All on rev/dex, we need your input quickly

Dear Kevin,

It is so good to see you back on the message board.  I've thought about you every day and kept watching the board for messages from you.  I hope all is going well with your transplant.

We are in the process of running tests to see if my husband will be able to have a transplant.  He has had lung function and an echocardiogram and is scheduled for a stress test on April 1.  He has had these stress tests each year since his heart attack.  Also have a blood specialist that will see him concerning his factor five leiden clotting disorder.  That is going to be a problem as the docs say he will be off his blood thinners for the transplant.  It's going to take a team of doctors to get him through a transplant!  This new doc wants all of his records for everything that has been done to him for as far back as we can get records.  We may get more answers from him than from any of the others.  Never had a doc want that much info before. 

Thanks for all the info on what you are going through.  Will have my husband read all of it so he has a idea of what to expect.  It has also brought up some questions that I will need to ask the Omaha doc about.  I have wondered why they don't continue his present treatment as long as it is working so well.  She WILL explain that to us on the next visit. 

Are you done with the chemo now and starting the recovery process?   Do they give you any idea of how long you will be in the hospital? 

Do keep us posted on your progress.  We're thinking of you.  Take care and stay positive.

Jan 

Hi Jan and everyone,

I started out dec 06 with Rev at 30mg and Dex at 40mg because of the side effects my doctors lowered the dosage to 15mg and 20mg of dex, the Rev I am still on a 21 day cycle and the dex is now just once a week instead of the 4 day cycle which is a little better for the side effects. AI still have the numbness if hands and feet and my face around my nose and mouth but it is doable -- my m-protein is .43 -- my doctors at Cleveland are going to do a harvest only with storing the stem cells untill I would need them -- I have been on Rev for 15 months the doctors at Cleveland have said I will stay on Rev untill it no longer works how ever long that is.--also because Rev surpresses stem cells they need to do the havrvest now ---low m-protein and good health-- this is new so it is taking a while to get the protocol in order (they do the stem cell transplants but not just the harvesting) but I will have the same testing I have had the bone survey, bone biopsy, blood work (which I have every 28 days) also since this is BIG business we must wait to see what test the insurance company wants!! I will also be given a human growth hormone for 5 days, to push the stem cells out of the bone (which they say is painfull) and they will evaluate my veins to see if needles or a port will be used. But I will not be going off the Rev or dex thru this. There are studies out there that show you can maintain with low dose of Rev and dex but again with MM everyone is different just be sure to present all avenues to your doctors be informed know what is out there and listen to what your body is telling you-- I opted to stay on Rev and Dex and deal with the side effects. There is a lot to say but I will quit rambling for now.

Kevin I am glad to see you back on the site. I am praying all goes well and God continues to heal and give you the strenght you need when you need it.

Susie

Good Evening Jan;

It is so good to see you back on the message board.  I've thought about you every day and kept watching the board for messages from you.  I hope all is going well with your transplant.

I appreciate your thoughtfulness. All is progressing as well as expected. If you need more details see my follow up on "EVERYONES ASSISTANCE".

Are you done with the chemo now and starting the recovery process?   Do they give you any idea of how long you will be in the hospital? 

Chemo is done! Bring on the recovery. My blood counts are very low. In fact a subcomponent of my whites, Nuetraphylls (sp) are at ZERO, have been for last 2 days. They won't consider D.C. until they rise to 500. Hopefully sometime EARLY next week. 

We're thinking of you.  Take care and stay positive.

And you do the same.

Take care;

Kevin

Good Evening Susie;

my m-protein is .43

That's an impressive number!

I will also be given a human growth hormone for 5 days, to push the stem cells out of the bone (which they say is painfull) and they will evaluate my veins to see if needles or a port will be used.

I was self administering NUEPOGAN shots, 3 X 300 units needles each day for 10 days. The needle is so thin you hardly feel it. Push the juice slowly or it will burn somewhat. As far as bone pain I had none. But then, compared to the bone pain surrounding MM (and BM Biopsy) nothing could compare. If you're going to be in for awhile the port is the way to go.

Kevin I am glad to see you back on the site. I am praying all goes well and God continues to heal and give you the strenght you need when you need it.

I thank you and feel that God has blessed me with a very supportive family, friends and my extended family here at CC.

Take care;

Kevin

Hi Susie,

Thanks for the information.  My husband's m-spike is at .7 right now.  I'm sure that is why they want to harvest stem cells at this time.  When your dose of rev was lowered, did you have to have lab work each week or every two weeks for a while to make sure your counts were holding?  My husband has not had the side effects that you spoke of , but did have problems with blood clots.  He also has a clotting disorder and we expected he would have blood clots.  He is on blood thinners and now has a greenfield filter in place to keep the clots from traveling to vital organs,

From reading the messages on this site, I can see that many people are on lower doses of rev.  I know there are studies out there about lowering the dose of rev, but I haven't found them.  If you know where I can find them, please let me know.

If I may ask, why did you decide to continue the rev/dex rather than have the transplant shortly after harvest?  This is what we are trying to decide, whether to stay on the rev/dex or have the transplant.  Anything you can tell us will help.  Also, there seems to be a limit with insurance on how long they will pay to store the stem cells.  Did your doctor say anything about that to you? 

Thanks again for your information.  Everything helps.

Jan

Jan,

My doc felt that the rev/dex combo was working well and I really didn't think jumping to the stem cell transplant would give me the greater options--I wanted to stay away from chemo until it was my last option and the rev/dex has worked. I have such bad reactions to meds the fewer the better  for me. I am not sure how long the stem cells keep but we are aiming for 14 million hopefully we can get that. As far as the insurance company we are still waiting for answers from them.

I will look in some of my notes and papers I have kept on the studies for lower doses of rev/dex I am thinking it was ASH and SWOG (Southwest Oncology Group) Celgene Corporation the makers of Revlimid these sites are very helpful and full of info but I will get the exact sites for you swog was who I did the study under.

praying all the best

Susie

Jan,

If you go to  www.cancerconsultants.com  put in multiple myeloma in the articles there is on on rev/dex and lower dosages of the dex. Hope this helps.

Praying

Susie

Good Morning Susie;

"I am not sure how long the stem cells keep but we are aiming for 14 million hopefully we can get that."

That's ALOT of stem cells! My Dr. told me they only needed 2 million for each transplant. I ended up harvesting 7.3 million. Enough for 3 transplants.

As far as shelf life goes, they are frozen so cold, there probably is no loss for up to 5 years! Even after that it has to be negligible. These boys have their CRYOGENICS done pat.

Take care;

Kevin

Kevin,

It sure sounded a lot to me less sounds better maybe it won't take as long. Everything I had read said 2-4 mil maybe they just are greedy! I will need to ask again. I like to be on the same page and know what is going on.

My biopsy came back with my 13 chromosome  in Dec 06 it had been deleted my doc said there was a study in Canada that revlimd could restore the 13th. I haven't read anything about revlimd doing that but something did.

Take Care Thanks

Praying everything is going well,

Susie

 

Hi Jan!  i was just reading through some of these back messages and came across this one of yours talking about Rapamycin and CCI-779.  I am actively looking for anything that will assist the Revlimid to keep working for me and as you said that these were to be used in conjunction with relapse MM and Revlimid I'd just ask if you had any more information?  Revlimid is still working fantastically for me at the moment, but I'm just trying to cover my bases before anything goes wrong!    Many thanks in advance, Cheers, Cath