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CourtneyD KY Member
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Hello everyone, (Iapologize in advance if this is too long - but we need help&I want to give you all the info I have - besides the time to take to read this could save my mom's life) My mom is 54 and has been surviving and fighting since 2003, high blood pressure, and a heart pacer - she first took Thalmide. Then went to Texas - MD Anderson Cancer Research Center - there she has bone marrow transplant there - her own - they used radiation, arsenic, and chemotherapy. She went into remission until 2006 In the cancer returned in 2006 - they tried a new medication Revlimid - the side affects were too much for her and they took her off of it. After that she had radiation done on her left femur/thigh bone and took Velcade - chemo drug for 6 cycles April 07-August 07 Stayed in remission after that for 15months - so we thought - it wasn't showing in the blood work - however she was still in pain - she hadn't recovered how she should have been and/or how the doctor's had expected. She was still having a lot of pain going up and down the stairs and/or walking at times. At the end of 2007 - she went to the hospital for pain - she had not been going to the bathroom, kidney failure. End of 2008 My Dad took her to the emerency room one night - turns out the cancer had began making holes in her ribs and one in her spine. Although the cancer was showing up in the blood it was in her bones. She has also taken Zometa, Aredia, Fosamax, Decadron. Recently she fractured her upper arm getting into the bed. The doctors think that another treatment would kill her - what do you think? The side effects from the treatments are hard on her. At the moment she isn't take anything. She's just on a lot of pain medication and has a pain pump. We're going to start taking Vitamin B12, Iron, Folic Acid, and Vitamin D. 1) Has anyone tried spirulina before? Is it good to use as a supplement? 2) Does wheatgrass help? 3) For the lesions/tumors in her bones - radiation? 4) What about minodronate? 5) Are there effective treatments and medications oversea that aren't allowed over here? 6) VAD - Vincristine, Adriamycin, Decadron (is that good?) 7) Bonefos? 8) Melphalan, Prednisone a.k.a (MP - oral pills 4-7 days/mo. I believe in God for miracles and I believe that He blesses us at times through people. Doctors say she has 6months to live - I know God has the last say. I thank you for your time and I appreciate you reading and your responses. Thank you! Peace, Miracles, and Blessings, CourtneyD KY |
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DougC Member
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CourtneyD - I don't think you're going to find the answers you're in need of here on a message board. From what I can gather from your post, your mom has relapsed and has kidney failure, a great deal of bone involvment, and her quality of life is going down hill. It's strange that your medical team was monitoring her progress by doing blood tests only. Were they not including imaging, bone marrow biop and urine? I'm just a patient, but I would recommend you find a Myeloma specialist who can answer your questions and possibly treat your mom. You're in KY; thus, you're rather centralized to some well known institutions. Of course I recommend the Huntsman (UT), but like I said, you have Duke (N.C), University of Ark, M.D. Anderson (TX), Mayo (FL/MN) and others. No matter who you choose, you need to get answers to your questions. No treatment sure doesn't sound like an option I'd want to consider...the disease sounds like it's progressing and her quality of life is really taking a hit. I get frustrated when I read where a doctor has told a patient another treatment would kill them. With so many treatments out there, did they define what sort of treatment they had in mind or were referencing? I would think if they can get her kidneys back, stablize the disease, at age 54, there would be some treatment options out there. Don't give up until you exhausted all options. Bottom line, I hope your family makes the decision that leaves you with no regrets. Best of luck to you |
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Annick Member
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Hi Courtney, Generally speaking, a single autologous transplant, especially one that is not followed by a maintenance regimen, is not sufficient to keep the myeloma in remission for a long period of time, and I suspect that's why your mom's disease progressed in 2006. With more intensive and prolonged treatment, there is a possibility that your mother may again experience remission and a better quality of life. I would not give up at this point, as your mother is very young and deserves to have no stone left unturned. Also, if I were you, I wouldn't focus on the supplements and treatments you listed (most of those treatments are considered outdated). Also, unless your mother has a plasmacytoma, radiation is going to be very beneficial to her and may make it very unlikely that she can collect stem cells in case another transplant may be in her future. I would recommend getting at least one other second opinion and looking for a center (like Huntsman) who will not give up hope on her yet. There are other treatments to be tried. Best of luck to your family, and please keep all of us posted. Annick |
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Annick Member
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My apologies -- I meant to say that radiation will not be very beneficial to her unless she has a plasmacytoma. Annick |
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