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Support for Multiple Myeloma

Betsee
Posts: 1
Joined: Mar 2004

Hello, anyone out there with this disease? I recently have started the journey with this disease. Diagnosed with MM in July due to abnormal protein in blood IGA. Compression fracture on spine found on bone scan and few spots elsewhere were noted in July 03. Hospitalized in August03 with severe back pain, two days later went paralyzed from waist down. Doctors found tumor on spine coming from comprsession fracture. Radiation for couple weeks didn't reduce the tumor. Surgery was only option. First one done Sept. 10th after six hours in I started to hemmorhage and had small heart attack, collapesed lung and woke in Intensive care to be told they had to finish the surgery in two weeks. Second surgery was successful and removed the tumor and vertebrae. Movement began to return and doctors were hopeful that I would walk in six to eight months. Prognosis was good for me as far as the cancer because I am 43 years old and healthy. Treatment started with the Thalidomide and Decadron. My counts were going down and I was almost in remission last month 400-500 range (3000-4000 in Aug). Two weeks ago they were 1100, so doctor said the drugs stopped working. He stared me on Velcade IV twice a week for two weeks and one week off. I have a blood test scheduled with week and will find out more when I see him next week. Stem cell transplant in the future will be discussed when I see him also. I am starting to walk with a walker and doing real good. Would like to hear from others with this disease.

AuthorUnknown
Posts: 1564
Joined: May 2006

Betsee - unbelievable story - I was diagonosed with MM in Sept 2003 after having a bad back ache!!!!!! Been all down hill since then.........chemo and cancer, thats all that rules my life now...... its been tough......

pc_thompson
Posts: 1
Joined: Apr 2004

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

haynycr
Posts: 1
Joined: Apr 2004

I would greatly apprceiate any info you could give to me on mm. My mother -in law was just diagnosed with this on Thursday and we go for a bio on wed. Please give me info on what to expect. She has had terrible back pain. Hope you are doing well.

mygen
Posts: 9
Joined: Mar 2004

MY MOTHER HAS MM. SHE WAS DIAGNOSED IN 1988 AFTER HAVING FLU SYMTOMS FOR SEVERAL MONTHS. FROM WHAT WE HAVE BEEN TOLD THE CANCERS THAT YOU CAN GET FROM MM ARE FAR WORSE. THE STEM CELL TRANSPLANTS CAN BE VERY BENEFICIAL TO PEOPLE WITH MM. MY ADVICE FOR YOU IS TO GET ALL THE INFORMATION YOU CAN BEFORE DOING ANYTHING. MY MOTHER HAD A FEW TREATMENTS THAT WERE NOT IN HER BEST INTEREST. MY MOM NOW ALSO HAS AMYLOID WHICH HAS COMPLETLY SHUT DOWN HER KIDNEYS. IT HAS BEEN VERY HARD ON HER. SHE ALSO HAS NEUROPATHY IN HER LEGS WHICH THE AMYLOID HAS ALSO CAUSED. SHE IS HAVING A VERY HARD TIME GETTING AROUND. I WOULD LIKE TO COMMEND YOU FOR YOUR CONCERN. MY HUSBAND IS A VERY CARING PERSON BUT HAS NEVER TAKEN AN INTEREST IN HER DISEASE. MY MOM IS NOW 60 AND HAVING TO RETIRE FROM HER JOB DUE TO THE NERVE DAMAGE IN HER LEGS. HOW OLD IS YOUR MOTHER-IN-LAW? I DON'T KNOW HOW MUCH I CAN OFFER YOU FOR INFORMATION BUT I AM VERY WILLING TO SUPPORT YOU EMOTIONALLY. THIS IS A VERY HARD THING TO GO THROUGH. MAY GOD BLESS YOU AND YOUR FAMILY.

jemasoc
Posts: 1
Joined: Jul 2002

I was diagnosed MM in Dec. 2001 after a long period of anti-biotics to cure a cold or bronchitis that would not go away. Like everyone one else the shock was enormous but after checking around I chose the transplant following the usual chemo etc...On June 4th I went through the transplant using my own cells. The 21 days of isolation and treatments were nothing to write home about, but I survived.I continue to receive one shot of Nuepegon per month and Zometa for my bone build up every 3 months. I was going for a bone marrow check up every 3 months and as of my last check in UNC Chapel Hill NC I am in remission and only have to go back in 6 months.I still have blood tests every month & the shot but all readings are well.Because of the Myeloma your ant-bodies are weak and your fight against colds is down.In Dec 2001 I thought I would never see 70 and as of Mar. I had my 70th and still going strong.

CWHITE
Posts: 1
Joined: Jan 2004

Hi there, I am new to this website and was wondering if you could give us some information about the stem cell transplant. My husband is scheduled to have one in late July.

kickbox
Posts: 1
Joined: Oct 2004

Andy,

My husband was diagnosed in May '04 with MM. 41, great health, active, and in shape. What a shock! Anyway, you said you were up for questions so I have one fo ya. Jim has responded well to Thalidomide, decatron, and arideia and is almost in the "remission" phase 10/04. His Dr's want him to do a stem cell transplant as early as January. They say it is the optimal time becasue he is so healthy. We go to Barnes in St. Louis. With your experience through all your trials, what do you think? Should we go ahead with the stem cell transplant? It is a very scary thought to be so vulnerable. Your comments are appreciated. Best luck to you, our prayers are with you and all those who share MM.

