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Wanda
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Posted: Sun May 3rd, 2009 02:33 pm |
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I was diagnoised w/ MM past 11/08. I had clavicle bone 2" ate away 2 yrs. ago. Took them a yr. to diagnois. They just put me in P.T. for 8months. Mayo Clinic 2nd opion the biopsy. They said, cause unknown- yes, Mayo Clinic. I had to have rt. clavicle removed. The pain while in physical therapy was unbearable. I would leave there & have to stop on way home & throw up. I felt like I was going to a consentration camp each time I went. This lasted 8 months on my 5th. DR. before diagnoised.
I have lesions every where arms, spine, skull. One fracture after another in my spine. I only had 6 days of chemo, dexamethasone for couple months. NOW, I'm on no treatment at except pamidronate (for bones) once a month. They say, I'm in partiial remission but meanwhile bones keep fracturing every-where.
Sometimes I think, they're expermiting to see what happens without treatment, being I'M 68 yrs. old.
Appreciate comments.
Last edited on Fri May 29th, 2009 12:21 pm by Wanda
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dawg fan
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Posted: Tue May 12th, 2009 03:09 am |
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| Are you seeing a myeloma specialist? I don't know where you are but there are many sites that have myeloma clinics. Obviously if you are anywhere near or can get to Huntsman that would be great. The folks there seem great. I am in the pacific northwest and my husband is seeing someone at Fred Hutchinson. 68 is NOT too old to be treated. Please keep looking for better answers.
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Wanda
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Posted: Fri May 29th, 2009 12:35 pm |
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I go to u.of m. (MI) once month for check- ups. Same old thing each time, blood work-up, see the DR., and get bone feeder I.V last a couple hrs. that's it! Is this normal protocol?
I was sent to Orthapedic surgeon. I had 2 new fx. he wants to do Kyphoplasty surgery (cement betw. vertebras) I'D love to talk to someone who had this done.
Aways in a lot of pain if I do anything using the back muscles. Like to hear from a few who had this surgery.
Wanda
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dpcaregiver
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Posted: Fri May 29th, 2009 01:51 pm |
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Wanda,
My husband was not able to have kyphoplasty as the spine doctor he was seeing for back pain waited too long and his vertabrae (3 of them) were too far gone for it to be an option. He now faces some major back surgery to stabilize his back at some point. However, I have met and talked to several that have had it and swear by it. It can immediately lessen pain (like within an hour).
Even more important it seems to me though is the fact you are apparently not seeing a Myeloma specialist. I can't say enough about finding a specialist in "YOUR" field (Huntsman is absolutley the best). We had one oncologist tell my husband he had 6 months to 2 years November of 2008. We moved to Huntsman and are now looking at a 10 to 15 year median survival rate. We have met several Myeloma survivors at Huntsman--11 years, 8 years, 7 years, etc. I urge you to have a consult with them soon. Even though my husband didn't qualify for kypholplasty, his back pain has gone from a 7 or 8 last October/November to a 2 now with Huntsman's care. Another issue with Huntsman is, they don't send you from doctor to doctor. They are your TEAM, There are neurosurgeons, cardiologists, & orthopedic surgeons, etc. in the same complex that all work with Drs Tricot and Zangari to do what needs to be done for you throughout your Myeloma treatment. You won't ever be released "BACK" to another doctor without the Huntsman doctors being involved and consulting.
Good Luck to you, keep us posted.
dpcaregiver
Last edited on Fri May 29th, 2009 01:59 pm by dpcaregiver
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