I had VCD treatment last year I had levels in light chain of 4000 which apparently is quite high with a kidney function of only 6%. I have dialysis 3 times a week. I was before this year a very fit and healthy woman and was enjoying my life. After the VCD which I didn’t find difficult at all I had reduced my level to 2000. Not as low as the doctor had hoped but this was possibly due to the fact that dialysis was reducing the impact of the treatment . I am now on a higher dose of VCD and taking thalidomide too. This is to increase the strength to try to impact the cancer cells to die. Don’t be scared of the treatment its not as bad as you think. Its the unknown that is terrifying but it all does work even if it may be a bit slow at first. good luck with your treatment I pretty confident that you will sail through it like I did. Good luck. God bless. Amanda.
I too have kidney failure with myeloma . In fact that is how my myeloma was picked up. I became very ill , with almost like a very bad flu like symptoms. When I could hardly get out of bed I was diagnosed with having acute kidney failure and was rushed into hospital. My function was 8% and after a biopsy was found to have myeloma being the cause. I had a hickman put in my neck to be able to have dialysis . My point of replying to you is that I have been bombarded by the doctor to have a fistula too. So far I have resisted as I find that the lines in my neck are painless and less hassell than the other patients on the ward who have fistulas. After reading that you have had complications I am going to continue to keep my lines as to be honest I don’t think I need anything else to complicate my condition or the way I feel. So thank you for the very good advice of resisting sometimes what the doctors think is the best option. Good luck for the future. Amanda.
Hi Rebecca
Thank you for your reply. I noticed that you too have kidney failure, my gfr is 6% so I am just hanging on. I was very pleased to learn that your SCT didn’t impact on you negatively. How are you feeling now and did you find the SCT an aggressive procedure ?. I don’t suppose I will be lucky enough to save my kidneys as they are very low in function and the SCT may finish them off. I am not really so worried about the kidney side , but more on how things are going to be during and after the SCT. I have heard of so many people not feeling well for years after , and some the SCT hasn’t even put them in remission for much longer than 6 months. Its all very daunting when your in the unknown and everyone is so different. Myeloma is a very complicated illness and effects everyone in so many different ways its mind boggling . I notice that you had your SCT in 2013 how have you been in that year ?. Have you felt well and has the SCT made any progress in slowing your myeloma or are you in remission. I would love to hear how it has been for you whilst you had treatment and after. Please try to get back to me I would like to hear your story. Every little account helps to build a picture as to what the future may bring. God Bless You and guide you through to the light. regards Amanda.
p.s. made a mistake it should read that I am now under the Kings in London and note it should not read I not with the Kings.
Hi Maureen. Was very interested with your comments of your disappointment with your consultant. I too have had I feel a bad response from mine. I went to mine and he actually put in his head in his hands and said that the with the results he had in front of him , he just didn’t know what to do next. He would have to have a discussion with his peers and get back to me. This was a very worrying moment and didn’t inspire me with any confidence. It took 3 months with another blood test and bone marrow test to be done in between. The three months seemed like forever. In the meantime I spoke with a myeloma nurse on the phone who told me to get a second opinion. She gave me some doctors and numbers as referrals and I then got these referrals from my own GP with a letter. The Royal Marsden was my option for a second opinion. He was shocked at my results and the decisions that been made in my care. He then explained what should have happened and what should happen from then. He wrote to my consultant. When I had my last consultation with my consultant , he was a very different man . He picked up on the fact that I had had a second opinion and acted upon this letter and suggestions. I am not under the kings in London now , all due to this second opinion and heading towards a SCT. Just started a course of strong velcade with thalidomide etc. the will have a harvest , then a strong chemo to kill of as much bad cells as possible. I will at this point, I have been told, to expect to be very ill. I see that your husband is about to under take the same procedure. I hope that he will get through it and sail towards a good remission . I wish him all the luck in the world and that you keep me posted how it all goes, as I am not going too far behind him. Does he have other symptoms . I have kidney failure, but I feel very normal which is a little odd to say , I am hoping that such an aggressive procedure isn’t going to bring on other problems and be a downward slide to complications that so far I have escaped. Take care , I am thinking of you , the lord is holding your hand just keep believing . Amanda Hart.
Yes Richard , we did think that too. Quite a big difference that little 0 that means nothing to some but much to me.
