All On Rev/Dex, We Need Your Input Quickly

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 

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 

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) 

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

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

 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 MMS

On 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

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

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)     

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

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