CancerCompass message board discussion started by Bayshore on 11/24/2007 http://www.cancercompass.com/message-board/message/all,18302,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My sister Denys is suffering huge leg pain from the Velcade.  She is going into her 5th cycle and says that her leg is killing her.  Denys said that it feels like electrodes in her leg.  The Dr. has her on a pain med and it was helping now it is not.  It isn't oxycotton it is another name.  She is in so much pain she is hardly able to sleep.Has anyone else experienced this type of pain? Bayshore Sat, 24 Nov 2007 00:00:00 GMT I need to know what the Dr. can prescribe for this leg pain?  The Velcade is working, blood work is good.  Going  back to Little Rock on January 23, to see how much my MM has dropped.  It is just this dam leg pain I cannot stand anymore..Please, if anyone can help????? Bayshore Sat, 24 Nov 2007 00:00:00 GMT  On 11/24/2007 Bayshore wrote:My sister Denys is suffering huge leg pain from the Velcade.  She is going into her 5th cycle and says that her leg is killing her.  Denys said that it feels like electrodes in her leg.  The Dr. has her on a pain med and it was helping now it is not.  It isn't oxycotton it is another name.  She is in so much pain she is hardly able to sleep.Has anyone else experienced this type of pain?Hi there, sorry you have to go thru this.  I was diagnosed in 2000.  I finished Velcade about a year ago after about 5 months of it.  I too experienced the same thing with the Velcade, incredible leg pain (what I would imagine "restless leg" would be like times a thousand) in both legs and feet.  In fact, it even got worse after I stopped taking Velcade.  It got worse for about a month and took about 10 months to gradually go away.  I was on Neurotin for the pain and even Vicodin. It takes awhile for the Neurontin to start working.  The Velcade wasn't very effective for me.  I switched to Revlemid and have been on sucessfully for a year now.  It's my last defense with the exception of a possible mini-alo stem cell transplant.  I have had 2 autos.I am very happy the Rev is working where Thalidomide caused permanent peripheral neuropathy mostly in my feet and some in my fingertips.Please feel free to write me.  We can even talk on the phone if you want... Good Luck...love,jer jerryeisen Sat, 24 Nov 2007 00:00:00 GMT When I was first diagnosed August of 2006 was immediately put on the Revilimid.  It worked to a point and brought the MM down  to 90% then stopped.  I aleady had stage 3 by the time it was diagnosed, and my kidneys were failing...I then went through a Autologous stem cell transplant and within 3 weeks after the transplant , my MM had doubled.They then started me on Velcade, which seems to be working (I pray is doesn't stop).  My blood work is good.  Havent needed any blood or platelets. My platelets are not great but, they are not critcally low either. The pain is terrible in my leg.  I already booked my airfare back to Little Rock, Arkansas for January the 23Th.  This  is my regular oncologist and he will check my counts and give me another bone bisopy to make sure everything is working before I return home to Florida again. I feel like I am fading away.  My legs are sticks and I am unable to work out because of the pain in my leg. My back is deformed from all the collaseped disks I had.  I had the kypoplastys done on seven disks.The best Christmas and New Years gift will be that the MM is going into remission, even at least for a while.....  What did the Dr. prescribe for you for the pain in your leg???if anyone knows from experience of what can be done or precsribed for the pain in my leg, Please, Please, let me know. Thanks for your response...Peace...... Bayshore Sun, 25 Nov 2007 00:00:00 GMT  Sorry you were on Neurontin for the leg pain, I will find out from my Dr.Thanks so much Bayshore Sun, 25 Nov 2007 00:00:00 GMT  On 11/25/2007 Bayshore wrote:When I was first diagnosed August of 2006 was immediately put on the Revilimid.  It worked to a point and brought the MM down  to 90% then stopped.  I aleady had stage 3 by the time it was diagnosed, and my kidneys were failing...I then went through a Autologous stem cell transplant and within 3 weeks after the transplant , my MM had doubled.They then started me on Velcade, which seems to be working (I pray is doesn't stop).  My blood work is good.  Havent needed any blood or platelets. My platelets are not great but, they are not critcally low either. The pain is terrible in my leg.  I already booked my airfare back to Little Rock, Arkansas for January the 23Th.  This  is my regular oncologist and he will check my counts and give me another bone bisopy to make sure everything is working before I return home to Florida again. I feel like I am fading away.  My legs are sticks and I am unable to work out because of the pain in my leg. My back is deformed from all the collaseped disks I had.  I had the kypoplastys done on seven disks.The best Christmas and New Years gift will be that the MM is going into remission, even at least for a while.....  What did the Dr. prescribe for you for the pain in your leg???if anyone knows from experience of what can be done or precsribed for the pain in my leg, Please, Please, let me know. Thanks for your response...Peace......My doctor prescribed Neurontin which was effective to a degee but it takes a while to start working.  Also, Ativan is helpful.  especially while trying to sleep.  I was also on Ambian CR for sleep.  