Hi Everyone
Just a little puzzler perhaps someone out there has experienced the same. I have had a count of 2000 in the light chain serum test, that has been the same for a few months now. This test was done at Canterbury. On a visit to Kings Hospital I had to have a blood test to get my latest reading of light chain serum and it came back at 180. My consultant at Canterbury didn’t believe that could be possible . Had another one done this has come back at 2000 yet again . Now Kings have asked for another to be done as they don’t believe this result either. How can two hospitals be so different , as now my chemo has been stopped whilst they find out but my consultant wants the chemo to continue. Has anyone had a huge difference and what was the outcome. good luck everyone .
I read your comments with interest. I have light chain readings of 4000 to 2000 . on velcade with dex. This result wasn’t enough to put me into remission with a lower reading. I needed to be at around 25 to 100. I am just about to start another course of velcade with thalidomide to try to get the reading down. I am disappointed to hear your response on this. I had my trepidations about this course, and like you feel that it is going backwards. I am supposed to be having a STT when the level is lower. I wish you well with your next course and hope you go down as quick. I find all the waiting such a delay in the treatment is quite frustrating. Good luck.
Hy Cygnet
I have just noticed your comment on looking for a specialist.
I am in KENT AND CANTERBURY . I have been under them since last March. Things have been quite slow in progress. I asked for a referral to the Royal Marsden by my GP and Kings in London. I have had both referrals now. The Marsden was spot on and really have got a slick operation running. They know exactly what to do and will kick straight into getting everything moving. I visited the Kings last Friday. They delivered the same attitude as the Marsden. They are also a teaching hospital and have much to offer in the way of other treatments. They were ready to move things on very quickly too and gave me further hope as I have kidney failure due to the myeloma and could take care of that side as well as the Cancer , which was more of a benefit to me. Both hospitals were second to none and I was impressed with both . You would be in perfect hands with either of these two hospitals. Hope this helps. Good luck.
Thank you Dorothy. That was a kind thought you put out to everyone, you keep well too and hope that you are getting plenty of support. Amanda.
Hi Jan
Thank you for your account . Everything has become so much easier now that I can see the unknown . It was quite daunting talking with the consultant as everything seemed so drastic, but I now can see that it possibly could be so very different to what could happen. I am pleased to learn that you are in remission and so far with the accounts I have received everyone has been turned around and leading a good positive life. That has really enlightened my heart and I am ready for the next stage. good luck to you in the future, good health for years , god bless.
regards
Amanda
Good morning Keith
Thank you very much for your account and story. It made me laugh in a few places as I could imagine myself being high as a kite as I only have to have a sniff at a glass of wine and I am rolling about . Having said that so far everything I have heard from people so far has been very different from the consultant telling the experiences I may get. I am enlightened that the procedure will be hard but certainly not as severe as I have been warned it will be. I do sound if I am wimp but actually I have been very strong and positive since finding out I had Myeloma last February. I was rushed to hospital very ill to find on admission that I had Kidney Failure. On investigating why, with a kidney biopsy, the myeloma was discovered as the cause. So a big shock all round but I didn’t break down , and have soldiered on through . So the Stem Cell after a course of velcade for the second time starting next week will be the next event. I just needed to know what it was all about and if there were good results from this procedure. As I know nobody who has Myeloma , or in fact when I was diagnosed I had never even heard of it either in which case has made it very hard to get to grips with what is going to happen. I have turned the corner of the page of the unknown and with your story and from Tony I really do feel ready for the battle ahead , and kind of looking forward to the prospect of being clear for a while from this awful condition. Thank you so much, it really has meant a lot to put my mind back to the path of onwards and upwards.
Good luck to you in the future and I hope you remain in remission for many many years.
Good luck,
regards
Amanda.
Hi Tony
Thank you for your account . I will remain positive , I have up till now , especially for the family as I don’t want any of them upset. Today I had a wobbly moment but your story has put me back on the map .
It was great to hear that you are still having a good life and enjoying yourself , and feeling well with it. Wow well done. Good luck in the future.
Onwards and Upwards, thank you once again. I feel like a weight has been lifted.
take care,
regards
Amanda.
Hi Tony
Thank you so much for taking the time to tell me how it was for you. I feel reassured that I am doing the right thing , as you quite rightly pointed out the doctors tell you all the possible effects and it starts to sound unbelievably scary and almost unreal. I am really pleased to hear that you have been there and done it and sounds as if it has been beneificial. Have you got good results since the transplant . I am pleased that there is life after , was beginning to think it was the beginning of the end. I think that does sound over dramatic , especially from me, as I have been so positive about everything and not been phased at all , but the last consultation I had regarding the Stem Cell scared the pants of me. thank you once again, and god bless you . Amanda.
