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• 18th October 2011 at 11:56 pm #98395
  
  cw1985
  

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  Hey everyone!

  Ive taken a bit of a hiatus from here but I'm back with some updates on daddy and questions questions questions! With mum and I both working full time again we havnt had much time to visit here but we're here again!

  So Daddy is 5 months on from diagnosis… it really has been an eventful 5 months but also very very draining.. physically and mentally for all of us. Dad just finished cycle 6 of velcade last friday and his consultant is pushing for 7 &8 so hopefully by the end of Nov he will be finished with Velcade! his last numbers were excellent ( they are very funny about telling you them but we push and push!)

  Up to cycle 5 daddy was coping really well with Velcade, didnt have any side effects at all but now cycle 5 & 6 have really taken it out of him, weve noticed a pattern…. about 4 days after a cycle finishes daddy gets REALLY bad headaches, becomes sooooo exahusted, anxious, weak and cant eat… and also cant sleep * even with the sleeping tablets*. Has anyone else noticed this drastic change in side effects in the later cycles? the consultant did say : you might feel a bit tired".. but this tiredness is in another league! We also had about 3 weeks were daddy couldnt face food at all and he lost almost 20Kg… which was really scary thankfully he has started to eat a bit again and luckily had some "backup" from the steroids!.

  We did get some great days ( but i think these were linked to "superman steroid days" were daddy was able to get out of the house – he still isnt walking unaided and uses a wheelchair, which he is finding really frustrating!

  i want to know… people who have finished velcade.. how long after u finished did u start to feel "normal" again * if thats the right term to use?*, or how long after V did u start to feel stronger again? and are the crazy SUPER tired, weak, anxious side effects normal at this stage? I know its a very individual thing but maybe someone has had a similar experience?

  Its scary to think 5 months have passed already and the amount of things that daddy has faced in those 5 months is just mind blowing. Next stage is SCT.. the consultant is pushing to do it straight after velcade but that would mean being in hospital over christmas which non of us want so we are negotiating a month break to give daddy some breathing space and a sense of normality again and hopefully give him an indication of what kind of mobility he has been left with.

  Long post is long so i wont go on! I want to say thanks for all your amazing kind words in my first post in newcomers they have been a real support and as always i tell daddy all your stories and words of encouragement… he talks about joining every now and again so maybe someday he will!

  Christin xx

  19th October 2011 at 8:46 am #98396
  
  brocho
  

  Participant

  Hi Christine its good to hear from you and great to hear Velcade is doing a good job getting your dads pps down . I remember being very frustrated when on Velcade because I felt so awful for the first part of my week off and others have said the same As its worked so well has anyone suggested a lowerd dose? It might be possible to lower the dose without it being less effective , perhaps you could ring your dads nurse for a chat I do remember feeling so exhausted and tearful near the end of my first lot of treatment so try not to worry too much it is fairly common. If I remember right it doesnt take too long once you stop Velcade before you feel better . I know it must seem this part of your dads treatment is lasting for ever but he will soon be over the worst and he can then start to build his strength up Have they said what the next plan for treatment is? Hopefully they will give him a break before starting anything else. Hang in there Christine life will get better for all of you it just takes time to adjust and your dads weaker not only from the drugs but also the myeloma too It might take some time before your dads mobility improves the most important thing is for him to listen to his body and not overdo it , resting when he needs to even though it is frustrating .
  Once dad finishes on Velcade you will find his appetite will improve too , have a chat with the nurse about ways to help him eat too Because the steroids mess up your taste it can be hard to enjoy food so dad is best having whatever he fancies , even if it is curry for breakfast!!Small portions are better and frequent snacks rather than a big meal are good too As I said keep going Christine the worst is almost over and once your dad has an sct hopefully he will get a really long remisssion where he wont need any treatment for a long time Please say hi to your mum and dad love Bridget x

  23rd October 2011 at 3:49 am #98397
  
  eve
  

  Participant

  Hi Christine
  Cannot help you much on this one,except to say,Velcade did create a feeling of anxiety and general accident prone moments,not sure if it was Velcade,but put it down to doing to much and not drinking enough fluids.

  Your dad must be feeling pretty bored not being able to do much,and being so young and active,surprised you cannot get him on here,might help with his general well being,make him realise there is light at the end of the tunnel.
  |Best wishers Eve

  24th October 2011 at 10:54 pm #98398
  
  mhnevill
  

  Participant

  Hi Chrisitne

  You all do right to get SCT put off till after Christmas. Last year they wanted to start my radiotherepy days before Christmas and I held out without any noticable effects. I think Consultnants sometimes forget how important these family times are and this will be especially good for your father if he is feeling better then after the Velcade.

  All very best wishes.

  Mavis

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