Multiple Myeloma experiences

htaif
htaif Member Posts: 2
edited March 2014 in Multiple Myeloma #1
Reading the notes posted by everyone, at looks like we should compare the treatments that we have received. I notice one person is taking the Dex------- don't remember the complete spelling, but we call it decodron.

my husband is on this same medicine, but it's only a part of his treatment. The completed treatment has the initials VAD with the D being the word I spoke of above. The other two is in the chemo that my husband receives at home once a month. HIs levels were at 3300 when he started on this protocol. Now they are down to 1500! So you can see that it has worked. I will go into more detail if you email me, and also get the correct spelling. John Hopkins is a great hospital, and our oncologist has lots of experience treating multiple myeloma patients. Again my email address is jojowhite23@ hotmail .com

God Bless

Comments

  • zia111
    zia111 Member Posts: 3
    #2
    My son was given less than five years 2/1/2years ago. He under went a T-cell transplant chemo and radiation treatments. His quality of life has been and is terrible.Of course he was never told what kind of quality of life to expect after the treatment. He is completely blind in one eye and has torouble seeing out of the other eye. down one completele side of his body is loosing his teeth has no hair and is constantly depressed. He has lost his wife and the custody of his children. What good has this clinicla trial done anyone . He doesn't love life any longer.He fells that he doesn't have anything to live for. Does the hospital care ? They don't act as if they do. It's like pulling teeth toget them to respond to any care that he is given.What a rre the laws reguarding care givers and cancer???
  • zia111
    zia111 Member Posts: 3
    #3
    My son was given less than five years 2/1/2years ago. He under went a T-cell transplant chemo and radiation treatments. His quality of life has been and is terrible.Of course he was never told what kind of quality of life to expect after the treatment. He is completely blind in one eye and has torouble seeing out of the other eye. down one completele side of his body is loosing his teeth has no hair and is constantly depressed. He has lost his wife and the custody of his children. What good has this clinicla trial done anyone . He doesn't love life any longer.He fells that he doesn't have anything to live for. Does the hospital care ? They don't act as if they do. It's like pulling teeth toget them to respond to any care that he is given.What a rre the laws reguarding care givers and cancer???God bless any and all, Zia111
  • zia111
    zia111 Member Posts: 3
    #4
    My son was given less than five years 2/1/2years ago. He under went a T-cell transplant chemo and radiation treatments. His quality of life has been and is terrible. Of course he was never told what kind of quality of life to expect after the treatment. He is completely blind in one eye and has trouble seeing out of the other eye. He is numb down one complete side of his body is loosing his teeth has no hair and is constantly depressed. He has lost his wife and the custody of his children. He cannot walk alone anywhere. What good has this clinical trial done anyone . He doesn't love life any longer. He feels that he doesn't have anything to live for. Does the hospital care ? They don't act as if they do. It's like pulling teeth toget them to respond to any care that he is given.What a rre the laws reguarding care givers and cancer???God bless any and all, Zia111
  • sperrins
    sperrins Member Posts: 6
    #5
    JoJo
    Im 56 just starting the same treatment as your husband. Diagnosed 3 weeks ago and already one session of chemo done. I'm slatede for the stem cell trenplant after 4 months of this How about you. Easier to email Im at sperrins1@aol.com would love to chat
  • csalgado
    csalgado Member Posts: 3
    #6
    sperrins said:

    JoJo
    Im 56 just starting the same treatment as your husband. Diagnosed 3 weeks ago and already one session of chemo done. I'm slatede for the stem cell trenplant after 4 months of this How about you. Easier to email Im at sperrins1@aol.com would love to chat

    Hi newly-diagnosed MM patient. I have just seen the TV commercial about Cancer Survivor's Network and so far have only read, not written. I would like to caution you about early rounds of Prednisone and Alkaran, not that I know what you are on. This course of treatment (5 rounds) killed off so much of my husband's own stem cells that an atuologous transplant progressed to the harvesting stage and then was aborted. The transplant of course was the thing that gave us the most hope. My husband is on thalidomide (9 months) and is still working. I would hate for someone else to not be able to have a transplant because of stem-cell-killing chemo that could have been done another way. Good Luck.
  • katieohara
    katieohara Member Posts: 1
    #7
    csalgado said:

    Hi newly-diagnosed MM patient. I have just seen the TV commercial about Cancer Survivor's Network and so far have only read, not written. I would like to caution you about early rounds of Prednisone and Alkaran, not that I know what you are on. This course of treatment (5 rounds) killed off so much of my husband's own stem cells that an atuologous transplant progressed to the harvesting stage and then was aborted. The transplant of course was the thing that gave us the most hope. My husband is on thalidomide (9 months) and is still working. I would hate for someone else to not be able to have a transplant because of stem-cell-killing chemo that could have been done another way. Good Luck.

