Support for Multiple Myeloma

karen08

Jim L. said:

Mulitpla myloma
Probably got the above spelled wrong. I have had this cancer for at least5 years.
took thalamide for 2 years and was off this for a year and did good till couple of months ago. My blood counts started falling. My white cell counts are really low and my hemoglobin counts are really down. As a result of the above I have had probably had at least 12 blood transfusions in the last 3 months. TheDr. has been trying different steriods om me and nothing is working right. I have to go in the hospital in the next day or two to have a bone marrow biopsy and another transfusion. By the way as a result of taking thalaomide I have lost much of the feeling in my feet and my hands feel like have sandpaper on them. Another than that I feel pretty good as long as the blood perks me back up. The Dr. says as soon as the results are back we will have to make a decision as to what we do net. Would be interested in your reaction to the above. I am a w/m 69 years old .
Thanks Jim L.

MM
Jim... how are you doing i am 52 yr young lady who was dx nov 08.. i have not had any blood transfusion,, but i been on velcade dex revlimid and now on doxil velcade dex
only problem now i have a doxil rash,, see i want to get a stem cell transplant. so i hd to come off relimid cause it can make it hard to get stem cell... and the doxil worked after 4rounds no protein in my urine..i am a kampa light chain iam stage 1a my last bmb was at 5% last nov 09... i been in chemo for 1 yr,,,,as for you feet and hand i have the same problem from velcade.. not fun,,,you have to decide what you want.. stay on meds or go for a stem cell transplant...i on this train and not getting off till i am done and in remission,,, i wish you well please let me know how you are doing...
karen

karen08

Orange007 said:

Wow!
I am 58 and did my second stem cell transplant May of 09. Lately my platelets have been dropping, sometimes to dangerous levels, but we are treating that. So far the mm is in remission. I certainly am not the same person I used to be, and it's hard to cope with that. --- I don't know if you're a Christian person, but let me tell you part of my story and this may help you:

Before I get on, why are all of you people giving mm respect with capitol letters?
It doesn't respect you.

I was diagnosed with mm, early in 2007 after a routine physical. I have had lower back pain most of my life and even a compression fracture in L1 after falling off a ladder at work. I had driven truck for 30 years when the doctor told me she found some abnormal spikes in my protein levels. She then referred me to a local Oncologist, and then to specialist is Pittsburgh. At first he thought it might be MGUS and then the bone marrow test showed positive for mm. I was devastated and thought I would die any day, regretting not seeing my sweet Terry, sons, Rob and Mike, and grandson Jonas anymore. I was as low as I could get. Then I decided not to take this lying down. You can give in, or you can fight. I was never one to give in. Even my wife, Terry, said I was a rebel.

For the months that followed I was put on a regiment of some very serious meds.
The steroids were the worst and caused permanent nerve damage in my hands and feet, mostly my feet. I had a port put in and the home health nurse would come almost everyday to flush the lines and take vitals. Soon I learned to flush the lines myself. At that time I was gearing up for the asphrisis, when you donate your own stem cells and put them into deep freeze to be injected after chemo. The nurse came to our home and gave me a shot of neulasta, to move the stem cells into the blood stream. I knew there would be another shot the next morning; it was a two phase thing. Some paperwork described it as perhaps having some bone pain, much like you do when you have the flu, and would probably start at the hip and pelvis area. BELIEVE ME, IT WAS NOTHING LIKE THAT. By mid-afternoon the pain started to come in pulses, getting ever stronger to the point I could hardly stand it. On a pain level between 1 and 10, it was a 12. Mind you I can take a lot and have a high resistance to meds, but this was unreal. At first I sat in a chair and gazed thru the TV, trying to take my mind off of it. I struggled and stayed up all night, finally nodding off around 5:30AM. Morning came and I knew my wife would be off to work around 6:30, and the home health nurse would visit shortly after that.

