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jazzmom
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| Joined: | Wed Jul 9th, 2008 |
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Posted: Sat Aug 16th, 2008 12:03 am |
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My mom (age 63 and WAS active) was diagnosed on 7/16/08. She was immediately started on 40 DEX and 1, then 2, then 3, Thalidomid. She has 50% myeloma in her bone marrow and lesions on her spine and hip, but was getting around pretty good, but always extremely tired. In one month, she has had one Zometa treatment, then had to be hospitalized for too low calcium. 2 - 2 unit blood transfusions, and a shot to help the kidneys build blood. She is worse everyday, so the doctor reduced DEX to 20 mg, and back to 2 thalidomid. She is on her first 8 days off Dex and he is saying she may not be able to continue this treatment as she is not really able to get out of bed. She has NO energy and can barely make it to the bathroom.
She is going downhill so fast, we are scared to death. Has anyone out there had this at first. the doctor tells us most people have tons of energy. We don't know whether to push to continue treatment, op to to the MP? treatment as doctor recommended or try and take her to Huntsman. She really isn't able to travel is the only reason we have not attempted to make the trip. She was dancing at my brother's wedding on May 31, 2008 and can barely get up on 8-15-08????
Any help? I would appreciate it. Did anyone feel this bad, but continued on. She wants to get well enough for transplant?
Worried sick?
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Annick
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| Joined: | Sat Oct 20th, 2007 |
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Posted: Sat Aug 16th, 2008 12:14 am |
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Hi jazzmom,
It really sounds like your mom's disease is getting progressively worse and that she's not getting adequate disease control from her dex/thal regimen. It is true that high-dose steroids tend to have an activating effect in most people, but only if the disease is controlled. If your mother's hemoglobin is low, or if there are other complications, that will override the effects of dex, and she will be in bad shape physically and continue to deteriorate. I would strongly recommend that she come to HCI for an evaluation and treatment. I don't remember exactly where she resides, but it is possible for us to look into transportation arrangements via medflight or angelflight services. Best of luck.
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jazzmom
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Posted: Tue Sep 2nd, 2008 05:39 pm |
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We would like to try and get mom to huntsman's. For some reason her BEtA 2 immu. number is back to 5.2 rather than the 12.2 she started with. She just feels kind of crummy. She is worried taking her to huntsman will ruin her care here. she hates not having a doctor where she lives to call and take her in at a moments notice as Huntsman's is 4 hours away?
Let me know what we need to do to bring her down to get a second opinion and get them to take a look at her records.
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Annick
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Posted: Fri Sep 5th, 2008 11:49 pm |
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Hi Jazzmom,
I was out on vacation earlier this week, so I apologize that I'm just now getting back to you. If you are interested in coming here, please feel free to contact our new patient coordinator, Debbie Coleman, at 801-587-4652, or via e-mail at debbie.coleman@hci.utah.edu, and she will walk you through the intake process. Most of our patients' local oncologists are amenable to working with our program physicians, and they continue to play a vital role in patient care. Therefore, I wouldn't worry about upsetting your mother's local doctor, because more likely than not, he/she will understand and will still be available to your mother to administer the treatment plan, answer questions or concerns, and follow her between visits to HCI.
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