CancerCompass message board discussion started by zazu1234 on 3/23/2008 http://www.cancercompass.com/message-board/message/all,22270,0.htm Fri, 10 Oct 2008 00:00:00 GMT Fri, 10 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello. I can imagine the last thing you want to do is type. but I just wanted you to know I am thinking about you and praying you are doing ok. Best wishes. Ron zazu1234 Sun, 23 Mar 2008 00:00:00 GMT Good Morning Ron;"Hello. I can imagine the last thing you want to do is type. but I just wanted you to know I am thinking about you and praying you are doing ok."I appreciate your concern and don't mind at all replying. It's just this laptop keyboard is a little foreign to my fingertips. So I end up touching the wrong button and that only leads to my frustration! Case in point is my follow up to my original post "EVERYONE'S ASSISTANCE" don't know how I ended up with two replies. I only typed one!How is the progress on your brother going?I spoke to the Drs. about my SCT and they told me something quite interesting. Between the CYTOXAN and the MELPHALAN combined with the harvest, storage and thawing of my stem cells they claim that the cancer cells in my body, at present, are not even able to be counted. They are that low. Less than 1.% Apparently the freeze/thaw cycle also contributes to their death. Won't know for certain if all this is true until I have a BM Biopsy on day 60.Take Care;Kevin K. C. Wed, 26 Mar 2008 00:00:00 GMT I hope the very best for your recovery. "may god watch over you" What is it like to go through the "high dose" are you feeling "beat up" do the doctors think because you are down to low % that the cancer will have to take time to return ? do they think you should be on a low dose velcade maintanance therapy? do you have funky cramps ie, legs back ect.? I am so scared for my brother i know you have chromisome issues but is your disease  IgG cappa .lamda ?  Kevin did you have plasmablasts in the peripheral blood? Yale is thinking of a new approach using his collected stem cells(auto) and my sisters HLA. match together they say it is risky but his options are limited. sorry for the questions I know you like myself have educated ourselves well but I just wanted to know what the "high dose" is like !  he asks me what he will feel and i only know what i have studied. There is talk of being able to break the surface tension of a kappa protein which will shorten the life of a cell and allow for other cells to survive !!!! sounds radical but maybe soon !!!   best wishes  Ron zazu1234 Thu, 27 Mar 2008 00:00:00 GMT Good Morning Ron;I hope the very best for your recovery. "may God watch over you" I appreciate your support and words of kindness!What is it like to go through the "high dose" are you feeling "beat up" The CYTOXAN they gave me last month caused severe nausea, some diarhea and I lost all my hair except my eyebrows. The MELPHALAN given to me last Monday is only now starting to surface; mouth sores, (although the nurses warned me of these so I took exceptional care and have none) throat sores, which I am experiencing, some diarhea, only vomited once, and you'll lose your hair. Also your blood counts will fall. You will probably need transfusions.With both chemo's you'll feel tired and lethargic. Fight this! I make my bed every morning and refuse to get back into it until I retire for the night. Yes, I might sleep in the recliner, but I walk the halls often and see some of these other patients "vegetating" in their beds and swore I would not succumb to this! Get out of your room and walk, look out the windows, speak to the nursing staff on the ward. Stay active! It is difficult but keep your body (AND MIND) moving.do the doctors think because you are down to low % that the cancer will have to take time to return ? do they think you should be on a low dose velcade maintanance therapy? We've only slightly breached these topics. They want me to concentrate on the present. But believe me, those maintenance questions will be addressed within the next month. I didn't go through this ordeal to sit back and let cancer catch its breath. I may have been raised to be a gentleman, but while I have this cancer on its knees you can bet I'm going to kick it in the ribs!do you have funky cramps ie, legs back ect.? No. None at all.I am so scared for my brother i know you have chromisome issues but is your disease  IgG cappa .lamda ?  Kevin did you have plasmablasts in the peripheral blood? You're asking questions way above my pay grade. I was Dx. MM stage III B, no chance of recovery.Yale is thinking of a new approach using his collected stem cells(auto) and my sisters HLA. match together they say it is risky but his options are limited...sounds radical. I think this is fascinating. Keep in mind, Ron, ALL treatments before they become accepted and applied are RADICAL.I just wanted to know what the "high dose" is like !  he asks me what he will feel and i only know what i have studied. If the protocol is the same, they will place a port-a-cath in his neck with 2 or 3 tubes extending outside his body. The actual procedure took about 1 hr. From then on all his tests, I.V.'s etc. will take place through these ports. He won't even feel any needle pricks. The chemo will be administered through these ports. During the application he will feel nothing. Afterwards, he will feel what I have described above. Perhaps more side effects. That's up to him and his mental attitude. If your brother needs any further info feel free you ask. I hope I've answered all his concerns.Take care;Kevin  K. C. Thu, 27 Mar 2008 00:00:00 GMT Congrats Kevin!  I had my first auto trans 3 Feb.  Mine was done outpatient...though I ended up in the hosptial with a staph infection.  I have to agree with you, patients need to fight to stay active.  If they resort to staying in bed, before they know it, a month has gone by since they last walked or moved about....makes recovery that much harder.  My first transplant was with Melphalan.  The second however uses an intense cocktail of drugs each designed to provide mutual support to the other.  As far as I know, no one else is using this combo...hope it works.  You are so right, each person reacts to chemo differently.  I've had no problems at all outside of stomach cramps that lasted a long time.Will you be having a second transplant?  