SCT – everyone is different but personally I think if you listen to your own body, that’s a good guide. My only other piece of advice is to take any help on offer either from friends and family or professionals
Take care.
Hi gc,
Thank you for replying, it’s good to hear you are doing well. I was staged at a 1 by my consultant but have had a plasmacytoma on one vertabrae which needed 6 radiotherapy sessions and I also have bone damage to tops of my legs and sternum. It was a freak coughing episode that broke my L1 vertabrae which lead to my diagnosis which I believe was early as my paraprotein was just 14. I do have a lot of lower back pain but I put this down to my osteoarthritis. I am trying to eat healthy and lose a little weight but worry is making me want to eat and eat. I aim to eat a lot more fruit and veg and cut out as much sugar as possible after my transplant.
Hi myelomamum,
You have mention that you would like info on food and supplements.
Firstly, are you taking bortezomib (which is also called Velcade)? If so, then I would advise a lot of caution about taking supplements. Some supplements, such as green tea extract and vitamin C tablets, interact very badly with it and can stop the bortezomib from working. However, you may be prescribed vitamin D tablets: they are fine.
You mention that you want to lose weight. Be careful what you wish for – an SCT can cause some loss of appetite or nausea. It will pass, though, of course, but you might lose weight from it.
For a while when I was going into remission, a dietician was advising me to stuff myself with biscuits to keep my weight up (and I didn’t even have an SCT), as I had been nauseous and had lost too much weight
In terms of healthy eating in the long term, here is some high level advice:
https://healthtree.org/myeloma/community/articles/what-to-eat-if-you-have-multiple-myeloma
However, don’t beat yourself up if your diet is not perfect. It took me around 18 months to slowly, bit by bit, move over to a healthier food lifestyle.
Regards
Rabbit
Thanks Rabbit,
I have had no medication for 4 weeks now as plans are in place for the transplant.
Harvesting planned hopefully for this coming Monday.
I seen my local consultant today, my next visit with her is not until August when the transplant is done. My paraproteins were down again from 2 to 1.3 which i am really pleases about and kappa igg light chain now in normal range. All seems to be going in the right direction so this is why i want to eat as healthily as possible. I have also read about the benefits of fasting.
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