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• 15th October 2013 at 4:53 pm #103399
  
  Debs
  

  Participant

  Hi everyone.

  It's been a while since I've been on here, largely because two years post-transplant I am lucky to still be in a nearly full remission. It's meant I've been so busy with my kids, working in my new job fundraising 4 days a week, and playing netball that I barely get time to think! I hope that's a real positive for those of you who are coming up to a transplant or who are just having one!!!

  But I do have a question and you guys are the experts!

  I have been on revlimid as a maintenance therapy post transplant and will have been on it for 2 years in November.

  Has anyone else out there had any form of post-transplant check-up after the one year check? I've heard of a couple of people who without their PP's rising, have then found they had bone issues. After the 12 month bone marrow check, how often should I expect to have a BMB? How long do people tend to stay on zometa before it is too long? And how long do people having maintenance therapy tend to stay on this before the risks become too high for the benefits?

  So many questions!

  I probably shouldn't be worrying about these things, but it suddenly dawned on me today that perhaps I have been taking my situation for granted and I feel like if I ask my consultant (who is lovely mind you!) that I sound like I'm being really negative. Which I'm not being at all but I like to be prepared.

  Thanks in advance.
  Debs

  15th October 2013 at 6:48 pm #103400
  
  Helen
  

  Participant

  Dear Debs
  Congratulations on your 2nd anniversary.
  Re Revlimid maintenance… I have a copy of the protocol here and it says ' in the absence of toxicity, lenalidomide is continued until disease progression – I understand that means as long as possible and the drug company is legally obliged to pay for it. All those blood tests done every 2 months go to Birmingham for the trial monitoring.
  Progression is measured by ' clinical symptoms, FBC, paraprotein and free light chain assessment, urinary light chain, bone marrow assessments, and defined using the modified International Response Criteria'
  IRC are (briefly)
  Reappearance of serum or urinary pp
  Raised bmb cells by 5%
  New lytic lesions or plasmacytoma
  Hypercalcaemia
  –BMB is only done if relapse is suspected
  Zometa can be continued for longer than 2 years especially in those with considerable bone disease – the jury is still out as to how long but they are veering towards forever for that too if there are no complications.
  Does this help?
  Love Helen

  15th October 2013 at 9:15 pm #103401
  
  mhnevill
  

  Participant

  Hi Debs

  Congratulations from me too. Trouble is, haven't the two years gone quickly!

  I understand Zometa is for "as long as". I have been on it for over two years now and Consultant hopes to keep me on it.

  Keep well.

  Love Mavis x

  16th October 2013 at 7:07 pm #103402
  
  tom
  

  Participant

  Hi Debs

  Well you know i wish you well and a bloomin well done on your two years 😀
  as for me i do bloods every 6 months now 😎 gosh aint that Cool.
  As for the Zometa I was taken off it after two years (and i was happy with that) but some are on it longer ??

  Keep well and keep strong

  Love Tom Onwards and Upwards xx

  16th October 2013 at 9:02 pm #103403
  
  Debs
  

  Participant

  Thanks guys

  It's so hard to know. Helen, I know they might keep it on me forever, but my hubby is concerned (he used to work with osteoporosis drugs so knows a bit about bone regeneration) about the fact that my stopping it from doing its job properly, it could cause longer term issues for those of us who may live with myeloma for many years (please god!). So I worry that perhaps I shouldn't let them keep me on it for too long – Tom what was your consultants reasoning?

  Mavis, yes the two years have flown by…it seems an eternity ago in many ways! I am so grateful for having that time though. And hope for many many more years.

  Thanks for your answers
  Debs

  19th October 2013 at 8:51 pm #103404
  
  Vicki
  

  Participant

  Hey all

  I can't help with any of the questions but just wanted to say thanks for the inspiration debs and hi Helen hope you are doing ok.

  We live an existing life here….me on the forum and Colin is looking at the instructions on how to use and electric planer as he's planning g to shave off some doors tomorrow! Who needs a jet set life style!. Loving every minute of normal 🙂 🙂

  Stay well all

  Vicki and mr DIY!

  20th October 2013 at 9:23 am #103405
  
  tom
  

  Participant

  Hi Deb

  Sorry am late in the reply (hangs head in shame)

  My Consultant told me its not beneficial to be on them long term and two years post SCT is what the guidelines are.
  He has been correct as i am doing pretty good so far and coming up to the end of my fourth year 😀 This next year is the one i want to get through I aim to prove to Dr Jalihal he was wrong its not a Five year Lease I aim to make it a lot longer (might need his help every now and then He he)they say 9 years is the new 5 years so when i get to the 9 years it will have moved up more, so nice and steady does it 😎

  Tom Onward and Upwards xx

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