CancerCompass message board discussion started by wevebeenthere on 3/14/2008 http://www.cancercompass.com/message-board/message/all,22005,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Cancer Compass Friends,We need to know how long you have been on rev/dex treatment and what your docs have told you about the amount of time you can continue the treatment.  We are getting conflicting information from our two docs.  Husband is in near complete remission and numbers are holding.  We had hoped to delay transplant until Aug, 2008 when he retires.  One doc says that would be okay, the other says he can't continue on rev/dex and is already past the 4 or 5 month limit.  The one putting the time limit on us is a transplant specialist.  The one that says we can wait is our primary oncologist.  Also, what tests need to be done before hand to decide if he is in good enough health to go through a stem cell transplant?  Lung function?  Heart function?  Kidney function?  We aren't getting the answers we need.  HELP PLEASE!!!  He has other health issues involving all three.K.C., it is good to see you back on screen.  Your information has been very helpful.  I have learned so much from the information you have passed on to others.  I hope all is well with you. If anyone sends a private e-mail, please include cancer compass friend under subject, so I know it is safe to open.Thanks to all of you.WBT  wevebeenthere Fri, 14 Mar 2008 00:00:00 GMT Hi WBT ~~I have been on Revlimid for almost 20 months now and my paraprotein has been steady for most of that time.  I have taken the Rev alone as I get terrible side effects from Dex.  My dose is 10mg x21 days then 7 off.  I asked one of the top men here in Australia how long one could stay on the Rev and how long it would be effective.  His response was 15 monhts.  After that he felt that the Rev generally looses its efficacy. So, I may be on borrowed time, but I'm making the most of it! Apart from being neutropenic most of the time, I have not had any problems. It has just meant that I have to be very careful and stay clear of people who are sick because my immunity is low.  So far, in all that time, I've only had one bout of pneumonia and that was because I had my grandson visiting and I over exerted myself and was open to all bugs because I was so over tired -- silly me, but it was so much fun playing with that little guy!!I am not trying for a transplant as I have been told that I am not suitable so Rev is my main hope to hold this disease at bay.  I'm currently doing research into what I will suggest to my oncologist if/when the Rev no longer works.  For the average time to be 15 months, then many people go off it after just a couple of months and many people use it for a very long time.  I want to be one of the later -- I want to keep using it for as long as it is working, and so far so good.  Of all the drugs I have used - and thats most of the known MM drugs - Rev has been the very best for me in that it has reduced my paraprotein from 90 to 8 and held it there for over a year without any side effects -- the very best drug for me since diagnosis.  I can't understand why they would want to stop you when things are going so well.  Surely they should continue until just before you are ready for the transplant?!?Take heed of what Kevin will tell you -- he is a virtual encyclopedia and knows heaps about the transplant side of things as he has been doing his own research prior to his own transplant.  Best wishes WBT -- I hope others have useful info for you -- Cath  poppy/cath Fri, 14 Mar 2008 00:00:00 GMT Dear Cath,Thanks so much for your reply.  Your messages to others have been very helpful, as have Kevins.  Thanks to Kevin asking for my husbands lab numbers, I spent a day getting the lab sheets organized and put in a notebook and labeled.  I have gotten copies of most everything that's been done since the beginning.  It was a big help on the last trip to the transplant doctor.  I should have added to the other message that that doctor did not want to discuss other options with us, only transplant.I do have questions that you may be able to answer.  You talk of paraproteins, can you explain what that is or perhaps give me another name to look for them in his reports?  Is that M-spike or protein levels in the blood work?  If I may ask, how did they decide that you were not suitable for transplant?  That is a big question for us, because along with MM, my husband has crohns disease, factor five leiden clotting disorder, has had a heart attack, and has been treated for b-cell lymphoma.  