Survival Rate??

Motogal
Motogal Member Posts: 8
edited March 2014 in Multiple Myeloma #1
first i want to say that it was weird how i found this site. i had gotten an email from a Dr. in the family who said that my mom's survival rate was about 2-5 yrs with the stem cell transplant. I have a friend who's dad has MM also and he was diagnosed 12 years ago. So i was confused who to believe. I did some online research and sure enough 5 years was the longest i saw. But is that just a # they give out?

then as i was watching TV, the commercial for this website came on, it was freaky!!! so here i am.

Can you guys share some of your stories here with me? Should i trust in those #'s?

Comments

  • cbroombaugh
    cbroombaugh Member Posts: 1
    #2
    Greetings Motogal;

    I too was confused about the survival rate of MM. Only yesterday, my wife and I met with a specialist in Tampa to discuss my MM treatment and next steps. Things are going to get tougher.

    I expressly asked about mortality and got the same 3-6 years rate. After my dear wife (my rock) lost it and left the room, the doctor gave me more hope than the 3-6 year number. Her expressions were one of hundreds of patients through Moffit hospital over the last 6 years with an 88% better-than-6-year mortality rate. These patients seem to be in remission and probably fall into the earlier age brackets [my assumption]. From the exams planned to test my heart, lungs, and liver, it would seem that older patients with weakened immunities and tired internal organs fall into the statistical 3-6 year number. I was given the impression that mortality is compromised by the lack of immunities the body can produce after the transplant of bone marrow (generally administered to combat MM). I was told people with MM would are highly prone to contracted infections after treatment and this is the reason for 2-5, 3-6 statistic you got.

    I am only in the middle of my treatment path currently. Previous months of chemo through outpatient care is not combating quickly enough and we are accelerating the bone marrow (autologous) process -as early as next week. 4-6 weeks in the hospital 150 miles from home. This will take it's toll.

    I hope this helps. Truly sorry if I gave unneeded gab. Feel free to send me questions if you have any.

    Regards, Charlie
  • Motogal
    Motogal Member Posts: 8
    #3
    cbroombaugh said:

    Greetings Motogal;

    I too was confused about the survival rate of MM. Only yesterday, my wife and I met with a specialist in Tampa to discuss my MM treatment and next steps. Things are going to get tougher.

    I expressly asked about mortality and got the same 3-6 years rate. After my dear wife (my rock) lost it and left the room, the doctor gave me more hope than the 3-6 year number. Her expressions were one of hundreds of patients through Moffit hospital over the last 6 years with an 88% better-than-6-year mortality rate. These patients seem to be in remission and probably fall into the earlier age brackets [my assumption]. From the exams planned to test my heart, lungs, and liver, it would seem that older patients with weakened immunities and tired internal organs fall into the statistical 3-6 year number. I was given the impression that mortality is compromised by the lack of immunities the body can produce after the transplant of bone marrow (generally administered to combat MM). I was told people with MM would are highly prone to contracted infections after treatment and this is the reason for 2-5, 3-6 statistic you got.

    I am only in the middle of my treatment path currently. Previous months of chemo through outpatient care is not combating quickly enough and we are accelerating the bone marrow (autologous) process -as early as next week. 4-6 weeks in the hospital 150 miles from home. This will take it's toll.

    I hope this helps. Truly sorry if I gave unneeded gab. Feel free to send me questions if you have any.

    Regards, Charlie

    Charlie, so far my mom's blood count has been high, she's had the 4 cycles of VAD and now discussing plans to start the AuSCT at Sloan in NY. Before chemo, her tests were fine. She has had no bone pain, bone scan was good...she did well on the lung and heart tests. She does have a problem with kidney-she has nephrotic syndrome. And eventhough she is 64, she is healthy with a good immune system. So i should have no reason to believe this 6 year cap. I am hopeful.

    i would like to hear more stories from people here.
  • Motogal
    Motogal Member Posts: 8
    #4
    cbroombaugh said:

    Greetings Motogal;

    I too was confused about the survival rate of MM. Only yesterday, my wife and I met with a specialist in Tampa to discuss my MM treatment and next steps. Things are going to get tougher.