I got cleaned up a little and had some tea. The nurse called and said she was on her way. As I sat there, at the kitchen table, I pulled out our laptop to take my mind off of the second phase of paid that was soon to come. They said it start around my shoulders this time. NOW THIS IS THE IMPORTANT PART: I sat there scanning thru web pages of Christian sites looking for a medallion I wanted to get my wife. On one of them were the lot of pendants and medallions, but along the side of the page was a list of patron saints and what causes they helped. Mind you, I have been Catholic all of my life, but never put much faith in the saints, thinking it more-or-less something man had done and not God. While scrolling down thru the saints, I found the name Lazioso Peregrine. I read about his story which intrigued me. He wasn’t even Catholic at first and was very rebellious. And then I softly, out load, I read the prayers and novena that followed. Immediately the pain left my shoulders, as if someone had turned off a light switch. It was not something of the mind or brain, but there was divine intervention thru the help of St. Peregrine. You see, I wasn’t looking for him, HE WAS LOOKING FOR ME! I was merely looking for some jewelry for my wife, and he found me. He took away my pain and suffering, and intervened for me to God, as a close friend helps another.

Dave

mm
dave i am catholic too i wish i get a medallion of lazioso peregrine,,
i see you had 2 stem cell.. i like to talk to you or by email i was dx nov 08 at the age of 51.. if you look i posted about me.. i am scare.. i am now on doxil velcade dex have done 4 rounds.. it doing it job my last bmb nov 09 was at 5 %..
here my email address bkdavies@aol.com please contact me,, or anyone else who reads this
thank

cedarcraw

Orange007 said:

Wow!
I am 58 and did my second stem cell transplant May of 09. Lately my platelets have been dropping, sometimes to dangerous levels, but we are treating that. So far the mm is in remission. I certainly am not the same person I used to be, and it's hard to cope with that. --- I don't know if you're a Christian person, but let me tell you part of my story and this may help you:

Before I get on, why are all of you people giving mm respect with capitol letters?
It doesn't respect you.

I was diagnosed with mm, early in 2007 after a routine physical. I have had lower back pain most of my life and even a compression fracture in L1 after falling off a ladder at work. I had driven truck for 30 years when the doctor told me she found some abnormal spikes in my protein levels. She then referred me to a local Oncologist, and then to specialist is Pittsburgh. At first he thought it might be MGUS and then the bone marrow test showed positive for mm. I was devastated and thought I would die any day, regretting not seeing my sweet Terry, sons, Rob and Mike, and grandson Jonas anymore. I was as low as I could get. Then I decided not to take this lying down. You can give in, or you can fight. I was never one to give in. Even my wife, Terry, said I was a rebel.

For the months that followed I was put on a regiment of some very serious meds.
The steroids were the worst and caused permanent nerve damage in my hands and feet, mostly my feet. I had a port put in and the home health nurse would come almost everyday to flush the lines and take vitals. Soon I learned to flush the lines myself. At that time I was gearing up for the asphrisis, when you donate your own stem cells and put them into deep freeze to be injected after chemo. The nurse came to our home and gave me a shot of neulasta, to move the stem cells into the blood stream. I knew there would be another shot the next morning; it was a two phase thing. Some paperwork described it as perhaps having some bone pain, much like you do when you have the flu, and would probably start at the hip and pelvis area. BELIEVE ME, IT WAS NOTHING LIKE THAT. By mid-afternoon the pain started to come in pulses, getting ever stronger to the point I could hardly stand it. On a pain level between 1 and 10, it was a 12. Mind you I can take a lot and have a high resistance to meds, but this was unreal. At first I sat in a chair and gazed thru the TV, trying to take my mind off of it. I struggled and stayed up all night, finally nodding off around 5:30AM. Morning came and I knew my wife would be off to work around 6:30, and the home health nurse would visit shortly after that.