You see why we are concerned about transplant!!  The drugs used to treat his lymphoma are some of the same drugs used to treat MM, so does that mean that he is a new MM pateint or one that has had a one other treatment?  I want them to evaluate him to see if he can withstand the transplant process.  The doc wants him off rev to harvest stem cells, then he would go back on rev/dex, and transplant in a couple of months.  Harvest cells yes, but first see if he is suitable, because the harvest also involves chemo.  Why go through all that if transplant is not possible?I've been looking into proteasome inhibitors.  One called Rapamycin is in clinical trials and could be given with Revlimid.  From what I understand, they work to keep the MM cells from developing resistance to the Revlimid in relapsed patients.  I think the drug number is CCI-779, but wouldn't you know that I can't find my sheet I had it written down on!  I'll keep looking.Thanks again for responding.  It means so much to visit with people who are going through the same thing.  Do take care and you are in our prayers.Jan (WBT)  wevebeenthere Sat, 15 Mar 2008 00:00:00 GMT Good Evening WBT;"We need to know how long you have been on rev/dex treatment and what your docs have told you about the amount of time you can continue the treatment...The one putting the time limit on us is a transplant specialist."  I was on Rev/Vel/Dex from July 07 until late Jan 08. Only stopped due to my upcoming SCT. When I asked my local Dr. how long I could remain on this "cocktail" he told me 8 months is standard, he could push for 12 as long as I wasn't suffering the side effects. He also said that the beauty of these drugs is that they're reversible. Knock back the dosage and the side effects subside also. My feeling is that you can probably take these drugs as long as you have no serious side effects AND they're doing their job."Also, what tests need to be done before hand to decide if he is in good enough health to go through a stem cell transplant?  Lung function?  Heart function?  Kidney function?" Prior to my transplant consideration I had all the above tests done and also a full skeletal x-ray. And just before the first serious chemo infusion I had 26 vials of blood taken! K.C., it is good to see you back on screen...I hope all is well with you. Thank you for your kind words. It's good to be back. I had been in Philly for some CYTOXAN. Not for sissies!Take care;Kevin K. C. Sat, 15 Mar 2008 00:00:00 GMT Good Evening (again) Jan;"You talk of paraproteins, can you explain what that is or perhaps give me another name to look for them in his reports?  Is that M-spike or protein levels in the blood work? "The numbers my Dr. always talks to me about are: M-spike, the IGG, IGA IGM numbers, Beta-2 Microglobulin, and the Kappa and Lambda free light chain."If I may ask, how did they decide that you were not suitable for transplant?  That is a big question for us, because along with MM, my husband has crohns disease, factor five leiden clotting disorder, has had a heart attack, and has been treated for b-cell lymphoma.  You see why we are concerned about transplant!!"You may want to e-mail ZAZU after reading his post on SCT as he has provided an informative rationale concerning suitability."...The doc wants him off rev to harvest stem cells, then he would go back on rev/dex, and transplant in a couple of months.  Harvest cells yes, but first see if he is suitable, because the harvest also involves chemo.  Why go through all that if transplant is not possible?"First step is to see if he is able to be harvested. Then he will be off all chemo meds and Dex prior to the harvest. Then they administer some serious chemo and then harvest his cells. Take care;Kevin K. C. Sat, 15 Mar 2008 00:00:00 GMT  All doctors are different.  My friend here  (male) had to have his M protein at zero first, then they took him off Dex and Revlamid, and harvested his cells.  they are waiting in if his numbers stay down they will not transplant for now. So each doctor seem to have a different approach. L is back on Rev but not sure how long for.  