    My husband took Predisone and Alkaran also.In addition, he has been on Thalomide for over a year.So don't give up!!!! We have been fighting MM for going on 6 years in May with good results. Also, since you are new to MM , be very careful about any dental work you have done.I have noticed that where there is any trauma(hit,bump,ect.) to a bone, or any bone, a tumor may develope!
    Also you might want to check with your doctor about taking Aredia.. it's a bone builder they give to those with osteoporosis.Good luck to you!
  • dmc
    dmc Member Posts: 1
    #8
    sperrins said:

    JoJo
    Im 56 just starting the same treatment as your husband. Diagnosed 3 weeks ago and already one session of chemo done. I'm slatede for the stem cell trenplant after 4 months of this How about you. Easier to email Im at sperrins1@aol.com would love to chat

    My mother-in-law is going through her second bought of MM. Her 1st occurrence was 9 1/2 years ago, so she's been great. She now has bones affected in both shoulders, thighs and her skull. She's doing 4 months of chemo and then the stem cell transplant. I was just wondering how things are going for you now.
  • Arbuckle
    Arbuckle Member Posts: 1
    #9
    csalgado said:

    Hi newly-diagnosed MM patient. I have just seen the TV commercial about Cancer Survivor's Network and so far have only read, not written. I would like to caution you about early rounds of Prednisone and Alkaran, not that I know what you are on. This course of treatment (5 rounds) killed off so much of my husband's own stem cells that an atuologous transplant progressed to the harvesting stage and then was aborted. The transplant of course was the thing that gave us the most hope. My husband is on thalidomide (9 months) and is still working. I would hate for someone else to not be able to have a transplant because of stem-cell-killing chemo that could have been done another way. Good Luck.

    My name is Brenda Arbuckle, My husband Donald was diagone with Multipe Myeloma about 5 weeks ago. He is doing the kidney dialize cause his kidneys shut down and on Oct 10 we started our first chemo treatment. They are giving him one dose every month for 4 months and then we will see about the bone marrow transplant using his own stem cells. I really don't know much about this stuff if anyone can help me with information and what stages he is in. We have been in the hosp for now 6 weeks and he has a lot of back pain. They have him on morphine. He has been have a lot of side effect. He told me he is seeing dead loved ones and they are talking to him. Also doing bazzar things. Dr's says it is the meds. Please email me with any info. My email address is altontwin@yahoo.com. We have a beutiful 13 year old son that isn't taking this very well any advise for him. We did go see the Father today at our church. Thanks Brenda Mae Arbuckle
  • prisgage
    prisgage Member Posts: 5
    #10
    Am trying to get feedback from somebody! My Moms MM began Feb 02 and has tried 3 types chemo including Velcade>(this last fall) It worked great three months into 2004, then things have gone downhill and agressive!..Eye tumors, broken bones, ribs weak hips, etc. Needless to say the pain is awful...now we are waiting on consultation about stem cell transplant (my own). I may not qualify for it and need to go "VAD" This CSN is new to me and today (4-27-04) is first time to try to use is..I got a webpage too "Breezy Bay" BUT my email is prisgage@netzero.net Would loveto visit. Hearts suffer less with a friend.
  • prisgage
    prisgage Member Posts: 5
    #11
    Am trying to get feedback from somebody! My Mom has tried 3 types chemo including Velcade> It worked great three months then things have gone agressive!..now we are waiting on consultation about stem cell transplant (my own). I may not qualify for it and need to go "VAD" This CSN is new to me and today (4-27-04) is first time to try to use is..I got a webpage too "Breezy Bay" BUT my email is prisgage@netzero.net Would loveto visit. Hearts suffer less with a friend.
  • ivad
    ivad Member Posts: 5
    #12
    katieohara said:

    My husband took Predisone and Alkaran also.In addition, he has been on Thalomide for over a year.So don't give up!!!! We have been fighting MM for going on 6 years in May with good results. Also, since you are new to MM , be very careful about any dental work you have done.I have noticed that where there is any trauma(hit,bump,ect.) to a bone, or any bone, a tumor may develope!
    Also you might want to check with your doctor about taking Aredia.. it's a bone builder they give to those with osteoporosis.Good luck to you!

    Hi, Katie! My name is Iva. My father was diagnosed with mm over a year ago. I'd really be happy to hear from you on cards@usitcolours.bg this is my e-mail at work but I check it most regularly). I need to talk to someone like you. Please, drop me an e-mail when you can.

Discussion Boards