Hi Beverley
I had VCD but am now on VDT (thalidomide) I had neuropathy in hands and feet so velcade was reduced. It is now under control. So hopefully you will be ready as I almost am for the SCT which to be fair is quite a scary procedure but I am sure that staying positive and upbeat is half the battle to winning. Good luck. I should be having my SCT in August after the usual harvesting and bone marrow ,( which I find the worst thing to have ) then head down and go for it. Let me know how you are doing and I will try to give you an update to how it all goes. take care,
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.
~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.
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.
Has anyone in the forum read about the new drug DTP3 which is to help Myeloma patients. Would be interest to hear your verdicts on the findings of this amazing news. Amanda.
to jan Jordon
I noticed an email in my inbox but cant find your reply on the forum. Thank you for your reply. my side effects of trembling and shaking have calmed down and seem a little better although still there they are now bearable. I don’t have tingling in my hands and feet either so I feel pretty lucky. I am still like an old woman though which has hit me hard being that I was very active. I seem to do a little housework then have to sit or lie down and its very much an effort as every thing aches and legs are heavy . Muscles seem weak. Any way I am on the last cycle now of this regime and I hoping that its bought the level down enough to go ahead with the Stem Transplant.. To be honest I am not really looking forward to that prospect but it seems the only option, to try to get this creature out of control, that has completely taken me over. I have kidney failure , down to 6% so its not going to be plain sailing but I am up for it and going to give it my best shot, like I have been doing from day one. Hope that you are getting on ok with your treatment not quite sure what you have had and done up till now , please keep in touch. I don’t look here every day so I lost contact but I will do my best to keep up . Sometimes I just have to give in and go to bed early. As I am at the hospital 4 – 5 days a week and they are long days too, so it does get very tiring fitting in work and all the usual every day things. Good luck, hope you notice this bye for now, Amanda.
Carol and Janet. thank you for your replies all information helps. I have started to feel like an old woman to that is the best way to describe it seeing as I am a very active fit woman of 56 , I actually feeling like 76 at the moment. My muscles are weak , I am trembling and shaking, have dizziness and constipation. This is all due to the thalidomide as I was perfect on just the velcade last year. I don’t suppose they decided to take you off it if your side effects were bad. Seems like we have to take what the poor body is trying to put up with. good luck to you both . Amanda.
Hi Matt
Thank you for the idea about the book I will get that. I am finding the delays between treatments and waiting for results takes so long. The hospitals have lost two blood tests which upon I am waiting for results back since Christmas. After the courses of treatment have finished there doesn’t seem to be any urgency in having an appointment or blood test before hand. Have you experienced this laid back approach or is just my hospital. Good luck with your treatment hope you have a long remission. take care, Amanda.
H I Matt
Thank you so much for your reply , it has really helped to put things in to prospective. I am fully aware that there are going to be problems along the way and I know that I am ready to handle it all , but it is a great help to know roughly what is in store. I hope that Beverley has been able to read your reply too and has got some comfort from it too. The unknown is the worst thing to handle . I wish you lots of luck for your future and hope that your gain a good remission. This disease is very hard to get your head round as it is so difficult and different for everyone. regards Amanda.
Hi Matt , would like to thank you for your information on the SCT it was very informative, sounds like you found it ok . You put it just as it is so I feel quite relaxed about it. Did you loose your hair etc on the last chemo ? and were you very sick ? Good luck to you in the future. regards Amanda
Hi Beverly , I have just started CDT working towards having SCT in around end of April. I don’t know what the procedure is if you start harvesting cells and stay in hospital or if you do some kind of injection for yourself at home. I know that the blood count starts coming down to take us in to anemia which at that point you feel very poorly. I am hoping that when it gets that point that have me in to do the SCT. after which I believe that you stay in quarantine until immunity is back up and well enough to go home. This is just my impression of what is to happen but I am not totally sure. Hope that somebody can answer yours and my question as to when you go into hospital and what happens. good luck to you when you have your SCT. Regards, Amanda
I have whistling in my ears too, hadn’t realised that the velcade may be responsible , I have not worked or used anything loud over the years so may be it is a side effect. I will ask when I am next at a consultation. Worth investigating. Thanks for that info Christine.
I am so stunned to hear your news of your parents. You must be beside yourself. There is so much about this disease that we don’t understand. I wish you well , it will take a long time to get over so my distraugh
diagnosed with MM in 2014 with kidney failure of 6% so it is all of great concern. Its not an easy disease to get your head around. God Bless You . I know I don’t know you but I really do wish you well for the future and send my sympathy at this very sad time. God Bless You , Amanda.
I would encourage boosting the level up to two injections a week. the steroids will go up with it and you may find that will help you with your energy problem. hope that this helps. Amanda.
I am on VCD too. I had the same course as you last year. I went down from 4000 in light chain to 2000 not paraprotein result as they have never given that to me . I was absolutely fine on it. Now I am having a course of 2 injections a week instead of one and taking thalidomide too. So far I am far. They had my blood results back one was really low and in vg p. remission the other was very high the week after . This is still be investigated 6 weeks down the line. They agree someone has made a mistake but don’t know which one is wrong. Done two more tests since and STILL waiting which is driving me mad. These errors may be small to them but they make a huge difference to your well being back home to box everything and carry on is the only thing I can do at the moment. The regime of 2 injections of VCD and thalidomide is no problem , so don’t be worried its is fine. Hope this has helped, bye for now, love Mandy x.
