Fasting may improve chemotherapy

I remember your process now. 21 months on Rev is amazing. My wife is considering a transplant once the Velcade plateaus, but is still not 100% sure yet. It will be something that she will have to discuss in depth with her doctor. But ... whether she has it or not I think Rev will be her next step. How much Dex do you take with it?

Thanks and take care.

Craig 

Hi Craig -- I do not take any Dex with my Revlimid!  I ended up having two perforated bowels - both requiring surgery - after taking high doses of Dex early on in my chemo treatments.  As a result I have not had any steriods in four years.  I know that the research seems to say that Rev in conjunction with Dex works best, but for me, the Revlimid on its own has done wonders!  My paraprotein has stayed at 8 (down from 90) for most of the 21 months.  It took about three months to get my Revlimid level sorted out.  We started at 50mg, then dropped to 25mg, then went down to 10mg in the third month and have remained on 10mg ever since.  The only other medications I take are 5mg Norvasc, 300mg gabapentin (for neuropathy from thalidomide), cartia, and ordourless garlic tablets!  So far so good!!

Good luck to your wife -- I hope that she has the same success with Revlimid that I have had, because for me it truly has been a wonder drug and is whats kept me alive!  She is lucky that she has the two options left - transplant and Revlimid - because I really don't know what I will turn to when the Revlimid no longer works for me.  Not to worry, I'll keep on researching and hopefully something will turn up!!  Best wishes to you both, Cath

Thank you very, very much for this wonderful information. The Revlimid really has worked like a miracle for you .. especially without the Dex. My wife is very frightened of having the auto-transplant and would rather go to another medication like Revlimid, but I'm not sure if that is the best option because not everyone will have the great response you had. It might be better if she does the transplant and keeps the Revlimid in her back pocket as the next medication if the MM comes back. Very tough decision for her. Any suggestions you might have in that regard would be much appreciated. :-)

Take care.

Craig

Good Evening Craig;

"My wife is very frightened of having the auto-transplant and would rather go to another medication like Revlimid, but I'm not sure if that is the best option because not everyone will have the great response you had. It might be better if she does the transplant and keeps the Revlimid in her back pocket as the next medication if the MM comes back. Very tough decision for her. Any suggestions you might have in that regard would be much appreciated."

While the final decision lies with you and your wife I will offer my advice as only further information to help you both make a more informed decision. Believe me when I tell you that I am in awe of your knowledge and the information you have provided to this board!

The cocktail I was on included Vel/Rev/Dex and it lowered my M spike to 1.031. Not what I wanted, but I was starting to plateau and also developed some slight vision problems. So for me the time was right.

Always keep in mind, that initial harvest is the best you're going to get. Any subsequent harvests will be tainted with cancer cells that have built up an immunity to the meds. You must get your numbers down prior to the virgin harvest! I don't know your wife's age, but the normal harvest is enough for 2 transplants, have them take more if her body can handle it and she plans on being around for awhile. (My Dr. wanted 2 million stem cells for each transplant. We took 7.6 million! I have enough for 1 additional transplant.)

The harvest itself is just plain boring. They place a large needle in each arm and remove blood from one arm and return through the other. Very similiar to dialysis. You just lay there and watch T.V. but you can't bend your arms for obvious reasons. Depending on the individual it takes about 3 hours. If you don't produce enough stems, you come back the next day. The days of taking the stems directly from the bones are history. Thank God!

The transplant was neat to watch, but in retrospect, what a let down! 20 minutes and it's over. No pain.

I would respectfully suggest that your wife try the above cocktail to lower her numbers and when she plateaus then have the harvest. But take an exra unit out cause I firmly believe that we are very close to managing this disease!

However, I recall you and her have had wonderful progress with your alternative treatments. Have you tried this FUCOIDAN? And have you done any research on the Measles virus being used to fight MM?

Should either of you need any further information don't hesitate to ask!

Take care;

Kevin

After all that I've read regarding the transplant I must admit that I think the same way as your wife Craig.  I would use the Revlimid first -- after all, she could become even better than she has been and therefore she'd be even stronger if she decided to go ahead with the transplant.  I wouldn't want to subject myself to the trauma of the transplant unless I was sure that there was no other way.  Who knows -- she's had such a good response to the last drug, there is no reason to think that it won't be the same with the Revlimid.  I believe the trick is to go in on a low dose -- no more that 10mg x 21 days.  That way she should avoid any side effects.  I noticed on my last prescription that they are now putting Revlimid out in 5mg doses, but I haven't heard of anyone taking them at this strength.  I went the other way, starting high and dropping lower every month -- but its not really logical when you think about it.  Much better to start lower and increase as you need it.  It certainly would be worth talking to your doctor about it.  My best wishes are with you both -- Cath

Wow. Thanks a lot Kevin. We are Americans living in Canada so I'm not sure anymore what the imperial v. metric equivalence is, but her Mono Peak has gone from 90 to 20 on the Velcade. The reduction has slowed over the past 2 months, so her doctor is beginning to plan for the stem cell harvest and transplant. Not sure if a Rev/Dex or triple combo is available in Canada prior to a transplant or not, but we'll ask. Also, your information about harvesting 2 transplants worth of cells is very important. My wife is keeping alternative supplements to a minimum during the Velcade treatment to see how it does on its own, but maybe its time to kick in some of the other arsenal again. I'll keep you posted on her decisions and will also forward any questions we might have along the way because you're the go-to guy!

Thanks again. :-)

Craig 

Thanks Cath! Your input combined with Kevin's really helps looking at the options easier! We'll bring up the Revlimid option at her next appointment.

Take care.

Craig 

Good Evening Craig;

"The reduction has slowed over the past 2 months, so her doctor is beginning to plan for the stem cell harvest and transplant."

Also, keep in mind that approx. 2-3 weeks prior to the harvest she will be off ALL chemo and steroids.

To me, this gives the cancer a chance to catch its breath and recover somewhat. But the Drs. want the cells and body strong for the harvest. Unfortunately, this also includes the bad cells too.

Additionally, the info Cath has provided you gives you both another option. Possibly starting out slow and increasing the dosage.

Take care;

Kevin