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hi had sct in march been home bout 9 weeks due to see consultant next wed.
just wondering how many people suffer with aching joints etc
recently my shoulder and my legs (more specifically knee joints 0 are very painful, they ache all the time i have trouble sleeping because of restless legs and every mornig i wake up in agony feeling like i’ve run a marathon.
been on codydramol for over a year feel i need something stronger
anyone else the same/ if so how do you cope??
Hi – Don’t know if this is the same as I have no bone involvement (I believe) but after SCt if I had a little walk my legs felt as tho I had walked 20 miles and this carried on for 3 – 4 months diminishing in time. Any little exercise on any part of my body gave the same OTT reaction – shoulders, arms. My feet really hurt when I walked on them 1st thing in the morning and this is the only thing that is still the case but the pain has diminished to just feeling achy/uncomfortable and then they are Ok after a while. The body takes a massive hit and guess it takes a long time to recuperate. I went to the dentist 15 months after SCt and was told my gums were still swollen which he attributed to the chemo. I think Jan once said her dentist said it took her 3 years for her gums to recover to normal!
Rebecca
Hello,
Thats strange because I also had SCT in March and although I already had lots of bone damage therefore have painful legs & back. I have noticed that my shoulder is really painful, and my lower legs painful when I first get out of bed in the morning. The other strange thing that happens is when I have a wee my lower legs feel like they are being prickled with tiny pins ?. Not sure if anyone else has experienced that post SCT . Iam due to see the Consultant the end of June so i try to remember to mention it because I don’t understand.
CT
wonder if anyone can help me . I was diagnosed last March with multiple myeloma. I was diagnosed due to kidney failure . I am now on dialysis three times a week. I have been on a course of velcade, dex, and thalidomide twice a week and steroids for almost 6 months now. The level has come down now to 200 so far hoping that it is a bit lower after the next blood test. I am waiting to have a Stem Cell Transplant. My problems is that although I have Myeloma and Kidney failure I feel well and still do the things I was doing before I was diagnosed. I still work, and apart from a few minor hiccups nothing dramatically has altered so far. I am in two minds whether I will benefit from the Stem Cell Transplant . I was hoping that I would have a remission from the SCT but I am worrying that it will bring along many new problems which I havnt got at the moment. I am so undecided as to what I should do. Has anyone been in the same position as me and can offer some help waying up the pros and cons. take everyone, Amanda.
Hi Amanda, glad to her you are doing OK – I remember talking to you when diagnosed as we were very similar stories but my kidneys are now at 33 (just 18 months post SCT). I was hell bent on SCt regardless of risks but you do right to question it all with such a low kidney function. It took me 3 months to feel back to normal and get some fitness back so recovery was Ok. I had minimal residual disease of .3% before it and the process didn’t budge it. My light chains were in normal range before it, I think, and normal range after it – has it prolonged remission for me? who knows as I don’t know what it would have been without it. Whilst I have felt well and fit after it my bloods have only just started looking ok – so took way longer than they should have to look anywhere near normal – due to reduced kidneys? don’t know? Did the SCt really work or did I go through it for little gain? don’t know. But I did it more for my sanity as I could not have been plagued with the “what ifs” if I hadn’t had it. It was proposed to me by 1 hospital as I have high risk cytogenics 14:16 translocation – known to really impact the kidneys rather than the bones – I only had 1100 light chains and went in at 5% – think typically kidneys are not damaged until they get to an average of 7000! Factors for you to consider are:-
* What are your cytogenics?
* What mortality do they quote you with such a low kidney function – as an infection following SCT could surely wipe them out now? I was quoted 20% with my kidney function (then at 26) a 1 in 5 chance! but the consultant thought without it I may quickly become a statistic as more treatments/sooner impacted on my kidneys. They thought it was worth the risk – BUT it is our risk and not theres remember.
* What remission is typically average on your chemo treatment? mine was only velcade and dex not known for a long remission – think 6 – 9 months is an average quoted so SCT was needed to lengthen it and let me tell you 18 months totally drug free and normal QOL is fabulous.
* So far has your MM been difficult to treat and have you used up some treatments already and still not down to normal levels? I ask this as you must have had more before you current ones in the length of time you’ve had it? Therefore is it aggressive? and do you need to throw the kitchen sink at it to normalise? or are you facing the prospect of continuous treatment/maintenance if it doesn’t normalise?
Don’t envy your decision and would really question the consultants rationale for proposing it. Good luck with whatever you decide – all I would advise is put any “fear” to one side and do a pro/cons sheet and look at it as though it is a business proposal – as they say “life shrinks or expands in proportion to ones courage” – but lets not be kamikaze about it! I would also post the question on the Myeloma Beacon site as this a real wealth of information.
