Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My treatment started straight away when they diagnosed me, as I was in hospital. I had been ill for quit a while and they did not know what was wrong with me. The doctor told me that he thought I had cancer, I had a bone marrow sample it confird it as myaloama. I was really in shock, they had been telling I had a virus! Had my first chemo 2 days later. Just an injection and a tablet bombarded with loads of leaflets and books to read. I was very confused by it all. Blood test every day. The canser effected my kidney. I have 4/5 kidney failure and was going to be put on diyallasis. But no transport to tack me to Dorchester, but by next day my levels had gone up so did not need to go. Had the usual side effects, couldn't taste anything, sickness so lost a good bit of weight. It was just all the paper work that started to poor in I also have liver cirrhosis which was a side effect from the anxiety and depression medicine. So since last summer I have been in remishion. Thing have claimed down. Just a bit worried about when it comes back.
Ok well thats great new that’s you are clear at the moment then, have you not had to go through the stem cell treatment.
ive got mine coming up up in September time. I must admit I am feeling the same as you, the worry about it returning scares me.
I have severe pain walking caused by the bone damage and tumour in my hip. Even the radiotherapy has not given me much relief from it.
I think with this is can cause depression with anxiety. I’m in two minds what to do with work. Some say to go for the medical retirement but it’s a toss up as there can be spaces of relief that could be a few years may only a few months. Everyone is different that’s the trouble so we just do not know when it will return. My consultant calls is a life limiting illness which doesn’t sound good but something I understand and deal with.
its sounds like you are on the upside now, is it just the worries now about return now
I hope you don’t mind me butting in on this thread?
Just wanted to let you know I was 36 on diagnosis (40 now), and whilst you’re right that myeloma tends to be diagnosed at an older age, I just wanted you to know there are people around of a relatively younger age too.
Let me know if you have any questions around stem cell transplants. I ended up having two (an auto and an allo). They can be daunting so I’m happy to allay any fears as best I can.
You’re right on the individual nature of myeloma as well, which can make it very hard to predict. Just wanted to say you may want to leave a decision re: work until after you’ve recovered from the stem cell transplant. There was a period of time when I was definitely not fit for work, but it’s amazing how the body can bounce back. I’m over 3 years since transplant now, and work 4 days a week without any real hassle - I may be able to do full time but I don’t feel like I need or want to push it. So it may be that post-transplant you’ll find your strength comes back and you are happy to carry on working.
Anyway, hope this helps, and apologies again for butting in on your discussions with Connie.
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not at all, it’s good for everyone to have input, can I ask how long was you in the hospital for with Stem cell. I’m having the auto one. The nurse told me it’s a minimum of 3 weeks but goes up from there depending how your body takes it’s all.
were you on any medication afterwards on returning home .?
my consultant told me he would not, even if I felt like it, consider signing me back to work for at 3 to 4 months after to allow my time for levels to raise etc.
How often do they check you now.?
For my auto, I was admitted on Day -2 (that is two days before Day 0, which is the day your cells go back in). The reason they do that is because they give you some pre-medication to try and wipe your immune system as clean as possible before the cells go back in, and those pre-meds’ can be harsh so it’s best to be an in-patient. I was discharged on Day 12, so in total, it was just over two weeks for me. I think I was quite quick though as I didn’t pick up an infection - they say 90% of people pick up an infection during the process, which can roughly add on about a week, which is probably where the 3 weeks you have heard comes from. Ultimately, they’ll keep you in until your blood counts bounce back - mine started kicking in around day 9-10, and when you are infection free.
You’ll likely have a lot of fatigue and have to follow a special diet when you get home, and you may be given anti-viral and anti-fungal medications if they feel your new immune system needs the support. They say the first 100 days is the most important, which is what your team might be referring to about 3-4 months. I had my transplant in early October and returned to work in early Jan, so it was about 3 months for me.
I went on to have an allo transplant after the auto, so things get more complicated after that, but that might not be relevant to you. Effectively, for the past 3 years I have not taken any medication for myeloma. I still take penicillin daily but this is an after effect of the allo transplant as opposed to anything myeloma related. I get check-ups every 4 months, and this will be for life due to the nature of myeloma, but to all intents and purposes, I have been living a very normal life for the past couple of years.
Hope this helps
Joining in with the thread - I was diagnosed at 45 last year. I had an auto SCT in Jan/feb this year. I was in hospital for 15 days in total, which is about the same as a number of people I’ve chatted with, so it isn’t always 3+weeks minimum.
I went back to work in June - so 4 and a bit months after. But by then I was feeling pretty fit - I did the Macmillan south coast mighty hike (26miles) in a pretty good time in early June. I reckon training for that did me a world of good, getting me out of the house and doing a slightly longer walk each day. At the start it was all I could do to stumble around the garden for 5 minutes - but a little bit more and a little bit further each day, with a goal in sight, really helped.
I was checked out pretty regularly after the transplant (fortnightly, then monthly).
All the best of luck!
Thank you both for your answers, hopefully mine should go without too many issues. I’m just hoping that the bone damage in my hip will get a bit better as my mobility is very poor. I think that will be the glitch for work as I have to be mobile with my job.
it’s good to hear that most people have returned to their lives and jobs like normal afterwards. We cant worry about the what ifs, we know it may come back but I think if you worry about it constantly it’s not going to be good for your mental health.
Im not even sure whether they would even medically retire you off these days as although it’s classed as life restricting illness, there can be many many years I in between with nothing. All they look at it is could I work for next 20 years and possibly yes.
Hi have you thought about loventearing. You can pick and choose what you do and how many houres or days you want to work. I think it's ether the local cancouncil or the job center, you can asked for a booklet with whats on in your area. It's not workig in a charity shop! It will get you out and mating people. Hope you are well to day.
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