The pain just seemed to fade away after what seemed an eternity.I would consider these meds.1. Neurontin2. Ativan3. Ambian CR for sleep4. Vicodin as a last resort after trying Acetaminophen and other over the counter anti inflams and pain meds like IbuprophenI too have crushed vertebrae, I know what you are going thru.  I lost about 3 1/2 inches of height from many vertibral collapses.  they didn't have kyphoplasty back when my damage was done. How has the kyphos worked out for you?   good luck with the pain Darlinjer jerryeisen Sun, 25 Nov 2007 00:00:00 GMT While on Velcade I also experienced a lot of discomfort and numbness in my feet and legs. Although I was assured that the side effects of Velcade will go away after it is discontinued, it still is a problem after 3 and 1/2 months of remission. The doctors at Moffitt have suggested that when those side effects become a problem and if the counts are stable or going down, they recommend cutting back on the Velcade dosage I trust this will soon be a problem of the past   Stay Positive Mon, 26 Nov 2007 00:00:00 GMT Denys is currently be treated at Moffit.  They have lowered her dosage of the Velcade and it seems to be helping.  She is returning to UAMS in Little Rock on January 23 for testing.  We are all keeping our fingers crossed and remaining positive. I want to Thank You for  responding and I wish you well.  I pray my sister keeps  positive, this is one of the toughest fights for her life.  NOone deserves to to have to live like this.  I pray it finally goes into remission, she really needs to hear good news for change . Bayshore Sat, 01 Dec 2007 00:00:00 GMT Please Please Please see a doctor as soon as possible and make them check for blood clots!  If one can't find it, seek a second opinion.  These new treatments are known for clots and this pain sounds so suspicious!I was on Velcade for four cycles and ended up with the mother of all headaches -- Nothing I have had has ever been as painful and I have been through many, many things.  They immediately took me off of the Velcade and put me in the major cancer treatment hospital -- gave me all sorts of pain killers -- did every test in the book -- but it took a week to subside with no conclusive diagnosis.  From then on I went downhill coming home to spend almost a month in the regional hospital followed by a month in the hospice. Ultimately I was sent home so I could die at home -- no one expected me to live. By this time I had lost 50kg and was unable to eat anything. Due to all the 'treatment' for the Velcade/headache I ended up totally clogged up with the worst constipation ever and no appitite.  I won't go on and on, but basically my wonderful carer, my husband, quite literally 'nursed' me back to health over the ensuing 4 months and then I 'found' Revlimid on the internet and encouraged my oncoloogist to try it.  Revlimid has made all the difference in the world for me - though not for some others -- but I've LIVED for the past 15 months.  My paraprotein has dropped from 90 to 7 because of Revlimid but is now starting to rise by 1 per month -- I don't know how much longer I've got on it, but I'm already looking for what to take next!  Its not easy staying one jump ahead!  Your sister is blessed to have you and your concern and love.  Please check out the blood clot situation -- does she take any aspirin?  I know I'm not a doctor but extreme pain in an extremity can be a symptom of a blood clot.  For many doctors drugs like Velcade are really NEW as they only see one or two cases of myeloma in their practice lifetime. Try to see someone who knows about the drug and express your concern.  Good luck -- please let us know how Denys is going,  Cath poppy/cath Sat, 01 Dec 2007 00:00:00 GMT The Dr. already checked for blood clots , thank god she doesn't have any and hope she never does.  I am soo sorry you are going through some much.  My heart and blessing's go out to you.  Denys didn't respond to Revilimid.  You sound just like her when you say you need to stay one step ahead.  She is very concerned if the Velcade stops working , what else will they have for her, I can tell you she is very scared and doesn't want to die.  Her insurance does not cover clinical trials.  Having Cancer as you know if  very expensive.The MM clinic in LIttle Rock is truly remarkable.  They really do customise each patients plan of attack on their myeloma.   She is going back on January 23 for yet another Bone Biopsy, and all the other tests.I hope she gets good news about not having anymore leasions.  From what my sister days she has over 100.  Please stay strong and don't give up.  I do realise that a person such as myself who doesn't have Multipe Myeloma it is easy for me to say. My sister says it is just plain awful and there are days where she doesn't want to go through this anymore but, she wants to live so she does.  So far Denys has no quality of life everyday is a Huge struggle God Bless you and my sister Denys. Susan  Bayshore Sat, 01 Dec 2007 00:00:00 GMT 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 K. C. Sat, 01 Dec 2007 00:00:00 GMT 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 poppy/cath Sun, 02 Dec 2007 00:00:00 GMT 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 poppy/cath Sun, 02 Dec 2007 00:00:00 GMT 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 Bayshore Sun, 02 Dec 2007 00:00:00 GMT 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 Mobil Wed, 05 Dec 2007 00:00:00 GMT