I got cleaned up a little and had some tea. The nurse called and said she was on her way. As I sat there, at the kitchen table, I pulled out our laptop to take my mind off of the second phase of paid that was soon to come. They said it start around my shoulders this time. NOW THIS IS THE IMPORTANT PART: I sat there scanning thru web pages of Christian sites looking for a medallion I wanted to get my wife. On one of them were the lot of pendants and medallions, but along the side of the page was a list of patron saints and what causes they helped. Mind you, I have been Catholic all of my life, but never put much faith in the saints, thinking it more-or-less something man had done and not God. While scrolling down thru the saints, I found the name Lazioso Peregrine. I read about his story which intrigued me. He wasn’t even Catholic at first and was very rebellious. And then I softly, out load, I read the prayers and novena that followed. Immediately the pain left my shoulders, as if someone had turned off a light switch. It was not something of the mind or brain, but there was divine intervention thru the help of St. Peregrine. You see, I wasn’t looking for him, HE WAS LOOKING FOR ME! I was merely looking for some jewelry for my wife, and he found me. He took away my pain and suffering, and intervened for me to God, as a close friend helps another.

Dave

mm
I really don't understand your story here . Could you please explain it better. Yes I am a Christain.

caregiverboomer

karen08 said:

MM
Jim... how are you doing i am 52 yr young lady who was dx nov 08.. i have not had any blood transfusion,, but i been on velcade dex revlimid and now on doxil velcade dex
only problem now i have a doxil rash,, see i want to get a stem cell transplant. so i hd to come off relimid cause it can make it hard to get stem cell... and the doxil worked after 4rounds no protein in my urine..i am a kampa light chain iam stage 1a my last bmb was at 5% last nov 09... i been in chemo for 1 yr,,,,as for you feet and hand i have the same problem from velcade.. not fun,,,you have to decide what you want.. stay on meds or go for a stem cell transplant...i on this train and not getting off till i am done and in remission,,, i wish you well please let me know how you are doing...
karen

second guessing treatments
I am a 51 yr old woman who lost her 53 yr old husband last year to mm. I fell off the roof through a pool cage in 2004 and he caught me. When I dropped down in his arms he fell to the ground and could not get up. That was when they found his first single cell plasmacytoma. He had kypoplasty and thalamide w/dex and 38 radiation treatments. Then the next year he went into renal failure. He had dialysis 3 days a week for 4 hrs @ a time. He seemed to be in remission for about a year and a half. From taking the high dose steroids he picked up a infection in his brain called nocardia. He had to have brain surgery to remove that and take antibiotics for one year. He seemed very healthy except for a bit of tiredness from the dialysis. In december of 2007 he started getting bad pain in his shoulder blade. He went for a MRI and we were told he had another plasmacytoma and he needed to have radiation again and start on the velcade. He did the treatments and the drs. recommended he proceed with a stem cell transplant. We were able to harvest after 3 attempts and finally had enough stem cells harvested to proceed. In July we went into the hospital for a transplant expecting to be there for 6 weeks and returning home. Things went terribly wrong and his transplant did not take and he ended up in the ICU and after 90 days in the hospital his battle ended. Not from the cancer but from the procedure. He contracted Mersa, c-diff and other hospital born infections due to his diminished immune system. My point is not to discourage anyone from trying every thing possible to stay alive I just want others to know that the doctors tell you it's no big deal to have a transplant and that you will be in and back home in a matter of weeks. Do your research. Meds they have out there today maybe the better alternative. I have been second guessing my decision of honoring my husbands DNR in the hospital but I can't change a thing now. My prayers are with you and want to let you know that the more you understand and ask questions the better you will feel about your decisions. God bless

kjw1947

Orange007 said:

Wow!
I am 58 and did my second stem cell transplant May of 09. Lately my platelets have been dropping, sometimes to dangerous levels, but we are treating that. So far the mm is in remission. I certainly am not the same person I used to be, and it's hard to cope with that. --- I don't know if you're a Christian person, but let me tell you part of my story and this may help you:

Before I get on, why are all of you people giving mm respect with capitol letters?
It doesn't respect you.