He also takes alternative therapies along with his chemo. Hope this helps. The definition of a paraprotein is as follows so I am presuming they mean you M spike:" .A paraprotein is an abnormal protein in the urine or blood, most often associated with benign MGUS (monoclonal gammopathy of undetermined significance), where they remain "silent",[1] and multiple myeloma. An excess in the blood is known as paraproteinemia.These are immunoglobulins or immunoglobulin light-chains that are produced by the clonal proliferation of plasma cells. Paraproteins form a narrow band, or 'spike' in protein electrophoresis as they are all exactly the same protein.Monoclonal free light chains in the serum or urine are called Bence Jones proteins." hope this helps MMSOn 3/15/2008 K. C. wrote:Good Evening (again) Jan;"You talk of paraproteins, can you explain what that is or perhaps give me another name to look for them in his reports?  Is that M-spike or protein levels in the blood work? "The numbers my Dr. always talks to me about are: M-spike, the IGG, IGA IGM numbers, Beta-2 Microglobulin, and the Kappa and Lambda free light chain."If I may ask, how did they decide that you were not suitable for transplant?  That is a big question for us, because along with MM, my husband has crohns disease, factor five leiden clotting disorder, has had a heart attack, and has been treated for b-cell lymphoma.  You see why we are concerned about transplant!!"You may want to e-mail ZAZU after reading his post on SCT as he has provided an informative rationale concerning suitability."...The doc wants him off rev to harvest stem cells, then he would go back on rev/dex, and transplant in a couple of months.  Harvest cells yes, but first see if he is suitable, because the harvest also involves chemo.  Why go through all that if transplant is not possible?"First step is to see if he is able to be harvested. Then he will be off all chemo meds and Dex prior to the harvest. Then they administer some serious chemo and then harvest his cells. Take care;Kevin  mmsurvivor Sat, 15 Mar 2008 00:00:00 GMT Hi Jan~~ You asked why I was not considered suitable for transplant and this comes down to my reactions to the various drugs that I have used over the past 5 years.  I had VAD, Cyclo, Thalid, Velcade, Aridia, --and worst of all, dexamethasone.  With all of these I had initial drop in my M-spike/paraprotein levels, but after a few weeks the various side effects were so horrific that I almost died on three occasions.  Vecade gave me the 'mother of all headaches' which lasted for over a week and I lost 50kg because I couldn't eat for 3 months which meant tube feeding, it was not pleasant.  Thalid. left me with neuropathy in my hands which has taken over two years to reduce to a managable level, as well as constipation which almost required medical treatment to remove.  But for me, the worst was the dexamethasone which caused my bowel to perforate twice requiring two bowel resections which were followed by massive abcesses and weeks of hospitalisation.  All of these 'side effects' mean that the doctors couldn't give me the chemo necessary to do the transplant.  So, I have resigned myself to the fact that I won't be having one.  Now, as you know, I've been on Revlimid for almost 20 months without any side effects of any note, and feeling better that I have since I was first diagnosed.  I will stay on this for as long as possible and hope that this will be months/years more.  When you asked about the paraprotein, thats the Australian measurement of the M-spike.  Apparently a normal person has NO paraprotein in their blood, but MM patients do.  When I was first diagnosed it was in the 20's then went down with treatment to below 12 and then as I had to go off of the various medications the level crept up over the years until it reached 90.  According to my doctor there is no 'cut off' point, but some people are very sick at say 35 and others don't seem worse at 90.  I wouldn't have known it was 90 except for blood tests.  Now its been 8 for over a year and a half so I'm not complaining.  Reading what you've said about all of your husbands other issues, I'm amazed that the doctor does want to do a transplant.  As I'm sure you have read from Kevin, the whole transplant process is quite intense and takes it out of the best of patients.  Down here in Australia they are reluctant to do transplants on 'older' patients -- which seems to mean over 65.  But, you are living in the most advanced country for MM treatment in the world and perhaps they have ways of dealing with age and all the other illness factors so that they can transplant safely.  There are a couple of good message board discussions on transplants that you should read -- they will give you a good cross section of many peoples reasons for and against having one.  