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Hi Izzie here – just had my stem cell collection a couple of weeks ago and I am now waiting for the phone call. Just wondered if you lovely people can share your experiences of this. The reason I ask is that I anticipated gaining some of my strength back – I still feel absolutely knackered! Have not been out ANYWHERE for weeks – as I have just not had the energy and am still suffering rather badly with neuropathy in my feet which makes walking difficult and painful. To be honest if I feel like I do now – I feel that it is something that I do-not feel up to mentally or physically. I was wondering if I could adopt a ‘wait and see’ approach and obviously would need to run this by the consultant. As anyone any thoughts or experiences of this – please let me know.
Many thanks
Izzie
Hi Izzie,
If you look at my thread – ‘Buddies wanted’ there is a lot of posts by me, Ang and Carol about what we went through from Stem cell harvest to post SCT. We all had different experiences so it should give you an idea what to expect. As for the Neuropathy, I had the same throughout the harcest in early December- very painful at night, poor sleep because of it, had to keep moving to get the blood circulating during the day etc. However, over Christmas it subsided dramatically. All I get now is just a sharp pain once in a while on my left instep and right big toe. It is a nuisance rather than life affecting side effect now.
I think it is also fair to say that Carol and I have had different results from the STC. Whilst Carol is effectively in full remission with normal light chains and no trace of paraproteins. The STC hardly touched mine. My Igg protein has dropped from 32 to 23 and has remaninned at that level for the last two blood tests, that’s over a 4 week period. So be aware it is not guaranteed but I believe it is still worth doing as it seems to work for a lot of people.
Hi Izzie, Sorry to hear about your predicament at the moment. I used to think SCT was a massive step but having had one in December and more or less back to normal now I wouldn’t hesitate to do it again altho’ I had about 6/7 horrible weeks with the process/side effects – but soon forgotten. I believe there are trials now where people have been harvested and will SCT on 1st relapse but it is the norm to go in early in the hope of a deeper, longer remission. I have very low kidney function and my designated hospital did not want to risk them with SCT and I sought a 2nd opinion and went elsewhere – because of the risks to me I asked about postponing til 1st relapse (as I felt so well at the time)but still they thought it best to SCT me then. I am not being told/having my results discussed until 100 days and I think my light chains have not moved – tho’ we will see as I could still be a “work in progress” – but I am glad I tried SCT and do not have any “what ifs” to torture my mind. You have come so far with the harvest that SCT is just the last hurdle. If you postpone it til relapse remember you will still feel awful pre SCT following the chemo cycles you’ll inevitably have. From a personal point of view one of the worst things of the process was losing my hair at harvesting and it takes so long to grow back to a normal length that I’m glad I had the SCT now so it can grow back and I can keep it (hopefully!) – would hate to have it grow back (ever soooo slowly) then lose it again in SCT process. If you don’t have it now will it hang over you? – knowing that you’ll have it in the future and will you worry that your remission may be shorter because you delayed SCT? Regardless of my final result I am glad I did it as it doesn’t enter my thoughts any more – I find myeloma is equally a mental torture instrument so anything to minimise this is a big plus in my eyes. Remember, you will turn the corner and not feel as tired etc it will just take time. I was harvested after velcade/dex regime so I had the primer cyclo-something for harvesting and I think that dose makes you quite neutroprenic (as well as bald) which you will be recovering from still.
I read your previous posts and note you are being treated, in part, at Doncaster – I originate from there and am there quite a lot (whilst on sick leave) if you ever want to hook up for a chat just sent me a private message.
Good luck with whatever you decide, Rebecca
Hi Rebecca – apologies for not replying earlier – but that is a measure of how ill I felt – couldn’t even be bothered to type – I am ashamed to say. Still feel no better really – nothing I can put my finger on – just general fatigue and some! When I try to explain it to people – they just don’t get it – don’t blame them!! I get your drift – it’s a case of just hang in there – but perhaps I am expecting too much. I have had a full blood count at my GPs and she has not been in touch – so I know everything must be fine.
I generally just ask for my paraprotein levels as that’s the only thing I really understand – is there anything else I should be asking ie I hear people talking about light chains but do-not understand their relevance. If you could advise me – that would be great. Thanks for your time in replying I really appreciate it and yes would love to meet up sometime in the future – oh! By the way after receiving your text – the next morning I woke up to a pillow full of hair – tried to convince myself I wasn’t bothered – but I think deep down I am – must be indenial!!
Regards and my very best wishes
Izzie
Hi Izzie, when you want to hook up just private message me – I met another lady recently who had gone thru SCt etc recently like me and it was really therapeutic because we talked non stop about things you can’t share with people who haven’t been through it – I don’t think anyone can even imagine it so I don’t bother talking about it to anyone – I also got lots of tips etc as she was a bit further on than me. Hair loss is massive to me – I lead my life trying not to acknowledge my condition – very much in denial – but every time I look in the mirror (without my wig) it acts as a horrible reminder – I too wasn’t bothered at first – bigger fish to fry – but now I’m over the SCT and feeling better I really want that bit over as well! Fat chance.
People, like me, who talk about light chains it’s because we have light chain myeloma – often there is very little paraprotein to measure with this type of myeloma and so the common measure tends to be the level of light chains. It sounds like you don’t have light chain – or Bence Jones myeloma- and so you can track your progress on the decreasing (hopefully) of paraproteins with a view to getting to zero or as near as damn it. People also generally want to know their haemoglobin level – obviously if it is low this can explain some fatigue etc as you may be slightly anaemic.
Trust me you will get over this blip and start to feel better
Rebecca
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