    I expressly asked about mortality and got the same 3-6 years rate. After my dear wife (my rock) lost it and left the room, the doctor gave me more hope than the 3-6 year number. Her expressions were one of hundreds of patients through Moffit hospital over the last 6 years with an 88% better-than-6-year mortality rate. These patients seem to be in remission and probably fall into the earlier age brackets [my assumption]. From the exams planned to test my heart, lungs, and liver, it would seem that older patients with weakened immunities and tired internal organs fall into the statistical 3-6 year number. I was given the impression that mortality is compromised by the lack of immunities the body can produce after the transplant of bone marrow (generally administered to combat MM). I was told people with MM would are highly prone to contracted infections after treatment and this is the reason for 2-5, 3-6 statistic you got.

    I am only in the middle of my treatment path currently. Previous months of chemo through outpatient care is not combating quickly enough and we are accelerating the bone marrow (autologous) process -as early as next week. 4-6 weeks in the hospital 150 miles from home. This will take it's toll.

    I hope this helps. Truly sorry if I gave unneeded gab. Feel free to send me questions if you have any.

    Regards, Charlie

    BTW- Good Luck Charlie! Keep a positive outlook and we will win.
  • Susi
    Susi Member Posts: 6
    #5
    Hi, Motogal I too heard about the site on the TV. I am so glad to find someone currently chatting about Multiple Myeloma. I was diagnosed in 99 had extensive chemo, radiation and stem cell transplant and am still now in remission. I too have been told of the 3-5 year survival and know that getting to the 5 year and beyond is going to be the trick. My doctor tells me he has one 7 and 9 year survivors and all the rest are recurring if not in the myeloma in another form of cancer in the 4-5 year range. As far as numbers go, I really choose not to take too much faith in them because there's only one who knows. Unbelievably, my Mom was diagnosed with Multiple Myeloma one year after mine at 72, she only survived 2 years and left us almost one year ago in April of last year. We are the only known cancer members of our entire very large family, and doctors tell us there is no genetic connection and merely coincidence. (?)I would very much like to keep in touch with you and see how your mother is doing. I was 49 when I was diagnosed, widowed and mother of 6.
    If you have any questions, please let me know and I will try to answer them. I probably have children your age. Susi
  • Motogal
    Motogal Member Posts: 8
    #6
    Susi said:

    Hi, Motogal I too heard about the site on the TV. I am so glad to find someone currently chatting about Multiple Myeloma. I was diagnosed in 99 had extensive chemo, radiation and stem cell transplant and am still now in remission. I too have been told of the 3-5 year survival and know that getting to the 5 year and beyond is going to be the trick. My doctor tells me he has one 7 and 9 year survivors and all the rest are recurring if not in the myeloma in another form of cancer in the 4-5 year range. As far as numbers go, I really choose not to take too much faith in them because there's only one who knows. Unbelievably, my Mom was diagnosed with Multiple Myeloma one year after mine at 72, she only survived 2 years and left us almost one year ago in April of last year. We are the only known cancer members of our entire very large family, and doctors tell us there is no genetic connection and merely coincidence. (?)I would very much like to keep in touch with you and see how your mother is doing. I was 49 when I was diagnosed, widowed and mother of 6.
    If you have any questions, please let me know and I will try to answer them. I probably have children your age. Susi

    thank you Susi. i cant believe your mom had it also. this is supposed to be such a rare cancer, yet i think its perhaps just not diagnosed too often. i hope its not hereditary.

