Support for Multiple Myeloma

Betsee
Betsee Member Posts: 1
edited March 2014 in Multiple Myeloma #1
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.
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Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    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
    pc_thompson Member Posts: 1
    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
    haynycr Member Posts: 1

    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

    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
    mygen Member Posts: 9
    haynycr said:

    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.

    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
    jemasoc Member Posts: 1
    haynycr said:

    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.

    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.
  • prisgage
    prisgage Member Posts: 5
    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
    gabbie60 Member Posts: 1
    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
    DrSteve Member Posts: 8
    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
  • CWHITE
    CWHITE Member Posts: 1

    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

    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
    kickbox Member Posts: 1

    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

    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
    AuthorUnknown Member Posts: 1,537 Member
    kickbox said:

    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

    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
  • GeoM
    GeoM Member Posts: 1
    DrSteve said:

    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

    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.
  • DARRELLD
    DARRELLD Member Posts: 2
    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.
  • leann52
    leann52 Member Posts: 2
    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.

    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.
  • GypsyGal
    GypsyGal Member Posts: 1
    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!
  • This comment has been removed by the Moderator
  • Orange007
    Orange007 Member Posts: 6
    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
  • bito
    bito Member Posts: 5
    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

    Power of saints
    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!
  • Jim L.
    Jim L. Member Posts: 3
    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.
  • Jim L.
    Jim L. Member Posts: 3
    kickbox said:

    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

    I would like to know if you
    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