Going To Try Revlamid

Hi Marge~~

I don't have cytomas but I've had myeloma for 4 1/2 years and have had all of the standard treatments as well as some trials.  At the moment I have been on Revlimid for 9 months and am better than ever before.  I had problems with thalidomide and velcade, but no of those things happened with Revlimid.  The only problem was that my blood levels dropped too fast on 50mg, so I went to 25mg, and am now on 10mg per 21 days with a 7 day rest period.  For me its been the best treatment of all and I just hope and pray that I can stay on it forever!  Good luck to your husband -- I'm sure that you will understand by reading the letters of others that this disease is very individual and no two people seem to be the same!!  No wonder it makes treating myeloma so difficult!  Cath

 Revlamid has proven beneficial in a lot of cases but like all chemo etc it works better on some than others.  It is supposed to have less side effects.

www.cancercenter.com have lots of information too. 

On 5/6/2007 Poppy wrote:

Hi Marge~~

I don't have cytomas but I've had myeloma for 4 1/2 years and have had all of the standard treatments as well as some trials.  At the moment I have been on Revlimid for 9 months and am better than ever before.  I had problems with thalidomide and velcade, but no of those things happened with Revlimid.  The only problem was that my blood levels dropped too fast on 50mg, so I went to 25mg, and am now on 10mg per 21 days with a 7 day rest period.  For me its been the best treatment of all and I just hope and pray that I can stay on it forever!  Good luck to your husband -- I'm sure that you will understand by reading the letters of others that this disease is very individual and no two people seem to be the same!!  No wonder it makes treating myeloma so difficult!  Cath

Hi Cath,

Lucky you!  In my country Revlimid is not available yet for MF patients and I'm waiting for it like the messiah...

Are you on some sponsored research program or you get simply a prescription from your doctor? Any side effects?

Best wishes,

Quo vadis

hello

 i was reading messages and saw yours. how is it going on the revlimid? my husbad has mm and has gone through the stem cell transplants and  it has flared again.he has chosen to do the revlamid.you have been using it for a while any input?

On 6/22/2007 Fatpigs wrote:

hello

 i was reading messages and saw yours. how is it going on the revlimid? my husbad has mm and has gone through the stem cell transplants and  it has flared again.he has chosen to do the revlamid.you have been using it for a while any input?

My husband has had multiple myeloma for 7 yrs.  After no luck with

various chemo treatments and radiation we went to Mayo's to try a

stemcell transplant.  He is 72 yrs. old and also has the soft tissue

plasma cytomas too.  Everything went wrong up there.  first he got the

chicken pox, then a serious infection called C-Dificile which caused

endless diarrhea.  Then the sicker he got, he went into Sepsis and

Sepsis shock.  was there for 5 months mostly in the hospital and ICU.

When he finally came home the only left to try was the Revlimid.  Next

monday he will be finishing the second round of Revlimid along with

Dexamethasone.  He has done well with it so far and it has even reduced

a tumor on his inside thigh that we could feel to keep track of.  the Drs.

assume then that it is reducing the other tumors.  The biggest one being

in the abdomen.  So we are holding out a lot of hope with this Revlidmid.

He hasn't been scanned yet to see how the more internal tumors are

doing.  He has had mm in the skull bone (where it began), the spine,

upper arm, and abdomen.  I understand that it is rather rare to have the

plasma cytomas with the mm but it is all mm. I don't know at this point

how long he can be on Revlimid or if it is un-ending.  So good luck to

you.  Drs. have said it is a good med, and we are counting on it.

Hi all -- I don't know how long ago you all wrote these messages, but it seems to be about 6 months ago.  I just thought I'd let you know that I've been on Revlimid - 10mg- NO Dexamethasone or anything else except pain meds, for 18 months!  I have had no side effects from the Revlimid, but am usually neutropenic so I make sure that I don't come in contact with people who are ill.  My paraprotein got as high as 90 before I started with the Revlimid, but it has been 7 to 10 for many, many months now.  I've been told that 15 months was probably as much use as I would get, but I'm now three months past that point and still going strong!!  I have felt better on Revlimid than on any other drug, almost better than before I was diagnosed.  l would recommend Revlimid to EVERYONE and would pray that it was as successful for them as it has been for me.  I will continue taking it for as long as possible and hope that there will be something new discovered before too long!!  Good luck to you all, Cath