I was diagnosed with mm, early in 2007 after a routine physical. I have had lower back pain most of my life and even a compression fracture in L1 after falling off a ladder at work. I had driven truck for 30 years when the doctor told me she found some abnormal spikes in my protein levels. She then referred me to a local Oncologist, and then to specialist is Pittsburgh. At first he thought it might be MGUS and then the bone marrow test showed positive for mm. I was devastated and thought I would die any day, regretting not seeing my sweet Terry, sons, Rob and Mike, and grandson Jonas anymore. I was as low as I could get. Then I decided not to take this lying down. You can give in, or you can fight. I was never one to give in. Even my wife, Terry, said I was a rebel.

For the months that followed I was put on a regiment of some very serious meds.
The steroids were the worst and caused permanent nerve damage in my hands and feet, mostly my feet. I had a port put in and the home health nurse would come almost everyday to flush the lines and take vitals. Soon I learned to flush the lines myself. At that time I was gearing up for the asphrisis, when you donate your own stem cells and put them into deep freeze to be injected after chemo. The nurse came to our home and gave me a shot of neulasta, to move the stem cells into the blood stream. I knew there would be another shot the next morning; it was a two phase thing. Some paperwork described it as perhaps having some bone pain, much like you do when you have the flu, and would probably start at the hip and pelvis area. BELIEVE ME, IT WAS NOTHING LIKE THAT. By mid-afternoon the pain started to come in pulses, getting ever stronger to the point I could hardly stand it. On a pain level between 1 and 10, it was a 12. Mind you I can take a lot and have a high resistance to meds, but this was unreal. At first I sat in a chair and gazed thru the TV, trying to take my mind off of it. I struggled and stayed up all night, finally nodding off around 5:30AM. Morning came and I knew my wife would be off to work around 6:30, and the home health nurse would visit shortly after that.

I got cleaned up a little and had some tea. The nurse called and said she was on her way. As I sat there, at the kitchen table, I pulled out our laptop to take my mind off of the second phase of paid that was soon to come. They said it start around my shoulders this time. NOW THIS IS THE IMPORTANT PART: I sat there scanning thru web pages of Christian sites looking for a medallion I wanted to get my wife. On one of them were the lot of pendants and medallions, but along the side of the page was a list of patron saints and what causes they helped. Mind you, I have been Catholic all of my life, but never put much faith in the saints, thinking it more-or-less something man had done and not God. While scrolling down thru the saints, I found the name Lazioso Peregrine. I read about his story which intrigued me. He wasn’t even Catholic at first and was very rebellious. And then I softly, out load, I read the prayers and novena that followed. Immediately the pain left my shoulders, as if someone had turned off a light switch. It was not something of the mind or brain, but there was divine intervention thru the help of St. Peregrine. You see, I wasn’t looking for him, HE WAS LOOKING FOR ME! I was merely looking for some jewelry for my wife, and he found me. He took away my pain and suffering, and intervened for me to God, as a close friend helps another.