But the bottom line for me with your situation is ...why are they stopping Revlimid when it is still very effectively doing its job??  I just don't understand.  You can always get a second opinion if your doctor won't discuss any other options.  I'd seriously consider it.  Best wishes in your search for answers -- the more information that you have the easier it will be to make your decisions.  Kind regards, Cath poppy/cath Sat, 15 Mar 2008 00:00:00 GMT Hi Kevin,I was in hopes that you, too, would respond to our message.  I did go back to zazu's information on transplant.  It was very helpful.  I can now answer your question regarding lab numbers that you asked when I responded to another message.  My husband's M-spike was 5.5 in June of 07, IgG was 7967, IgA was 103, IgM was 14 (low), and beta globulin was 1.2.  There is also a gamma globulin that was 506 (high).  His total protein was 12.3 at that time.  As of Feb 22, 08 his M-spike is 0.7, IgG is 870, IgA is 48 (low), IgM is 33 (low), beta globulin is 0.9, gamma globulin is 0.9, total protein is 6.1, and his last bone marrow in Jan. 08 was negative for cancer.  The Omaha doc wants to do the harvest in two weeks, not giving us quite enough time to get everything arranged at work.  My problem is that she plans to draw the blood for the tests the same day as she starts the chemo (cytoxin) for the harvest.  We both want to know if he is suitable for transplant BEFORE we begin the chemo.  With him, rare side effects are just about a given, if it's uncommon he'll have it.  We've learned this from past experience, but she is not interested in that fact.  He is geting along very well on the rev/dex.  We asked if he could do 1 more round of rev/dex before we do the harvest and she said no and gave us no reason why.  We wanted to delay the transplant until he retires in Aug of 08, as he has no sick leave left and could lose his insurance if he is off too long because of complications (and that's a given).  She said no to that also.  That is the reason we wanted information quickly.I have been unable to find information on the length of time rev/dex might continue to work.  The closest I came was an article in Myeloma Today that said these drugs (and others) could delay or replace the need for transplant.  My thinking (and I'm no doctor) is that we watch his counts and proceed if if things begin to change, but first we want the tests run to see if he can have the transplant.We left her office angry and more confused than before we went in.  She told us he would be off the rev, but said nothing about the dex and the huge amount of other meds he has to take for his other health issues.I'm going on and on.  Thanks again for responding.  Our thoughts are with you.  You are in our prayers.  Jan (WBT)          wevebeenthere Sat, 15 Mar 2008 00:00:00 GMT Good Morning Jan;"Also, what tests need to be done before hand to decide if he is in good enough health to go through a stem cell transplant?  Lung function?  Heart function?  Kidney function?" 'Prior to my transplant consideration I had all the above tests done and also a full skeletal x-ray. And just before the first serious chemo infusion I had 26 vials of blood taken!' You can add to the list a Bone Marrow Biopsy that I had forgotten last night.Take care;Kevin K. C. Sun, 16 Mar 2008 00:00:00 GMT Good Morning Jan;"As of Feb 22, 08 his M-spike is 0.7, IgG is 870, IgA is 48 (low), IgM is 33 (low), beta globulin is 0.9, gamma globulin is 0.9, total protein is 6.1, and his last bone marrow in Jan. 08 was negative for cancer."These are all very impressive numbers. It would appear to me that the present tx. plan he is on is working. Why not continue it?  "The Omaha doc wants to do the harvest in two weeks, not giving us quite enough time to get everything arranged at work... We asked if he could do 1 more round of rev/dex before we do the harvest and she said no and gave us no reason why.  We wanted to delay the transplant until he retires in Aug of 08, as he has no sick leave left and could lose his insurance if he is off too long because of complications (and that's a given).  