CancerCompass message board discussion started by Carl31 on 11/22/2005 http://www.cancercompass.com/message-board/message/all,3557,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, This is my fist time posting here. Please let me share some important info. that does not seem to be widely discussed here. The number one treatment center for multiple myeloma is the Myloema Institute at the University of Arkansas Medical Sciences (UAMS) They have the best statistics on longest remission times and highest survival rates and people come from around the world for treatment there. I have MM with Kappa Light Chain Disease and Kidney failure and I am on Dialasys. I have been in complete remission for 2 yrs. I was originally trated with VAD. After my fourth round I had a bad case of pnemonia and nearly died. After a month in a coma I came back and later was treated with two stem cell transplants at UAMS. Living with Kidney failure kind of sucks but I am greatfull to be here and I have good hopes for a kidney transplant. Let me offer some basic tips for anyone new. 1. If you are a light or thin or even average person, make yourself gain 15 pounds before each major round of VAD, before your collection and befoe each transplant as you will most likely loose that much each time and you will be stronger if you are heavier. 2. Attitude and the most positive outlook makes a lot of difference in your outcome. 3. Pray. If you have not accepted Jesus, do so immidiately. Only God can cure you. Doctors are only instruments of God's hands. 4. IF BP is a problem then learn to manage your own BP through your own trial and error. Make the doc let you try various bp meds and experiment a little at a time with the dosages and take your BP every couple hrs until you get a good result. A doctor can not manage your BP only you can. Sorry about the type O's, I still have quite a bit of hand tremors. Best of luck to everyone. Carl31 Tue, 22 Nov 2005 00:00:00 GMT Hi Carl31, This is my first time to respond. My husband was diagnosed in June of this year, he was 42 at the time, now 43. He had 15 rounds of radiation, lost 65lbs.(he started out at 6' weighing 218) he dropped down to 5'10" weighing 155lbs. My husband was the Youth Pastor at our church, professional bodybuilder, and worked with a team of athletes that do feats of strength to preach the gospel. Quite a shock to be so thin! We came across some info. on a product called: AVEMAR, it is fermented wheat germ, you can only get it from 1 place in the US, it just got FDA approval 4 months ago for a diet supplement. Ave' has done wonders, along with prayer. My husband has been on it for 2 months and 3 weeks, he started gaining weight immediately and now weighs 185lbs. His Dr. has been amazed, not only that, but even more amazing, his WBC has been normal every time we do bloodwork, he has not had any infections. Ave' has been very effective in Clinica Trials on all types of cancer including MM. My husband is on Velcade, at this time. He was on Thalidomide for 3.5 weeks, but refracted. Tomorrow is the 8th day of his first treament cycle. Have you done Velcade? I would like any info. you may have. I appreciate your honesty and your commitment to Jesus, He's the only way to go!! Not only do I highly recommend Ave', but we also take communion every night, that is how we stay strong. If you would like info. on Ave' I'll be happy to pass it along. Look forward to hearing from you, God Bless. Val Pastorval Sun, 04 Dec 2005 00:00:00 GMT Hello i'm on my third cycle of chemo and it seems that disease has come back again. I would like more info regard AVEMAR; how is it taken and is it costly? Blackicz Mon, 05 Dec 2005 00:00:00 GMT Hi, I am sorry it has taken me so long to respond. The Harmony Co. is the only place (in the US) to get Ave as far as I know,their phone # is 1-800-422-5518, email them at:ambiosci@optonline.net. They are out of NJ and will 3 day ship your product cold. Monday I ordered a 3 month supply it cost $404.88 which included shipping. It comes in individual packets of 30 to a box, you mix it in 8oz. of cold fluid, my husband prefers water, says it tastes like dirt but it's worth it because it works. I hope and pray the best for you. Pastorval Thu, 08 Dec 2005 00:00:00 GMT Hi ,Pastorval Thank you for your response and I am glad to hear your husband is doing better. I am somewhat suprised to hear that he was initially treated with radiation for MM as I have not heard of others having that for the fisrt treatment option. Was there some pecific reason for this? Thanks for the info on