Though I went in to complete remission before my first, I'm on tap for my second in May.  Following the second will be a consolidation chemo treatment and 2 years of maintenance...Velcade, Dex, and Thal.  My doc is at the Huntsman Cancer Inst, but he came from Ark.  He believes in hitting myeloma hard and not letting up....sure hope I can take the beating.Best to you and your recovery.Doug UTboy Thu, 27 Mar 2008 00:00:00 GMT Good Evening Doug;  "I had my first auto trans 3 Feb...Though I went in to complete remission before my first, I'm on tap for my second in May."  Why are you having your second SCT so close to your first? I had read that there could be years before you enter remission."I have to agree with you, patients need to fight to stay active."Yes we do! Cancer isn't for sissies, and neither are the treatments! "The second however uses an intense cocktail of drugs each designed to provide mutual support to the other.  As far as I know, no one else is using this combo...hope it works." I trust you'll come back and inform us of this new treatment. We have to continue to educate one another so that we can teach these Drs. "Will you be having a second transplant?"  I am planning on one as I have chromo-13 deletion. But there is a trial out there with MATAMUMIBIB (excuse the spelling, I'm away from my notes) which I was looking into."Velcade, Dex, and Thal."  Be careful of the THAL. I have heard there can be long term, NON-REVERSIBLE nerve problems."sure hope I can take the beating."You just ask your extended family here at CC for some positive energy directed your way. It certainly eased my discomfort and helped in my recovery!"Best to you and your recovery."Thank you and Godspeed in yours.Take care;Kevin  K. C. Thu, 27 Mar 2008 00:00:00 GMT My doctor came from the university or Ark.   He believes you have to hit the cancer hard and fast.  The quick turn around for the second transplant is part of that belief...which he developed in Ark.  As for the Thal, I will be watching for indications of nerve damage.  I take  fish oil to help counter the Thal and that seems to work for now.The chemo used prior to the second transplant includes:BCNU, Melphalan, Velcade, Gemcitabine, and DexamethasoneBest of luck to allDoug UTboy Fri, 28 Mar 2008 00:00:00 GMT Hello Kevin, The 31st is the day for my brothers SCT. We have been informed that the double-tandem transplant will not be done. The doctors know his cancer is so aggressive and certain indicators that make GVHD too high of a risk. His beta2 micro. was extreamly high and between chromisome deletions,iGg kappa lamda disease free plasmablasts and so on he will have a difficult time. For my brother ,he was DX in september last year and the doctors know it will be very difficult to stop the progression.  The cytoxen and nupigen did nothing to his hair or his upper GI tract. The SCT is like turning the clock back on the myeloma but it will come back. The most important  thing to do is keep a positive thought about graft verses myeloma effect because in some cases this happens and a much longer term of remission occurs . The doctors do not know why GVME happens in some and not others. This is the main reason why we use a HLA match. There is so much to be learned about Myeloma and we still know so little. I will keep him motivated as i too believe that laying bed is not a good thing either. You have a good attitude and you have a strong positive mindset. We will prey that your myeloma never returns. Best wishes for a speedy recovery   Ron zazu1234 Sat, 29 Mar 2008 00:00:00 GMT Good Morning Ron; The SCT is like turning the clock back on the myeloma but it will come back. The name of the game for now is buying time. I can't tell you the number of people who have told me that the medical field is sooooooo close to finding a cure for this horrific disease there's that many. These people are working real hard to make this a treatable disease and I'm going to do my part by hanging around and signing up for the trials.What is your brother's name so that I can keep him in my prayers on Monday? Also, is going to be hooked up to that super-duper machine you had described earlier?Take care;Kevin K. C. Sat, 29 Mar 2008 00:00:00 GMT  On 3/29/2008 K. C. wrote:Good Morning Ron; The SCT is like turning the clock back on the myeloma but it will come back. The name of the game for now is buying time. I can't tell you the number of people who have told me that the medical field is sooooooo close to finding a cure for this horrific disease there's that many. These people are working real hard to make this a treatable disease and I'm going to do my part by hanging around and signing up for the trials.What is your brother's name so that I can keep him in my prayers on Monday? Also, isMessage board: Reply to a Messager?Take care;Kevin  zazu1234 Sat, 29 Mar 2008 00:00:00 GMT yes they will use the computer to introduce the stem cells and so on. I have heard of some things that are in the process such as drugs to eliminate the possalility of re-introducing the myeloma back to a patient during re-infusion and some type of  chemotheroputic  aid that will kill off more or all the cancer in the patient prior to reinfusion. i hear these things from the doctors at Yale. The doc. will take all the time needed to answer the barrage of questions i have for him. He asks if i want to become a oncologist  LOL my answer is NO WAY.  I am not smart enough.!!!!! You have to pretty sharp to be a high level oncologist but I asked him if he wanted to be a realestate developer  he laughed. also if you look at my income it is like his except his has a few more zeros after the number LOL.    OK here is my point.... A auto mechanic said to his doctor "i dont know why doctors get so much money for their services we do the same things, A mechanic removes the intake , the valves the pistons and rebuilds entire engines, just like a doctor transplants hearts,repairs broken pipes  and so on. the doctor replied yes you are right but try to rebuild the engine with it running !!         the body is an amazing machine. My brother is charlie we called him zazu when we were growing up thank you for including him in your prayers as you are in ours  very sincerely Ron zazu1234 Sat, 29 Mar 2008 00:00:00 GMT