How Long Of Revlimid

Can anyone taking Revlimid tell me how long they have been on the drug?  My husband is on his 3rd round and it is bring the MM down fast.  He was at 3600 3 months ago and now is at 1832.  His one doctor says he wants him off of it as soon as he can but I was thinking that his transplant doctor said as long as it was working he would stay on it.  Dave is getting along very well with it without the Dex.  He started out on both and has a terrible reaction to the Dex.   His MM is going down and the Red & White count is very good but he is still sooooooooooooo exhausted.  He sleeps alot during the day along with the night,  Is anyone else having problems like this.  I guess I am hoping that it is not a depression issue.  Please hurry and someone reply.     Connie

My mother has MM so we have gone through the exact same exhaustion. We thought it abnormal too when we first saw her so consistantly tired. In talking to many people in Little Rock (where she is being treated) it would be abnormal not eventually go thru these periods of extreme exhaustion. Hang in there, it will get better.

Good Evening Connie;

I've been on Rev since July 3, 07. I started with the 21/7 day cycle but then the Dr. added Velcade and changed my 21/7 to 14/7 so it coincided with the Vel treatment. This way I rest from both meds at the same time.

I just finished up my 7 th cycle of Rev and my 6 th of Vel. But I'm also on Dex. So as you can see I'm on a pretty aggressive treatment plan. My research has shown that the Drs. are now considering this treatment for first time patients and not waiting for relapse. No side effects, yet, so as far as what I've read about the Rev and Vel lessoning each others side effects holds true.

My MM Dr. wanted to do a stem cell transplant this week! My M-spike is only down to 1.3 and my IGG to 2013. I told him I wanted to lower my #'s as low as possible before I went in for the SCT. He didn't like that but I stuck to my guns and we agreed that until I plateau or the #'s start to rise I can remain on the treatment plan. Thank goodness I did. Last evening I spoke to someone in the MM field and they told me that you shouldn't consider a transplant until your spike is under 1.0 In fact, .6 is what they're shooting for.

Keep in mind, that initial harvest is the best you're going to get. The desease builds up somewhat of a tolerance and when you go in for the frozen unit they already drew after you relapse you definately want those #'s to be as low as possible.

That's the beauty of this site. The information I have learned from fellow patients and caregivers have allowed me to be a more informed individual. The Drs. don't always like that but, this is my life and my decision. They aren't God, even though they tend to think of themselves that way!

As far as the fatigue. Yes, I could take a mid afternoon nap every day. Sometimes I even do! But I just try to weather through it and if I have to I hit the hay earlier that night.

Hope this helps. Take care and enjoy the upcoming holiday.

Kevin

Hi Connie!  I've been on Revlimid for 15 months now -- alone, without Dex.  I have not had any side effects and like others, I can have an afternoon nap most days.  My paraprotein - as measured here in Australia - got as high as 90 and went down to 7.  After 15 months it is now 11.  I have heard from one of the top men in the MM field that the average useful life of Revlimid is 15 months -- and by the look of it my very slowly climbing paraprotein rate is probably indicative that Revlimids effectiveness is starting to fail.  I began on 50mg, went down to 25mg, and have been on just 10mg for the past 12 months.  It has been heaven compared to all the side effects and problems I had with everything from VAD, Cyclo, Thalid, Vecade, etc plus radiotherapy!  I feel blessed to have had this past 15 months and only hope that I can continue for many months to come.  I don't think he's depressed -- its just a combination of the drug and the disease.  Best wishes, Cath

My mom has been on revlimid for just over two weeks.  25 mg a day plus once a week she takes 10 dexamethasone pills.  I have noticed a change already.  She has more energy and is acting more like herself.  Her hemoglobin has consistantly gone down w/ blood tests but for the first time last week her hemoglobin actually went up a little bit.

 I'm hoping that this does the trick and sends her back in remission.  She's had a rough couple of years.

Best wishes to your mom!  As you will see from previous entries I've been on Revlimid for 15 months and before that I had blood transfusions (2 bags each time) every three weeks for a year because of my low hem.  Now my hem, which use to go down to 90ish, is up to 145 - the highest ever since I was first diagnosed and I have heaps of energy.  Good luck for your mom -- I started at 50mg, went down to 25mg and finally stabilised on 10mg of Revlimid per day for 21 days with a 7 day rest - with NO dex. - 12 mo ago.  Basically no side effects with the exception of mild loss of appitite occasionally -- but I force myself to eat something even on those days and continue to drink at least 2 litres of water every day.  I hope that your mom gets the same value that I've had with Revlimid and that there will be something else for her when she needs it.  Best wishes, Cath