Avemar. I think I may try it if and when my cancer becomes aggressive again but probably not right away. It is somewhat expensive and I am currently in complete remission. I can imagine how hard it was for your husband to loose all that weight and muscle mass. While not a body builder, I also was very athletic before getting sick. I trained with weights and various forms of karate from the time I was 16 until I was diagnosed at 42 without ever taking a break. I was about 175 with virtually zero body fat. After being in a coma for only one month, I lost over 50 lbs and I lost an entire lifetime of strength and muscle. I have been ablle to re-build some of it over the past few months since I finished treatment. I did so just by getting a lot of high quality protien and by forcing my self to do light workouts as much as I possibly can. My strenghth and energy vary from week to week and so my ability to exercise varies. Also, I am completely unable to do anything for 8-9 days of each dex cycle I have not tried Velcade but I think you have to meet certain conditions to get it. I have been told that only people who have used at least two other regular treatment options with no success can get Velcade. Is that your understanding as well? How did you get it? I have been on Thalidimide on and off for three yrs (mostly on). I am able to tolerate it well. It causes some hand tremors and numbness but neither are unbearable. What hapened to your husband when taking the thal? My biggest problem lately is that my doc would like me to continue both Thal and regular cycles of dex indefinitely. I have had increasing difficulty tolerating the dex cycles to the point where I can not toloerate it at all on either of the two tested and recomended schedules. (Those are either 40mg X 4 days every 3 weeks or 20 mg X 4 days every 2 weeks). My local doc is thinking of either putting me on a reduced dex schedule or cutting it out completely at least as long as I remain in remission . I am going back to UAMS next week for follow up testing and I will get their recomendation as a second opinion and make a decision from there. I know that comming off the dex is probaly going to shorten my remission time to some degree, but I am not aware of any study that can put that into a specific likely percentage. Staying on the dex cycles has become so miserable that I would rather die quicker and at least be somewhat funtional for a while before I go. I have not heard of anyone else who has had so much trouble taking dex so I am not sure why I am. I wish your husband the very best and I sincerely hope that his recent upward trend will continue for a long, long time to come. Good luck to you! Carl31 Fri, 09 Dec 2005 00:00:00 GMT Hi,Pastorval Thank you for your response and I am glad to hear your husband is doing better. I am somewhat suprised to hear that he was initially treated with radiation for MM as I have not heard of others having that for the fisrt treatment option. Was there some specific reason for this? Thanks for the info on Avemar. I think I may try it if and when my cancer becomes aggressive again but probably not right away. It is somewhat expensive and I am currently in complete remission. I can imagine how hard it was for your husband to loose all that weight and muscle mass. While not a body builder, I also was very athletic before getting sick. I trained with weights and various forms of karate from the time I was 16 until I was diagnosed at 42 without ever taking a break. I was about 175 with virtually zero body fat. After being in a coma for only one month, I lost over 50 lbs and I lost an entire lifetime of strength and muscle. I have been ablle to re-build some of it over the past few months since I finished treatment. I did so just by getting a lot of high quality protien and by forcing my self to do light workouts as much as I possibly can. My strenghth and energy vary from week to week and so my ability to exercise varies. Also, I am completely unable to do anything for 8-9 days of each dex cycle. I have not tried Velcade but I think you have to meet certain conditions to get it. I have been told that only people who have used at least two other regular treatment options with no success can get Velcade. Is that your understanding as well? How did you get it? I have been on Thalidimide on and off for three yrs (mostly on). I am able to tolerate it well. It causes some hand tremors and numbness but neither are unbearable. What hapened to your husband when taking the thal? My biggest problem lately is that my doc would like me to continue