Dave

Dear Dave
I just joined the American Cancer Survivors Network as my husband was diagnosed 6 years ago with Multiple Myeloma. Our primary doctor caught it early from a general checkup. She referred him to an oncologist in our area but at the time the oncologist said it was not necessary to start Chemo or anything. They just put him on 50,000 units of vitamin D by prescription. Than in May of this year my husband got terribly sick took him to primary doctor and she said get him over for a chest exray immediately. We did and it was determined that he had double pnemonia. Never saw my husband so sick in my life, he is 69 we have been married 43 years. Doctor admitted him to hospital from her office. Got him to the hospital and our pulmonary doctor got right over. They immediately got him into ICU, his oxygen level was bad, he was so anxious he looked like he was going to jump out of the bed. I stayed with him still the early morning and by than they had every kind of doctor checking him out. His kidneys failed, and everything you could think of. He spent 17 days in ICU and 2 days in DOU. He was released and by than they had discovered that the cancer got aggressive and he started chemo almost immediately after he got out of the hospital for double pnemonia and everything else that could go wrong with him. He now goes Tue and Fri for Chem two weeks out of 4, than he gets 2 weeks off chemo. When it started and he was given the cocktail with the steroids he was jumping out of his skin. I know because I had been on steroids for my back a few different times. He needed an aid to sleep. He has been back on the Chemo two days last week and Fri of this week. Fri was his last Chemo and he will be off for the next two weeks. My husband put twenty years in The United States Marine Corps and spent over 18 months in Vietnam during the war, in Fubi, Dunghow....sorry spelling probably wrong! Also he was in DaNang, not a grunt but was in C&E battalion where they fixed lots of the electronic gear. Unfortunately while in the hospital the infectuous disease doctor said that all VA records show that of the 12 cancers determined from the Vietnam war one in specific was Multiple Myeloma as it developed from Agent Orange. It's unfortunate that wars not only have the tragedy of losing life from bombs, rifles, and all the other means that our military guys are killed, but the government doesn't ever tell the story about chemicals they use in war for all kinds of purposes and than years later it is determined you can get cancer and all kinds of strange and weird medicals things develop. My father put 32 years in the United States Marine Corps and was the second Sgt. Major selected in the Marine Corps when that rank was established. He fought in Korea, Vietnam on 3 tours, but although he was wounded and hospitalized he never talked much about the war. In any case getting back to my husband....even though he hasn't had Chemo for that long he has become recluse and stays in his office most of the day, stopping to laydown often as he is very tired and fatigued. He was working in Aero Space and the company he worked for shut down there California facility and took it back to Johnson City, New York in December of 2009. He was beginning to look for another job, but than the Cancer started up and now he is staying in most of the time and I cannot seem to get him out of the house. He doesn't want to talk much about the Multiple Myeloma, just occastionally when we go for treatments two times a week. His appetite is pretty good....says that some things just don't taste the same. The doctor put him on Zoloft as an antidepressent, but I know he is still down. He has always been an avid reader...I mean avid, not only books but newspapers, books on tape. He is a very intelligent guy, but it seems like he is drawing back. Anyone out there have similar experience. I also was amazed at Dave's finding the Patron Saint Lazioso Peregrine. I was also raied Catholic, my husband hasn't really practiced religion but he does believe in a higher power. I had an aunt who prayed to St. Francis and swore it was because of this saint that she was able to heal herself a number of times from different ailments. What a wonderful story about softely speaking the prayers and novena's. I'm a believer that God is and always has been looking over us. I am glad Dave somehow had a miracle happen to him. Everybody out there with Cancer live each day to the fullist and say the things you often mean but do not say to your loved ones and family. Share the love you have inside, but bring it out to all family, loved ones and friends who care about you. God Bless All! KJW

Rory1987

caregiverboomer said:

second guessing treatments
I am a 51 yr old woman who lost her 53 yr old husband last year to mm. I fell off the roof through a pool cage in 2004 and he caught me. When I dropped down in his arms he fell to the ground and could not get up. That was when they found his first single cell plasmacytoma. He had kypoplasty and thalamide w/dex and 38 radiation treatments. Then the next year he went into renal failure. He had dialysis 3 days a week for 4 hrs @ a time. He seemed to be in remission for about a year and a half. From taking the high dose steroids he picked up a infection in his brain called nocardia. He had to have brain surgery to remove that and take antibiotics for one year. He seemed very healthy except for a bit of tiredness from the dialysis. In december of 2007 he started getting bad pain in his shoulder blade. He went for a MRI and we were told he had another plasmacytoma and he needed to have radiation again and start on the velcade. He did the treatments and the drs. recommended he proceed with a stem cell transplant. We were able to harvest after 3 attempts and finally had enough stem cells harvested to proceed. In July we went into the hospital for a transplant expecting to be there for 6 weeks and returning home. Things went terribly wrong and his transplant did not take and he ended up in the ICU and after 90 days in the hospital his battle ended. Not from the cancer but from the procedure. He contracted Mersa, c-diff and other hospital born infections due to his diminished immune system. My point is not to discourage anyone from trying every thing possible to stay alive I just want others to know that the doctors tell you it's no big deal to have a transplant and that you will be in and back home in a matter of weeks. Do your research. Meds they have out there today maybe the better alternative. I have been second guessing my decision of honoring my husbands DNR in the hospital but I can't change a thing now. My prayers are with you and want to let you know that the more you understand and ask questions the better you will feel about your decisions. God bless