    the latest on my mom is that so far her first round of chemo had a good response. Her plasma cells dropped and protein in her urine dropped (she has nephrotic syndrome also). And so far all tests say she does not have amyloid. she is to get a kidney biopsy soon, cuz the dr. at Sloan wants to be sure. if all goes well, she can get the stem cell transplant. i am hopeful. I too dont trust the numbers they quote at you. My friend's dad was diagnosed 12 yrs ago and he was worse off and on top of it is on dialysis and is diabetic. And he is still kickin. its the will to live i think. I wont let her give up.
  • carrielou
    carrielou Member Posts: 1
    #7
    cbroombaugh said:

    Greetings Motogal;

    I too was confused about the survival rate of MM. Only yesterday, my wife and I met with a specialist in Tampa to discuss my MM treatment and next steps. Things are going to get tougher.

    I expressly asked about mortality and got the same 3-6 years rate. After my dear wife (my rock) lost it and left the room, the doctor gave me more hope than the 3-6 year number. Her expressions were one of hundreds of patients through Moffit hospital over the last 6 years with an 88% better-than-6-year mortality rate. These patients seem to be in remission and probably fall into the earlier age brackets [my assumption]. From the exams planned to test my heart, lungs, and liver, it would seem that older patients with weakened immunities and tired internal organs fall into the statistical 3-6 year number. I was given the impression that mortality is compromised by the lack of immunities the body can produce after the transplant of bone marrow (generally administered to combat MM). I was told people with MM would are highly prone to contracted infections after treatment and this is the reason for 2-5, 3-6 statistic you got.

    I am only in the middle of my treatment path currently. Previous months of chemo through outpatient care is not combating quickly enough and we are accelerating the bone marrow (autologous) process -as early as next week. 4-6 weeks in the hospital 150 miles from home. This will take it's toll.

    I hope this helps. Truly sorry if I gave unneeded gab. Feel free to send me questions if you have any.

    Regards, Charlie

    Hi charlie, thanks for the information on survival. My mom has mm and was diagnosed in October 2002. She has had three chemos and was responding well. Her protien came way down, her pain was gone. She is only 59 and has no other health problems. We are waiting to begin a autologus transplant (her own cells) they thought she was ready after three chemos, but her ratio of cancer cells was still too high, so they put her on thalidomide. She says it makes her feel horrible. She has to take it for 4 more weeks. Them another bone marrow biopsy. Hopefully she will be ready for the stem cell transplant.
    I saw that you were starting yours this month. Have you started yet? How are you doing? Any advice for her? She will be going to City of Hope in Duarte California. You could email us at makeupclinic@att.net you'll be in my prayers,
    kimberly
  • peter1862
    peter1862 Member Posts: 3
    #8
    Motogal said:

    thank you Susi. i cant believe your mom had it also. this is supposed to be such a rare cancer, yet i think its perhaps just not diagnosed too often. i hope its not hereditary.

    the latest on my mom is that so far her first round of chemo had a good response. Her plasma cells dropped and protein in her urine dropped (she has nephrotic syndrome also). And so far all tests say she does not have amyloid. she is to get a kidney biopsy soon, cuz the dr. at Sloan wants to be sure. if all goes well, she can get the stem cell transplant. i am hopeful. I too dont trust the numbers they quote at you. My friend's dad was diagnosed 12 yrs ago and he was worse off and on top of it is on dialysis and is diabetic. And he is still kickin. its the will to live i think. I wont let her give up.

    Motagal: You mentioned Slone on your last reply. If you refer to Slone-Kettering in NYC that's where my MM was treated at first. My Dr was Ray C. A very good cancer doc, but I live on the Island and switched to Winthop for the Stem Cell transplant. No matter who your mom has, she is in very good hand there. Your dad's friend may have had "smoldering" MM and that is how he lasted 12 years, and/or everyone is differant. The offical surival rate is only 4-6 years BUT, the studies were done on the "classic patient" A Black Male over 70 years of age. I think mom will be ok. Keep the faith.
  • sperrins
    sperrins Member Posts: 6
    #9
    peter1862 said:

    Motagal: You mentioned Slone on your last reply. If you refer to Slone-Kettering in NYC that's where my MM was treated at first. My Dr was Ray C. A very good cancer doc, but I live on the Island and switched to Winthop for the Stem Cell transplant. No matter who your mom has, she is in very good hand there. Your dad's friend may have had "smoldering" MM and that is how he lasted 12 years, and/or everyone is differant. The offical surival rate is only 4-6 years BUT, the studies were done on the "classic patient" A Black Male over 70 years of age. I think mom will be ok. Keep the faith.