She said no to that also." My Dr. in Philly wanted to perform my harvest in late November 07. I told him that I wanted to put this off until after the New Year. We discussed this for a time and we agreed upon the New Year as long as the "cocktail" I was on continued to lower my numbers and not cause any adverse effects. I also had financial issues which contributed to the later harvest date. I explained this also to the Dr. and perhaps this may have contributed to his agreement to the later date. Jan, keep in mind, YOU AND YOUR HUSBAND have more control over you tx. plan than they want you to know! Personally, I'd ask the Dr. that if he should lose his insurance benefits will she be willing to work for free? My follow up comment would be "then you can understand why we want this at a later date!""The closest I came was an article in Myeloma Today that said these drugs (and others) could delay or replace the need for transplant.  My thinking (and I'm no doctor) is that we watch his counts and proceed if if things begin to change, but first we want the tests run to see if he can have the transplant."All of these are valid and logical points made with informed, rational thinking. Perhaps you're confusing the good Doctor. "We left her office angry and more confused than before we went in."   Always remember, America's health care is BIG business! Which makes you the customer! Would you tolerate this Dr.'s attitude in any other business venture you encounter in your daily life? Of course not! Tell her this and ask if she mind if you consider following the present tx. plan while you seek other opinions? Take care;Kevin  K. C. Sun, 16 Mar 2008 00:00:00 GMT Hi GuysThis is changing the subject alittle. In 2003 I had tandem stem cell tranplants at UAMS.   The protocol now is much different.  So it would be difficult for me to help with your decision.  My question to you is  I am on Revlimid 23mg  for 2 cycles now and it is really beating me up.  Have any of you experienced flu-like symptoms, chills and extreme fatigue?  Or know of anyone?  What did they do to decrease the side effects?  I have been told my body should get use to them.  I am checking to see if anyone has had the same reaction.Thanks and God Bless Fish1 Sun, 16 Mar 2008 00:00:00 GMT Dear MMS,Thanks for the information.  Information that you have given to other cancer compass friends has helped us a lot, as has information from poppy/cath, K.C. and many others.  One thing I'd like to know, the Bence Jones proteins, does every myeloma patient have those or is that a different form of myeloma?  As for our Omaha doctor, we felt like we needed to strap her to the chair, as she kept getting up to leave and we kept trying to ask questions.  The fact that she didn't want to talk to us about new meds that are in trials made us feel like there was something in the labs that she wasn't telling us or that she didn't have the information about new meds to talk to us about them.  She was throwing things at us so fast that we didn't have time to think, then she was gone.  Don't know if you read Kevin's reply but it was a good one.  Check it out.Thanks again for the information.  Everything helps sort out this mess that MM can cause.  Jan (WBT)  wevebeenthere Sun, 16 Mar 2008 00:00:00 GMT Hi fish1,My husband has not had the symtoms that you are having, but due to other health issues, his revlimid (25mg) has been stopped for a few days to a week in the middle of the cycle.  He has had eight 21 day cycles and all but 2 have been inturpted for various reasons.  You might speak with your doctor about a lower dose of rev.  In speaking with people at the myeloma hotline, they said the dose is sometimes lowered to ease side effects.  I asked about lower doses beacuse my husband has blood clot issues.Are you sure that you haven't picked up a flu bug or something?  MM patients must be very careful about being around people.  Are you taking other meds besides rev?  If so, it could be one of those causing problems.  Hope this helps.  Jan (WBT)  wevebeenthere Sun, 16 Mar 2008 00:00:00 GMT Janthanks for getting back to me.i was wondering how do you get touch with the MM hotline Fish1 Sun, 16 Mar 2008 00:00:00 GMT Hi fish1,You can call 1-800-452-2873 (cure) or you can go online at www.myeloma.org.  They were able to answer a lot of questions for me and I am going to call them again soon.  If they don't know the answer right away, they will find it.  Also, have them send you Myeloma Today, a publication of IMF.  It has good information, too.Jan (WBT) wevebeenthere Sun, 16 Mar 2008 00:00:00 GMT Thanks JanI have contacted Celegene and  Rev Assist.  They were unable to help.  So I am hoping the MM hotline might have some info. Again thanks Fish1 Mon, 17 Mar 2008 00:00:00 GMT Dear Fish1,Don't know if this will help and maybe you are already doing this but, when my husband first started on rev they told us to be sure and eat a good meal in the evening, wait one to two hours and then take the rev.  