All on rev/dex, we need your input quickly

Hi Guys

This 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

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) 

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) 

Jan

thanks for getting back to me.i was wondering how do you get touch with the MM hotline

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)

Thanks Jan

I have contacted Celegene and  Rev Assist.  They were unable to help.  So I am hoping the MM hotline might have some info. Again thanks

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

 

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

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

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