    Motagal
    I'm 56 and was diagnosed last April. Had 3 rounds of VAD and did the stem cell transplant in Sept. Not as bad as I thought. I am in good physical shape and the Doc said that was to my advantage. As of Jan 6th I am in remission so I now join the group of hopefuls as to how long I can last. Have you mom hang in there and go for the transplant. Don't know if you've been reading about things like Velcade and Curcumin, but it just says things are coming and coming fast. So if we can buy a few years, who knows what will be available.
    Good Luck
  • tiffany1016
    tiffany1016 Member Posts: 2
    #10
    my father was told he had 5 years as well but lived 15 years so I also think they just throw that number out- People with MM don't die of that- they die of complications of the immune system-
  • elinda
    elinda Member Posts: 3
    #11
    Motogal said:

    thank you Susi. i cant believe your mom had it also. this is supposed to be such a rare cancer, yet i think its perhaps just not diagnosed too often. i hope its not hereditary.

    the latest on my mom is that so far her first round of chemo had a good response. Her plasma cells dropped and protein in her urine dropped (she has nephrotic syndrome also). And so far all tests say she does not have amyloid. she is to get a kidney biopsy soon, cuz the dr. at Sloan wants to be sure. if all goes well, she can get the stem cell transplant. i am hopeful. I too dont trust the numbers they quote at you. My friend's dad was diagnosed 12 yrs ago and he was worse off and on top of it is on dialysis and is diabetic. And he is still kickin. its the will to live i think. I wont let her give up.

    Mayo's numbers are better than 5 years and that is with amyloid and multiple myeloma. My husband is one year out from stem cell following amyolid and multiple myeloma diagnosis. He is doing great although he is still tired. High dose dex prior to the stem cell did help reduce the number of plasma cells before the transplant. His numbers look good. Amyloid is so hard to diagnose, they had to do a heart biopsy for his diagnosis. If it is amyloid you will have to move quickly as it effects the organs almost simultaneously and can lead to major problems(as we know first hand). The biggest problem is getting insurance approval in a timely manner. Good Luck.
  • suzannah
    suzannah Member Posts: 3
    #12
    carrielou said:

    Hi charlie, thanks for the information on survival. My mom has mm and was diagnosed in October 2002. She has had three chemos and was responding well. Her protien came way down, her pain was gone. She is only 59 and has no other health problems. We are waiting to begin a autologus transplant (her own cells) they thought she was ready after three chemos, but her ratio of cancer cells was still too high, so they put her on thalidomide. She says it makes her feel horrible. She has to take it for 4 more weeks. Them another bone marrow biopsy. Hopefully she will be ready for the stem cell transplant.
    I saw that you were starting yours this month. Have you started yet? How are you doing? Any advice for her? She will be going to City of Hope in Duarte California. You could email us at makeupclinic@att.net you'll be in my prayers,
    kimberly

    hello, Suzannah here from the united kingdom. 56 years old diagonsed with MM in March 2003 undergone chemo etc then stem cell transplant in November 2003, doing fine now, I hope this e-mail finds you the same please reply if you wish to talk further. Best Wishes and may your god be with you.
  • ivad
    ivad Member Posts: 5
    #13
    tiffany1016 said:

    my father was told he had 5 years as well but lived 15 years so I also think they just throw that number out- People with MM don't die of that- they die of complications of the immune system-

    *****post deleted*****

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