Keep a positive mental attitude
Hi, Im a 23 year old cancer patient diagnosed with MM last november 2009, I had plasmacytoma 3 years ago, I underwent radiotherapy and now Im undergoing a year of chemotherapy. It's not really that bad if you know how to keep a positive outlook in life. According to xLooking Forwardx in one of their songs "the important thing is to remain calm, keep a positive mental attitude" and it helped me keep my mind off things and stay away from depression. Keep fighting.

Tencijup

GeoM said:

My husband also has myeloma.
I was wondering if anyone who reads these messages has read about the protocol which cured a guy with myeloma. This protocol is listed on many web sites, just do a search with these words "myeloma beta glucan remission Scheinbart" and you will find them. Anyway, for right now, here is one of the sites which list this protocol:
www.beta-glucan-13d.com/beta%20glucan%20myeloma.htm
I found that Eric A. Scheinbart, M.D., who is co-author of this protocol is at:
Memorial Family Medical Assoc.
213 Mims Rd # A
Sylvania, GA 30467
(912) 564-2026
I did not contact the place. I would like to know if any of you had any experience with taking any of the meds listed in this protocol, and what kind of results you had. Please comment for all of us if anything good or bad happened to you.
Here is the protocol:
- Beta 1/3 D Glucan
- Mak-4
- Mak-5
- Pro-Boost Thymic protein A
- Gerovita GH3
- Maitake mushroom extract
The quantity and how to take everything is described on the web site above.
I did lots of reasearch on each of the meds listed and I found very good things about all of them. It's only one thing I found bad (?) about beta-glucan, so I don't know if beta glucan is good for everyone or not, although, it is stated in many places that is very good for MM.
This is the bad thing i found:
http://www.jbc.org/cgi/content/full/278/3/2043
Does anyone undestands well this article ?
Thanks for reading this comment and God bless you all.

Did you end up trying the

Did you end up trying the above protocol? Have you heard of people who did? I stumbled upon dr. scheinbart't alternative protocol and was wondering if it works.  

 

 

Joyful55

Support

 I joined this support group because I have a friend who told me last year that she had cancer. Last week she told me she had multiple myeloma.We've only communicated and seen each other intermittently  and now I know why from reading these posts. I have a neuromuscular disease which had me thinking about all I have to go throw to make it through the each day. I feel guilty as a friend because I can only imagine  how lonely it could be to have cancer and to have to go through different kinds of treatments, and then not know what will happen next. How can I best support my friend? 

mayamw

pc_thompson said:

Betsee,

Sounds like you have had a very tough go of it. Wish you nothing but the best. Keep a positive outlook, it makes things easier to handle. I was diagnosed with MM in June of 02, and have done radiation, chemo, and two stem cell transplants. Feeling good now, with things more or less under control, so it can be done. Would be happy to share my experiances, if it would help you. I find that if you have an idea of what to expect, it makes things more tolerable. I get my care at University Hospital in Cleveland, the Ireland Cancer Center. It also helps if you take and active role in deciding your own treatment options. Never be afraid to ask questions or be a total pain in the butt if helps you be more informed.

Shot me a note if you like, and the best of luck!

Andy

experiences

Hi pc_thompson,

I know your post was from 13 years ago, wondering if you're still up for sharing your experiences.

I hope this message reaches you. If so, please share your email address so we can communicate directly.

I thank you in advance!