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jagent
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| Joined: | Fri Mar 20th, 2009 |
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| Posts: | 1 |
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Posted: Sat Mar 21st, 2009 02:34 am |
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my mothers doctor suspects she has multiple myeloma. she has not been fully diagnosed at this time. know one in her family has cancer. no history at all. I do really want to know what r the latest treatments. all of her lab and scans are pointing in that direction. she is 76 years old and suffers excruciation back pain. she is anemic. recently went to the clinic for a blood transfusion. im a nurse and have no expertise in this area. Her doctor already has set up an appointment with her to see an oncologist. what are the right questions to ask her doctor? survival rates? some of these questions you may not be able to answer. but i'd like to have some understanding of this illness.
jmb
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dpcaregiver
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| Joined: | Sun Dec 21st, 2008 |
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Posted: Sun Mar 22nd, 2009 01:21 am |
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Dear JMB:
I'm sorry to hear of your mother's diagnosis. I expect the chat room moderator will give you some specific questions to ask your oncologist, but i would like to mention that, as a cargiver of a Myeloma patient, I feel very strongly you should seek a Myeloma specialist. One who knows Myeloma specifically and not just an oncologist. We first saw an Oncologist who gave my husband 6 months. We turned to Huntsman and now believe he has a very good chance at 10 or more years. he just finished his first of two stem cell transplants and is doing quite well. At the very least, get more than one opinion and check out the protocol at Huntsman before you make your decision about treament. These people here are not only fabulous doctors, nurses, etc. but they are kind, wonderful caring people. they are the "team" that are working together to save my husband. We have complete faith in what they are doing!
Good luck to you and your mother.
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Chat Moderator
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Posted: Mon Mar 23rd, 2009 04:04 pm |
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Hi JMB,
I’m sorry to hear about your mother.
I would say that no matter where you go, ask your doctor key questions about the treatment he or she proposes and how many patients who have been treated in that manner have survived 3, 5, 10 years, etc. Get some actual data on research findings on that treatment approach. Also, ask the doctor how many myeloma patients, specifically, he or she sees per year. This will give you a good idea of what kind of experience the doctor has with this type of cancer. If you’re not getting straight answers to those questions, try getting a second opinion.
At Huntsman Cancer Institute, we typically treat patients with tandem (two) autologous stem cell transplants coupled with maintenance therapy. Studies on this method have shown that half of all newly diagnosed multiple myeloma patients are likely to survive more than 10 years after the start of treatment. Meanwhile, the median survival rate of patients who receive treatment with conventional chemotherapy is generally three to four years, with only five percent of patients living 10 years or more.
Myeloma is an aggressive disease and it must be treated aggressively from the start. You want to make sure that the treatment a patient is getting from the beginning is the best shot at getting rid of as much myeloma as possible. Some less aggressive treatments that have not really been proven effective can actually hurt the chances that a more aggressive and more effective treatment would be successful later on. The body can build up tolerance to anti-myeloma drugs, so you have to use them in the most effective way possible from the start.
Getting your mother the right tests to determine the exact characteristics of her myeloma also makes a difference. It’s important to know about the chromosome features and the extent of the myeloma. Centers that specialize in myeloma can offer her more advanced tests like cytogenetics, FISH (fluorescent in situ hybridization), and gene array analysis that are not offered at all centers.
I hope this helps. Please let us know if you have any other questions.
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