psychological treatment/hope of the future

lasvegas
lasvegas Member Posts: 2
edited March 2014 in Multiple Myeloma #1
Dear friends,
I was diagnosed Jan 2002 with multiple myeloma, CD20+ and am being treated here in Las Vegas with a connection to a "guru" of multiple myeloma at Cedars-Sinai in CA, Dr. James Berenson. Have had treatment of Rituxan, Decadron and now on Prednisone as a maintainance drug. Plasma originally 70% now 7% and doctors are very pleased indeed. Dexascan for condition of bones, osteoporosis, done last week shows ZOMETA taken by infusion once a month has improved condition by 5% in spine and 2 1/2% in hips. This is the first improvement in 6 years of taking Fosamax which my oncologists now say is worthless in comparison to Zometa.

Mental state is still a problem as I still do not have great energy and walking a distance is trying. Did walk a mile and a half for the Light the Night Walk and spent the next day paying for it. How do you all keep your mental attitude positive and looking forward? Do you meditate, pray, work, excercise? What?

Would like to hear from any of you when it is convenient about your conditions and how long you have survived this dreadful cancer?
What do you do for yourself on a day to day basis for improvement?

my email is sunnyskies@lvcm.com
thanks Claire

Comments

  • jpin
    jpin Member Posts: 2
    #2
    Claire
    I am new to this discussion group. I was diagnosed in March of 1999, at the age of 45, with stagelll MM. I have undergone radiation to relieve the spinal cord compression due to fractures, 8 cycles of VAD, and a peripheral stem cell transplant. I have been in remission since April of 2000. I am unable to work. I spend a lot of time keeping in touch with friends. I have taken up scrapbooking, which is relaxing and enjoyable. My husband is afraid to get as close as we once were, because he's waiting for the other shoe to drop. That is the hardest part of all of this. I won't let that take over my life, however. I am grateful for this time. Every year in June, I have participated in Blood Cancer Advocacy Days in Washington, DC. Kathy Guisti, head of the MM Research Foundation, and many leading researchers speak there, and I find it to be very encouraging. I really feel that better meds are being developed to treat or beat MM. I'd love to hear from you.
    Joanie
  • csalgado
    csalgado Member Posts: 3
    #3
    jpin said:

    Claire
    I am new to this discussion group. I was diagnosed in March of 1999, at the age of 45, with stagelll MM. I have undergone radiation to relieve the spinal cord compression due to fractures, 8 cycles of VAD, and a peripheral stem cell transplant. I have been in remission since April of 2000. I am unable to work. I spend a lot of time keeping in touch with friends. I have taken up scrapbooking, which is relaxing and enjoyable. My husband is afraid to get as close as we once were, because he's waiting for the other shoe to drop. That is the hardest part of all of this. I won't let that take over my life, however. I am grateful for this time. Every year in June, I have participated in Blood Cancer Advocacy Days in Washington, DC. Kathy Guisti, head of the MM Research Foundation, and many leading researchers speak there, and I find it to be very encouraging. I really feel that better meds are being developed to treat or beat MM. I'd love to hear from you.
    Joanie

    I see the names Joanie and Claire and am hoping there is somebody out there to talk to. My husband was diagnosed in November 2001 with MM, had 5 courses of chemo, then two in-hospital treatments to prepare for autologous stem-cell transplant. It was discovered in the middle of the transplant procedure that the earlier chemo had killed most of his stem cells so the transplant did not go forward. He was put on thalidomide and has been doing well on it since July. He has some numbness of feet, tingling fingers, has also been diabetic which doesn't help and has developed some tremor and difficulty with walking but he works and does almost everything he ever did. I am very distressed about his being unplugged from our marriage, as I call it. I cry more over the death of my marriage (28 years) than I do about the cancer that lives with us. He was 55 at diagnosis and I 48. I've read a lot of the posted e-mails and everybody seems to be very matter-of-fact about their illness and how they feel about it. Any encouragement from out there would go a long way with me. My husband likes to keep his head in the sand, which would not be my way were I the patient. I'm just glad he's still OK but the sadness does outweigh the positive things I should be thinking. Words of wisdom welcome...I'm all years. Thanks. cs
  • lasvegas
    lasvegas Member Posts: 2
    #4
    jpin said:

    Claire
    I am new to this discussion group. I was diagnosed in March of 1999, at the age of 45, with stagelll MM. I have undergone radiation to relieve the spinal cord compression due to fractures, 8 cycles of VAD, and a peripheral stem cell transplant. I have been in remission since April of 2000. I am unable to work. I spend a lot of time keeping in touch with friends. I have taken up scrapbooking, which is relaxing and enjoyable. My husband is afraid to get as close as we once were, because he's waiting for the other shoe to drop. That is the hardest part of all of this. I won't let that take over my life, however. I am grateful for this time. Every year in June, I have participated in Blood Cancer Advocacy Days in Washington, DC. Kathy Guisti, head of the MM Research Foundation, and many leading researchers speak there, and I find it to be very encouraging. I really feel that better meds are being developed to treat or beat MM. I'd love to hear from you.
    Joanie

    Hi Joanie,

    Good to hear from a long time survivor. It gives me hope to keep on going. I was diagnosed with a strange mm CD20+ (positive) and the guru in California Dr. James Berenson said I was not a candidate for a transplant as this is a slow growing indolent cancer that they believe they can control and I might look forward to 5-10 years of what would be normal life with little pain. Little pain means drugs to control them as I have learned and bone marrow biopsies every 3 months to find out what is going on. I am up for MRI of skull and entire spinal column very soon and then a biopsy. It will be the first time they have waited 6 months to do the bone marrow instead of 3 months. Although they are very painful I am nervous not knowing what is going on in my body and if the cancer is growing.
    I am 64 and find days are long and sad although many friends and children call. It is so difficult being so isolated not to catch whatever germs are going around and I have been doing projects as you do to keep busy. Mental state is the worst and hope this remission or whatever it is where no treatments but prednisone and zometa are happening are truly helping. Try to do my aerobic swim class almost every day as it makes a difference, but walking any distance is horrible for my back. Support group here is doing its best but not a lot of information given regarding this type of cancer. Mostly of the other blood diseases as leukemia/lymphoma. Do you know of any particular sites for interesting information?
    You can keep in touch with me if you would care to at sunnyskies@lvcm.com
    claire
  • Unknown
    Unknown
    #5
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