Velcade and Tremendous Leg Pain

Dear Cath;

Here is a site that may interest you:

http://www.medicalnewstoday.com/articles/58676.php

It appears to be the next progression for us who have "maxed out" on Rev.

Best of luck;

Kevin

Thanks Kevin -- I've had a look at the site and I'd be worried to try the Doxil/Velcade combo because of the bad side effects I had with Velcade on its own -- however I'll keep an eye on the site for further info on MM drugs.  The Revlimid is only starting to fail, and my paraprotein is only going up by 1 point per month so if it stays at that rate I'll be OK for several years!  After all, I did get up to 90, which is 9000 in USA terms, but I honestly did not feel worse though there was probably damage occuring at that time.  Still it may deteriorate more quickly as time goes by so I'll need to find the next drug as soon as possible- just in case!  Many thanks for your help!  Best wishes, Cath

Thanks Susan for your words of care and support!  I certainly have not given up HOPE and in fact I've had the best 15months since I was diagnosed!  It was actually worth all the pain and trouble of the other trials to finally reach the Revlimid - which works for me!  We are very lucky here in Australia as having MM is not nearly as expensive as it is over there, so thats not a worry.

I'm glad that Denys is having help in Little Rock -- that sounds like a fantastic centre at the forefront of treatment for MM in the US.  The other one appears to be CTCA which seems to have a very positive outlook and covers both traditional and alternative approaches to cancer treatment.  I recently read a book called Theres no place like HOPE  by Vicki Gerard who had breast then terminal secondary bone cancer and has been in remission for many years.  Her approach is so good - uplifting and practical - I wish that I had found it earlier! Denys might enjoy it too. 

Best wishes to you all for a safe and happy holiday season.  My thoughts and prayers will be with you all for the 23rd of Jan!  Hopefully Denys has the bone marrow biopsy done under a light anesth. - I always do and it makes it so much easier.  Our pallative care nurses advise extra pain medication before undergoing activities that you know will be painful - like skeletal surveys, CTs and sestimibi's - only because you have to lie on a hard flat table for up to half an hour - and now I do this and its true, its much more palitable.  Anyhow, I'm sure Denys knows what to do to make the whole process much easier.  Take good care, Cath

I hope all your Holidays are decorated with  the laughter of loved ones, the warmth of Good Cheer and Every Joy of the Season.

Wishing you "All" Well during your Treatments, Sunny Days Ahead, and Prayers for a Holiday filled with Peace, Love, and Happiness for You and Yours.

Warmest Regards,

Susan

hi my husband had very bad leg and feet pain the tablets helped a little but it still caused him a lot of pain this apparently from having velcade i took him to the gym and he does light exercises on the tread mill the bike and one with two big paddles dont know what it is called after about 2 weeks twice a week he is coping with the pain much better hope this helps he still takes the pain tablets