Rebecca
~Thank you Rebecca for your reply.
I had a course of velcade and dex. for 5 months which bought me down from 4000 to 2000. which of course wasn’t enough. I am now on velcade, dex and thalidomide which has bought me down from 2000 to 263 so far with another month to go. So far I have been battling with bringing the levels down. SCT was recommended after this course finishes which they hope to have bought the levels down to around 100. So to answer your question I have so far not managed a remission yet , I am supposing that this could be aggressive but nobody has told me that so far , but it has been very stubborn to shift. Apart from that I do feel well and life is relatively normal. Did your kidney function improve after the SCT?. I think that is my worry that my kidney function is so low in the first instance . I have impressed my views and although they say there is a higher risk of problems because of this , it is still possibly the best thing for me. I do seem to be questioning everything as I feel that I have become a guinea pig into seeing how things progressive with such a low kidney level. Perhaps that sounds a little dramatic to you but they seem very keen to get me in and have this done as they havnt done anyone apart from one lady with kidney problems . She was on 20% at the time of SCT. Mortality rate is a higher risk . I really don’t know what to think or do. Your reply has been of much interest to me and I will have to get a list of pros and cons made up and see what the result is. Thank you , if you think of anything else let me know . I have a consultant this Friday in view of the SCT so every little information to ask is valuable to me. Good luck to you hope you are in remission . Amanda.
Hi Rebecca
Forgot to mention that my kidney function is only 6% . That is my main concern that I am already very low. I will possibly loose my kidneys totally because of the SCT . I have got to way up if it is going to be worth it . Remission or kidneys I suppose. take care Amanda.
Well my MM no.s reflect greatly on kidney function – if my light chains moved from 60 6o 40 I would get a bit more kidney function back – but it could only go so far. I averaged 26 pre harvest the harvest knocked MM back a tad and I went to 28. SCt took them to 30 with light chains in normal range and they are now averaging 32. I would imagine you would find an increase in function if you get to normal range as when my light chains were about 120 I was at 16%. I put this down to the 14:16 translocation known to impact badly on kidneys for some reason. What are your cytogenics? What mortality are they quoting at 6%? is the same one I got? There are people who have had it done whilst on dialysis and at Leeds I was told one person came off dialysis after the SCt. I did used to chat to a man with kidney issues and he knew someone who was on dialysis and his kidneys gradually improved to a point where he came off it – but it took 3 years after SCT. He told me that kidneys can improve in time (despite medical opinion!) and he gave me some diet tips to aid kidneys and his renal charts which showed a significant improvement over time which he accredited to his diet and supplememts. I’m afraid I’ve just decided to go back to normal life and a normal diet rather than a kidney friendly one as my haematologists tells me I don’t need to be on a special diet. I am not convinced but never see a kidney specialist to confirm. SCt may bring your MM down and raise your kidney function or it may not – we never know until the deed is done. I was so well before SCT my husband didn’t want me to take the 1 in 5 chance – it’s hard to gamble everything when it’s not a sure certainty. If I was you I would pay private and quickly go to another hospital/region and ask for a 2nd opinion – this is the ultimate thing you are gambling with. Professor Gordon Cook at Leeds was my 2nd opinion and I had my Sct there – he gave good explanations as to why it was worth the gamble but I’m afraid I can’t recall how he told it (blocked it all out now I think).He is quite well known/revered in myelomaland, I believe. Whatever you decide I believe you must be totally convinced it is the right thing for you – I can’t imagine going through SCt without that dogged belief that it will be worth it in the end. If I didn’t have that I wouldn’t do it. I used to say I’d have another one without a second thought but I think I would listen to my gut, like last time, and go with that – hardly scientific but often your gut instinct (if not borne out of fear) is the right choice to do. Good luck,
Rebecca
In reply to robbojnn, rebeccarollinson & Chris Taylor,
Great (or not so great!) to read your comments, I had my sct in March also and for the last 4 weeks have been suffering pains similar to your own. They are worse in bed through the night affecting my knees and shoulders (sometimes finger joints too). The pains ease off once I get up and only hurt again in my shoulders if I stretch them; drying myself after a shower, leaning over to grab the seat belt etc. If I sit or walk about I am not really bothered. The pins and needles sensation whilst having the first “wee” of the day is also one of my feelings. It does not return during the day at all. Your comments are enlightening, as it is good to know I am not the only one and it seems to be part of the process for some of us. Has anyone had this resolved? Doctor’s are advising increasing painkillers as an experiment.
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