both Thal and regular cycles of dex indefinitely. I have had increasing difficulty tolerating the dex cycles to the point where I can not toloerate it at all on either of the two tested and recomended schedules. (Those are either 40mg X 4 days every 3 weeks or 20 mg X 4 days every 2 weeks). My local doc is thinking of either putting me on a reduced dex schedule or cutting it out completely at least as long as I remain in remission . I am going back to UAMS next week for follow up testing and I will get their recomendation as a second opinion and make a decision from there. I know that comming off the dex is probaly going to shorten my remission time to some degree, but I am not aware of any study that can put that into a specific likely percentage. Staying on the dex cycles has become so miserable that I would rather die quicker and at least be somewhat funtional for a while before I go. I have not heard of anyone else who has had so much trouble taking dex so I am not sure why I am. I wish your husband the very best and I sincerely hope that his recent upward trend will continue for a long, long time to come. Good luck to you and God bless ! Carl31 Fri, 09 Dec 2005 00:00:00 GMT Hi, My name is Brenda. My husband is 49 years old and he had radiation and a stem cell transplant over one year and four momnth we are now in remission. He was VADD and thilmide but the thilmide made him sick so they put him on velcade that was enought to get us the transplan. He was in stage 3B and we have been in remission for 5 months now. Hopefully we will be there longer. He is sick all the time. Today is our 23 anniversity and here I sit on the computer email you all and he is in there sleeping. Today on dialzysis they said he was getting an infection in his lines so they gave him vanco antibotic. He has been complaining that his joints are bones are sore just like when all this started.I am giving him more morphine and oxycontin. Sould I be concerened? We go see one of our cander Dr's tomorrow but we won't see the one that gave him the . Don is worried about this stuff coming back so we are going to celebrate Christmas with our 15 year old son and enjoy it. We even went all out and put up everyone of my Christmas decorations including lights outside. I tease my husband and tell him I need to run and get more stuff. I don't pray every night because the minute my head hits the pillow and I start to pray I end up falling alsleep. But I do know that the good Lord is walking with me and my family and I am thankful for everyday we have him with us. Even if I am here on the computer and he is in there sleeping. I have been on this computer trying to figure out this medicare plan D stuff talk about confusing. I agree that the only one who cures is the Lord and what ever happens to my husband rather he lives or passes he wins. If he lives he has me and our son to love him but if he passes he will be in a better place with the Lord and his family that has already passes. May God bless us all. Brenda Lovedone Wed, 14 Dec 2005 00:00:00 GMT I am a 7 yr. survivor of Myeloma. I was 39 when diagnosed. I did not stay at a local doctor as they wanted to use a chemo -that later I found out would have hurt my stem cells! I went up ( 6hrs away) to the Mayo Clinic in Rochester,MN. They have a group of Myeloma specialist that look at the drug options as well as Transplants. I harvested 10million stem cells and was on Thalid/Dex for 4 months before the harvest.  I then froze my stem cells and did not have a transplant. I was drug/chemo free for 3 yrs and then got back on the Thalid/dex for 9 months. I then started on Juice plus products {the red, the green & the purple capsules), Omega 3#, Resveratrol tablets, and a glass of red wine a night! My cancer(Iggs) responded!!! I have been doing this for the last 3 yrs- again DRUG/CHEMO  FREE!! Many doctors think I should have been on drugs- so I stuck to my Mayo Doctors- who watch me closely in amazement-but I am living a healthy chemo free life. Why should I put those hard drugs in my body if I don't need them- I will/have used them only when the numbers get a little high. I have no bone or kidney damage. Out of 7yrs only a total of 13 months on chemo/drugs. I hope this can help others- Look for a Doctor that will fit what you feel comfortable doing in your treatments. Remember a Doctor that says it is his way or the HWY- well get on the highway and find a better open minded specialist in your cancer treatments. We all have options that will help in our survival! Kathy Kkeating Thu, 21 Feb 2008 00:00:00 GMT