This topic contains 9 replies, has 5 voices, and was last updated by 
Hi
I am in cycle 4 of my chemo treatment which has been going very well. My consultant is thinking of moving onto phase 2 of my treatment involving harvesting my stem cells from my bone marrow, freezing them and then hitting me with heavy dose chemo before transplanting my cells back again. I am both excited and terrified by this. For those of you that have been through this, can you share your experience? I’ve been told that the chemo will see me spend 3 weeks in hospital. Have people been very sick through this process? Did you have to spend additional time at home afterwards? All comments welcome. Thank you.
Hi
I was diagnosed with mm this time last year, I was very poorly, straight onto the 3 combo chemo drugs for 6 month and then stem cell transplant and high dose chemo in april.
2 weeks in the care or the fantastic nurses at Freeman hospital newcastle…it wasnt fun but I got thru it with a little sickness and a lot of fatigue. Saying that the guy in next bed to me was on the identical treatment and he absolutely sailed through it, so we are all different.
I was allowed home after 2 weeks when my bloodcount was up.
I went home and spent the next month really tired and fatigued..but as the weeks went on I became stronger both mentally and physically…2 months after coming out of hospital I did a sponsored walk up a small hill at the lake district for our local blood cancer charity.
ime 6 month into my recovery and touch wood have had no complication and feeling good….
its a bit of an emotional rollcoaster as the treatment in intensive by nature but you will get through it as we have no choice do we
be positive and good luck …. you will get through it:)
Mick 48
Sorry nearly 8 months post treatment…time flys 🙂
Hiya Bernard, yep, been there, done that.
I would suggest that you read as much as you can on the subject, preferably from myeloma UK.
As for me, I was very nervous after the transplant specialist gave me the sequence of events and all the things that ‘could’ happen to the body after the transplant.
The harvest was easy, it took two sessions to collect enough cells, very boring just laying there watching daytime TV.
I had a Hickman Line into my chest which was a bit unpleasant.
The actual big dose of chemo and the transplant were painless, all done through the Hickman line.
I was in isolation for three weeks, and was in semi isolation at home for about a month. Then slowly got back to a normal routine.
All of the things that could have happened to me didn’t happen, maybe I was lucky!
Now twenty months later I am not on any drugs, I have a clinic visit every three months and have a penidronate infusion at three monthly intervals. We still travel in UK and abroad.
I travel with my trusty thermometer and antibiotics, just in case!
You could say I had an easy time, some may tell you of their difficulties, but all I can say is that it is all very terrifying but all very doable.
I wish you the very best on your journey, let the experts guide you along it, you’ll look back and wonder what all the concern was all about!
Go for it.
Regards
Tony F
Many thanks for the replies. If anyone else has any other advise, I would be glad to read it. Thank you.
Bernard
As Tony wrote, read up all you can on bone marrow (stem cell) transplants, talk to Myeloma UK and check with the Myeloma Support Group in your area. As you may know, being put on a path towards SCT is part of the NICE-recommended regime — and NICE dictate the financial side of things as regards Myeloma treatment. My 6 cycles with Velcade/Dex ended last month with my paraprotein count undetectable but with my lambda light chain count increasing after cycle 4. Had a long talk with the chief SCT consultant in my area who did not pressure me to consent to SCT. He did advise – as a useful halfway step – to have my stem cells collected and frozen until such time as I agree to SCT or it’s the only course of action left. I have in fact just had my stem cells collected and fortunately it went well. The reaction to SCT will vary with everyone depending on such factors as age and other physical problems. Ask your consultant about mortality rates for your age and what is the expected extra remission time you should get. Then subtract 6 months from that because you’ll be recovering from the op. If you have other medical conditions, check for medical interaction problems with your drugs and melphalan (the usual high-dose chemo drug in the SCT procedure). Many personal factors also come into play e.g. do you live alone, do you or your partner have to look after elderly parents, can your partner severely cut back on his/her activities including work to look after you, do you have good district nurse support in your area etc. Hope this helps.
David
Many tanks David. I think SCT is the way to go. I’m only 48 so a bit peed off I have MM at my age and when otherwise I was in good health and very active. So anything that will extend my remission and life and allow me to see my kids grow into adults is going to be the way forward. Plus I’m getting fed up of chemo now and the fatigue so some normal time is needed.
Hi Bernard, I was 51 at SCT and I really think you will sail through it and your recovery will be quick and easy – don’t underestimate a “youthful/fit” body in the SCT equation – expect you’ll be out in 16 days. I was told afterwards 3 weeks is quoted so people don’t get disheartened etc and was told 18 days is the average. I don’t think there is too much hand holding required when home I was quite poorly after = following infection affecting the chest and a severe dose of S&D – but didn’t need nurse maiding all day – if your wife goes to work breakfast before work etc you’ll be up and about enough to sort yourself out with a sandwich during the day. There was a young guy on here called John who went back to work after I think 5 weeks, due to necessity, he lived alone and went through it more or less alone I think and I remember he said SCE was a “state of mind” and I do believe he was right – it is major, yes, but you’ve already been through major chemo treatment and I guess you’ve considered that to be “normal”. I am sure you have read lots of posts on the SCT experience and it’s not nice the nausea, the S&D, but it’s for a limited time – think your fine for first 3 days your generally over it when you are discharged 16-3 =13 days of unpleasantness – when you break it down doesn’t seem so bad after all. it’s all doable, treat it as a prison sentence at the end of the day mark it off a count down calendar – even if it’s been a really crappy day you will feel so much better knowing you have 1 day less to endure. It’s scary coming home, flying solo, and being scared of germs, germy people, door handles, money…your own shadow! but when nothing happens you do relax but still maintain a heightened hygiene routine that doesn’t really leave you (altho having said that I’m mucking out horses now and had mine last xmas). I thnk the big issue is what time of the year you have it done – I was in at xmas so the winter months were fraught with everyone having normal coughs colds etc which I viewed as really scary/serious and I could have but did not return to work after 3 months because of all the stuff going round. Wish I’d had it done in spring and sat in the garden recovering germ free but then having said that I was at full fitness to enjoy the sunshine months and going out rather than recovering. Good luck,
Rebecca
Thank you Rebecca. Your response was so positive it lifted me. I especially liked the reference to the horses which shows me you must have strength and energy back which I can only dream of! I wrote my last response in hospital where I had yet another infection so was being negative. Another weekend and another side effect this week with DVT but hey ho, life goes on and if you can muck out horses then I can get back to playing golf after phase 2! Thank you.
Never rains but it pours. DVT in both legs now which is affecting DVT treatment and will impact bone marrow treatment. Hey ho.
The topic ‘Bone marrow transplant’ is closed to new replies.