Sharon

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Kickbox,
My husband was diagnosed in March 2004 at age 51. He too is very early stages and in fairly good health. He just had his stem cells collected for the transplant that will be done fairly soon. He got shots of a drug called Neupogen for a week to mobilize the stem cells. It is usually a 3-4 day process of collection to get the quantities needed for transplant, however my husband only needed it done once and they got all they needed for the transplant. Now we are waiting for a date for the next step which is high dose chemo followed by stem cells being infused and waiting to see that complete remission is achieved. This is from all I have read the best treatment available and the best time is early in the disease.

Anyhow, best of luck to you and your husband. Linda

Jim L.
Posts: 3
Joined: Jan 2010

I would like to know if you have the same side symtoms I have after taking thalidomide as I have lost feeling in my feet and hands. Hands feel like their full of sand. The Dr tried me on decatron and it was only 2 days worth but really shot my immune system. I have probally had 15 blood transfusions over the last month and just had a bone marrow biopsy last week so the Dr. can determine what to do next. Would appreciate hearing back from you. My email jdlw31@att.net

prisgage
Posts: 5
Joined: Apr 2004

Sounds like you been through it! Keep up the fight...do you have any feedback for a healthy 79 year old mother who is now in her 2nd year of fighting. We are looking at my own Stem Cell transplant, but worry about procedural complications...Prayers to you and good luck

gabbie60
Posts: 1
Joined: May 2004

My Mom was diagnosed with MM 1 yr and 1/2 ago. So far the Oncologist says the blood test show MM but she has no symptoms so far. Where did you start with your search for info? Your story is very incouraging even with the trials you've survived. I have survived Breast cancer since 6/7/99. My Mom is 82 yrs of age and I don't know if she could take some of the treatments I've heard about. What is your sources? If you don't mind I could use some help from someone who has been there and knows the truths about what works and what doesn't. Thanks my name is Carol but gabbie60 is my nickname

DrSteve
Posts: 8
Joined: Mar 2004

Hello, Betsee and others.MM hit me like a ton of bricks end of Oct. 2002 with the hyperviscosity, decreased hemoglobin, lost 3 inches in height(all in back that collapsed)and 40 lbs. in less than 3 weeks.Went through pheresis to delete 6 liters of bad protein just to keep me alive long enough to begin the chemo. for 4 months. Then an autologous stem cell and experimental T-cell transplant. These lasted for a few months before the MM reared its ugly head again with a great vengence that gave me 4 to 6 months to live. Barnes Hospital got me into an experimental program which uses Revimid and dexamethasone as the drugs. The change for me has been dramatic. My monoclonal spike has dropped from 6.5 to 1.6 in 56 days. My back still kills me, but that will be the case for the rest of my life. When I am off the steroids, the other bone pain is also quite nasty,BUT I am still alive and working. I see a full day of patients and still exercise and run 3 miles 3 to 5 times a week. It hurts like the devil, but it hurts anyway. So I force myself to do it. With this disease, as others have said, your attitude is everything. Be strong for yourself, and more for your loved ones. They know the struggle you're going through, but it's easier on them if you can fake some of the strength. Good luck and my prayers go to you and your family. There are many great things on the horizon for this disease. Keep the faith. DrSteve

GeoM
Posts: 1
Joined: May 2005

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.

leann52
Posts: 2
Joined: Nov 2006

GeoM,
Have you found anyone who has tried this protocol? I am an MM patient, and wouldlike to know if it worked for you or anyone else.

DARRELLD
Posts: 2
Joined: Mar 2006

This is my 6th year with MM.Now Ihave compression fractors in spine and pain also.I am on Velcade 2days a week, 2 weeks on 1 week off.Just started Treatment 2weeks ago. I had a stem cell transplant in 2004. did well untill now,cancer is flaring up. There was small talk about back sugery, I still have wobbly legs.Will see Dr. next week and see where I am at.
good luck to you.

GypsyGal
Posts: 1
Joined: Sep 2006

my MM was diagnosed in 2001. i didn't need any treatment until August 2004. went into remission for 6 mos. had more cheom, and drugs didn't work. now i'm going ready to go back on chemo, but with new drugs. hopefully these will work. afrer my proteins go down, i will be considered for a stem cell transplant. this a wierd disease!

Orange007
Posts: 6
Joined: Nov 2009

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

bito
Posts: 5
Joined: Oct 2009

couple of months ago my mom took a fall as she was hanging a calender on the wall. and since she never really recovered from the pain. After series of tests she was diagnosed with multiple illness and started treatment with not much success as the pain worsen and even more frustrating given poor technology in Africa they couldn't make further prognosis to explain the pain. Anyways long story short I turned to God with the help of St Jude asking for a proper diagnosis so to speak so that she could get a proper treatment. I started a nine days novena to st Jude and miraculously on the 9th day i got a call a good Samaritan offered a full financial sponsorship to India for further treatment. it was there that she was diagnosed with mm and currently undergoing treatment. so yes miracles do happen and yes sometimes we need heavenly innervation and that's where saints come in!

karen08
Posts: 3
Joined: Feb 2010

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
Posts: 8
Joined: Jan 2010

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

kjw1947
Posts: 1
Joined: Jul 2010

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

Jim L.
Posts: 3
Joined: Jan 2010

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.

karen08
Posts: 3
Joined: Feb 2010

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

caregiverboomer
Posts: 1
Joined: Feb 2010

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

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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.

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