• amanda replied to the topic The Under 50s Group in the forum Under 50s 6 years, 11 months ago

    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 hav…[Read more]

  • 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 rec…[Read more]

  • 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 af…[Read more]

  • amanda replied to the topic dental care in the forum General 7 years ago

    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 tho…[Read more]

  • amanda replied to the topic VELCADE AND THALIDOMIDE in the forum General 7 years, 2 months ago

    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 tha…[Read more]

  • amanda replied to the topic The Under 50s Group in the forum Under 50s 7 years, 2 months ago

    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 ap…[Read more]

  • amanda replied to the topic The Under 50s Group in the forum Under 50s 7 years, 2 months ago

    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 som…[Read more]

  • amanda replied to the topic The Under 50s Group in the forum Under 50s 7 years, 2 months ago

    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

  • amanda replied to the topic The Under 50s Group in the forum Under 50s 7 years, 2 months ago

    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 po…[Read more]

  • 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 ar…[Read more]

  • amanda replied to the topic Paraprotein in the forum Treatment 7 years, 3 months ago

    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.

  • amanda replied to the topic Paraprotein in the forum Treatment 7 years, 3 months ago

    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 re…[Read more]

  • amanda replied to the topic AL Amyloidosis carer in the forum Carers 7 years, 3 months ago

    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 do…[Read more]

  • 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…[Read more]

  • 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 ver…[Read more]

  • 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…[Read more]

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