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idadome's Recent CancerCompass Activity

  • IdaDome has replied to a post on the message board

    Scott, Thanks for the good words.  I was diagnosed in July 2006 and have made it beyond the time that any of my drs. anticipated.  I've been told several times to "get my affairs in order" and yet I am still here.  The drs. and nurses often tell me they are amazed. So for those who feel hopeless, know that there is hope and take advantage of all the resources we have available to fight this disease. ...

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    • IdaDome has replied to a post on the message board

      I've met with the specialist at MD Anderson and he agreed that it is time to change.  They have a couple of new trials (mostly Stage 1) - combinations with carfilzomib/ panibinostat; ARQ; or ARRY/carfilzomib.  I've not had carfilzomib yet.  I was trying to remember bendmustine when I was talking with him but couldn't remember the name. I still need to meet with the folks in NYC - that's scheduled for ...

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      • IdaDome has replied to a post on the message board

        I also lost around 60 pounds the first few months after being diagnosed.  Is he getting the Velcade via IV or subcutaneously (under the skin)?  Many patients report that the side effects are much less with the subcutaneous injections. Otherwise, there are many options for other treatments.  Revlimid has been very effective along with a number of others. Hope he begins to feel better soon. Janet in I...

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        • IdaDome has replied to a post on the message board

          When I was diagnosed, I had high calcium levels.  But I also had a lot of other problems including my kidneys shutting down.  One of the big concerns with high calcium levels is that it can have effects on your heart.  It can also effect your mental status. I did feel really crappy during that time, many of the same symptoms you mention, but I'm not sure what caused what.  They got my calcium lev...

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          • IdaDome has replied to a post on the message board

            Anna, Sorry to hear that your Dad is having more problems.  Hope that they can get this under control and he can come home soon. Janet

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            • IdaDome has replied to a post on the message board

              Susan, That's great that you have done so well with your SCT.  I hope you continue to improve and feel well. I had an auto SCT in 2007 -- about a year after I was diagnosed.  My results were not so good and we were barely able to get enough stem cells for the one transplant after 6 rounds of pheresis.  So a second transplant is not really an option. My other treatments have been:  thalidomide; ...

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              • IdaDome has replied to a post on the message board

                Deb Jr. Thanks for the offer.  I'll keep you in mind if anything comes up. I go to Weill Cornell - they were located in the NY Presbyterian facility but have just moved to a new location about 4 blocks away.  This will be my first time at this new office.  It is on the East River just north of the Queensborough Bridge.  They have a nice walking trail along the river. I stay at the Helmsley Medi...

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                • IdaDome has replied to a post on the message board

                  Hop, Yes, I have heard about the ARI 500 trial.  I chose this other because it is an oral med and has allowed me to continue to live in Idaho and work as I can.  At least it has given me 6-7 months.  The ARI 500 trial would require a move to Texas for at least as long as it took to see if it is working.  Now may be the time for that type of decision. I'm scheduled to meet with the specialist at ...

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                  • IdaDome has created a new message board discussion

                    I'm in the middle of cycle 8 of the pomalidomide, biaxin and dex. clilical trial.  Numbers are going back up - 1000 (mg/L October), 1500 (mg/L in November) and, now, over 5000 mg/L iin January.  I'll do testing again next week to see if it has dropped any.  I see the dr. again the end of January and I'm guessing that I will be put out of the trial. Don't think they have other options to offer.  I...

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                    • IdaDome has replied to a post on the message board

                      summerluvr, I have been on and off and back on disability a couple of times.  They put me on S/T disability retrospectively back to when I was first diagnosed.  I didn't apply for it until several months later and didn't understand how it all works.  We have to use all of our sick leave (not vacation time) before we can actually start getting Disbablity Payments.  I had lots and lots of sick...

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                      About idadome

                      Patient
                      Multiple Myeloma

                      I was diagnosed with multiple myeloma in July 2006. I live in north-central Idaho in a geodesic dome home that I built in the late 1990's (thus my user name). It is in a beautiful, private location in the woods on 12 acres. We have lots of critters visiting (moose, elk, deer, bear, bobcats, coyotes, mountain lions, squirrels (red, douglas & flying), chipmunks, rabbits, turkeys, quail, doves, grossbeaks, grouse and lots of other birds). My picture is from late 2007 when we had lots of snow.

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