He usually waits at least one hour after eating to take it.  He gets really sleepy and goes to bed.  The celgene people said it should be taken in that manner as you can then sleep off any side effects and/or they will bother you less.  Like you, I have been unable to find information regarding using lower doses of rev.  You would think that if you are having side effects, a lower dose would be worth a try.  If you find something, let me know.  Good luck.Jan  wevebeenthere Mon, 17 Mar 2008 00:00:00 GMT Hi Fish1~~  I've read your messages and I'm amazed that Celegene didn't recommend that you go down to 10mg.  I started on 50mg for one month, then dropped to 25mg for two months, then dropped down to 10mg and have been on 10 for about 17months -- 20 months on Revlimid. My blood work is now more 'normal' than it has been since I was first diagnosed five years ago and my paraprotein dropped from the high of 90 down to 8 and has basically stayed there all this time.  I see from my latest box of Revlimid that they are now producing a 5mg -- I'm going to talk with my oncologist and see what he thinks about reducing again -- only because I want it to keep working for as long as possible as I am not able to have any sort of transplant.  Sure, I am neutropenic so I do have to be very careful to avoid all bugs and germs, but so far I have been able to do it with only one exception - one bout of pneumonia which was caused by my becoming extremely overtired.  I agree with the writer who advised taking the Revlimid in the evening, her reasons were very sound.  If the Rev is working for you then your oncologist should be able to see how you are going by having bi-weekly blood tests. I was on bi-weekly blood tests for months until we were very sure that everything was stable. Now I have only one BIG blood test per month, including paraprotein and urinalysis.If you alter the dose then the doctor should be able to closely monitor exactly whats happening and make ongoing changes as necessary. I know that all MM patients are individuals and that not everything works the same for each of us, but I hope that you are able to get the same results that I have been having with Revlimid.  After having everything else and suffered real side effects and three near death experiences, I feel that Rev has been my saviour!  I pray that it goes on and on and on -- for me and anyone else who has found it to be beneficial.  Good luck Fish1, hopefully between IMF and Celegene you should have the best of heads working for you!!  Cath poppy/cath Tue, 18 Mar 2008 00:00:00 GMT To all who answered our request,I feel I must update my first message as we have gotten more information.  You were right Kevin, I needed to take charge and get some answeres.  Sent an e-mail to the doc and she was on the phone the next morning explaining all she didn't explain last week.  The reason she said that 4 to 5 months on rev was all, was not to take him off rev completely, but to stop it for 2 to 3 weeks to do the harvest.  The 4 or 5 month period is the best time to do the harvest of stem cells.  With D's health, we were not able to do the harvest at that time, so we should DO THE REQUIRED TESTS (she didn't explain that either last week) and if they think he can handle the transplant, do the harvest while his counts are good.  I guess there was a schedule mix up and they thought he was there for a routine check and did not realize they were to get things rolling for a possible transplant.  He will go back on the rev/dex after the tests and possible harvest.  She also said we can try and put the transplant off until he retires in August, if his counts hold.Another thing I forgot in the first message is that D is 58 years old, so age is not a problem yet.Jan wevebeenthere Tue, 18 Mar 2008 00:00:00 GMT Good Morning Jan;"The 4 or 5 month period is the best time to do the harvest of stem cells."I don't entirely agree with what is presented here. I was told by a pharmacist from a chemo drug manufacturer that you should get you M-spike down to .6 or below prior to a harvest. In fact, she told me that "anything above 1.0 is a waste of time." That 4-5 month window might be the norm, however, with your husband's low numbers I'd stay on the cocktail until either his numbers started to rise. He might be able to treat his MM with the meds. "...do the harvest while his counts are good."  