Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Been battling the dreaded Multiple Myeloma since feb this year (19) levels have reduced enough after chemo for Stem Cell. Just finished the harvesting 2 days ago at Barts so now got a nice 2 to 3 week rest until I go In for it.
I'm 44 but the myeloma has eaten my bones and left me with a tumour in my hip and pelvis which has gone but left a lot of bone damage and now I walk with a stick. My mobility is very poor even after radiotherapy. Not sure what they plan to do for me long term if anything on this. Chemo Nurse states I may never be pain free from it and may always have a limp
im still young and hope after stem cell to have a sort of normal life although my cancer is bound to return at some point.
Work has been good although they said that they will be probably look at retire me through I’ll health after I have been off a year which no doubt I will be throughout this. My consultant stated that even if I could walk and was fit he would not sign me back to work for at least 3 to 4 months after which would push me well past the year mark
Not even sure I could still do my job, I can’t walk. I’m in severe pain standing or sitting for any length of time.
Has anyone else on here been pensioned off through ill health with all this. ? It seem many people been lucky enough to get back their health and return to work.
it seem that there are many ongoing appointments that will follow on after this. All this and dealing with it mentally that it can return at any stage really eats away at you.
Hi Mark MarkyMark100 and a warm welcome over to this corner of the Community, I have been having a look at your discussions with Greg and I do hope that this has helped you along this MM and Stem Cell Transplant (SCT) rollercoaster road.
I went through two Allo SCT with cells from my big brother. I was not suitable to go through an Auto so he came back as a 10/10 match so result for me. He is a big lad and he also had lots of bad bone pains, but once the harvesting was done it all settled down.
So sorry to hear your long lasting issues and probable life long issues with regards to your bone breakdown……cancer can effect us in so many ways.
I was diagnosed with my rare skin Non Hodgkin’s Lymphoma in 1999 and did ok during the first 10 years, but as I worked in education the stress levels were developing over the years and this actually started to have a negative effect on my health.
I did apply for early retirement on medical grounds and my College Management agreed, but the application came back regected, saying I was not eligible as my condition (Cutaneous T Cell Lymphoma) was not covered in the Governments Teachers Pensions classification to get medical retirement……. I was not happy chap and no end of conversation, letters and medical assessments would move the goal posts.
I was 55 at the time so I took a small redundancy package and took my pension early and doing so lost some of the benefits….. but no regrets........ but little did I know that a few years later my condition became aggressive and the only way then for me to survive past a few years was an Allo SCT.
I am now going 64, my main treatment started late 2013 with my first Allo in June 2014 and my second in October 2015. The post SCT recovery was rather long but I was hit very hard during the second Allo……. But in September 2016 I was told I was in remission for the first time in 17 years.
It was all very hard work but no regrets. Yes, left with a lot of muscle and nerve damage in my neck, periods of fatigue and an immune system that is not able to fight some infections - but I am still around and doing good.
Can I also highlight our various Macmillan Support Line Services. This is a free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link - call them on 0808 808 00 00.
I would advise you to talk with them with regards to long term benefits that could well be available.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
If you go to the top of the forum you will see the ‘Discussions’ tab - this is where you can see the headings of some of the long running threads. This is a good thread looking what to expect during your actual time in the SCT Unit - Checklist for SCT Unit
Once you have been told the Conditioning Chemo they will use to take down your immune system, come back and tell us as I am sure that someone has had it.
We have had a few treated at Barts so lets see if they pick up on your post. Folks find us, we walk through treatment with them and a lot of folks then move on with life and that is great.
Any question, just list them and I am sure that someone will be able to give you an answer. I see that you have some info in your profile and as always you can hit our forum names to get a taste of our journeys.
Keep posting as it does help.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Me again! A great post from my friend Mike which I hope gives you a good introduction to this part of the forum. An SCT can be a unique procedure, but regardless of the blood cancer, the process tends to be similar, so I hope you’ll find a lot of support here in the next few weeks - please use this space to ask any questions you might have, I’m sure someone will have some valuable experience to share. You might even come across someone doing an SCT in a similar timescale to you, so hopefully someone will be along soon who is.
I’m sorry to read about your work situation - I’m not sure what your job is but your employer is required by law to make reasonable adjustments. My job is office-based so I did a lot of working from home, working when I was up to it, etc, they had to be flexible with me whilst I built my strength up. I ended up having over a year off, it was about 15 months in total. I know not every employer nor job is the same so apologies if it’s not possible for you, but it’s definitely worthwhile pushing to make sure they are following their legal responsibilities.
I’m really hoping now you’re in remission that you see some improvement in your bones. I have a collapsed vertebrae in my back due to myeloma and I still get niggles now and can’t pick up anything heavy, but it has improved over time, so I’m really hoping you find the same. My consultant said to me there were options like bone-cementing operations they could do to help in the long run - not sure if something like this would help, although to be honest, probably best to focus on the SCT in the short term and leave stuff like that for when you’ve recovered.
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