Most definately! But he appears to be responding quite well to the present Tx. plan. His numbers may be able to go lower. Keep in mind, that initial harvest is the best he's going to get. After that, the cancer builds up a resistance to the treatment."He will go back on the rev/dex after the tests and possible harvest.  She also said we can try and put the transplant off until he retires in August, if his counts hold."Another point to keep in mind. Keep the harvest close to the transplant date. Even though the stem cells are stored in liquid nitrogen at mind-numbing temperatures there is still some loss to "freezer burn".Take Care;Kevin K. C. Wed, 26 Mar 2008 00:00:00 GMT 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  wevebeenthere Thu, 27 Mar 2008 00:00:00 GMT 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 Susan K. Fri, 28 Mar 2008 00:00:00 GMT 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 K. C. Fri, 28 Mar 2008 00:00:00 GMT 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 K. C. Fri, 28 Mar 2008 00:00:00 GMT 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 wevebeenthere Fri, 28 Mar 2008 00:00:00 GMT 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 bestSusie Susan K. Sat, 29 Mar 2008 00:00:00 GMT 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 Susan K. Mon, 31 Mar 2008 00:00:00 GMT 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 K. C. Tue, 01 Apr 2008 00:00:00 GMT 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 ThanksPraying everything is going well,Susie  Susan K. Tue, 01 Apr 2008 00:00:00 GMT 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 poppy/cath Tue, 13 May 2008 00:00:00 GMT  On 5/13/2008 poppy/cath wrote: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, CathHi Cath,First, thanks for the private reply.  I was feeling bad and as usual, your words made me feel better.  I found information on Rapamycin on the International Myeloma Workshop web site.  That site calls it "the mTOR inhibitor RAD001 (everolimus) that inhibits myeloma tumor growth".  The article says it has direct effects on tumor cell proliferation.  Another site, Ohio State University Comprehensive Cancer Center, has information  on Lenalidomide (Rev) and CCI-779 and says CCI-779 either kills the cancer cells or stops them from dividing and that CCI-779 may also stop the growth of cancer cells by blocking some of the enzymes needed for their growth.  I'm not sure, but when I put CCI-779 in Google, Rapamycin comes up.  Maybe RAD001 and CCI-779 are the same.  There is another med that I found in my papers called NPI-0052 that sounds interesting.  I also got a whole list of meds on the Multiple Myeloma Research Foundation site.  On that site I put "emerging therapies" into their search box.  It brought up 12 pages of meds in various stages of trials and the companies that make them.  Very interesting!  I printed them off and began looking them up.  Google usually has the best results.    I had to do some looking for the info you asked for.  I have taken a few weeks off from looking up meds as we are getting ready to head to Omaha on May 28th to see the oncologist and another hematologist.  If all is okay, my husband will begin prep for his stem cell harvest on May 31st.  If all goes well, they will harvest on June 8th or 9th.  We want to get the cells harvested for future use and also want to discuss other options, as he has had some bad reactions to meds, like you have had.  Hope this helps you.  If I find any more meds, I'll pass them on.  Take care!Jan  wevebeenthere Tue, 20 May 2008 00:00:00 GMT Thanks so much Jan!  I've printed out your response and will take it along tomorrow when I go to see my oncologist, just to quiz him about how much he has heard!  Good luck to you and your husband -- my thoughts and prayers will be with you for the weeks ahead and for the transplant!  I admire you for making this decision -- in a way I'm glad that I was told that I couldn't have a transplant -- knowing what one has to endure to have it done....but the results are so good that I guess that there really isn't a choice, is there??  Best wishes and let us know how its going.  Cheers, Cath poppy/cath Tue, 20 May 2008 00:00:00 GMT Hi Cath,I just wanted to ask, what did your oncologist have to say about the information that I passed on to you?  Did he shed some light on any of the meds or had he even heard of them?  I always like to hear a second opinion when possible.  Thanks!Jan wevebeenthere Sat, 24 May 2008 00:00:00 GMT