tag:blogger.com,1999:blog-10193821.post6541173542954650053..comments2024-03-25T16:57:17.825-05:00Comments on Bostonmaggie: What's Real and What's Not RealBostonMaggiehttp://www.blogger.com/profile/17298341600851300309noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-10193821.post-68552200859074645912009-01-23T18:32:00.000-05:002009-01-23T18:32:00.000-05:00Absolutely!Have a fabulous weekend!Absolutely!<BR/><BR/>Have a fabulous weekend!BostonMaggiehttps://www.blogger.com/profile/17298341600851300309noreply@blogger.comtag:blogger.com,1999:blog-10193821.post-30018897180893311672009-01-23T15:35:00.000-05:002009-01-23T15:35:00.000-05:00I would very much like to meet you some day. This...I would very much like to meet you some day. This weekend, I am off to enjoy my QOL with the man I adore. Raincheck?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10193821.post-68707638757489137482009-01-23T15:31:00.000-05:002009-01-23T15:31:00.000-05:00Well there's a vote for dropping everything and ju...Well there's a vote for dropping everything and just monitoring my situation.<BR/><BR/>What are you doing Sunday? Maybe you could come over to my Dad's house and help me make my case.BostonMaggiehttps://www.blogger.com/profile/17298341600851300309noreply@blogger.comtag:blogger.com,1999:blog-10193821.post-16432734738258519532009-01-23T14:59:00.000-05:002009-01-23T14:59:00.000-05:00Maggie:I've seen you out on ACOR, so know you are ...Maggie:<BR/><BR/>I've seen you out on ACOR, so know you are getting some info from there. I don't tend to post on there unless I have specific info I need or want to give an individual person some encouragement. Since I know you from here, I wanted to answer you here (trying to get into social community stuff a bit).<BR/><BR/>My philosophy is pretty akin to what you are talking about -- this is about me!<BR/><BR/>When I was diagnosed, I had swollen fingers due to the cold. Something I had experienced for over 20 years with no diagnosis of anything. My PCP took some blood tests and, lo and behold, I got the diagnosis of stage 1 mm. <BR/><BR/>After a bunch of tests and talking to folks, I ended up at Dana Farber with Dr. Schlossman (whom we have discussed before). I went about a year getting monthly Zometa (due to diffuse osteopenia -- my bones are taking a hit from this), but when my IGA hit 2600 in December 2005, Dr. S. suggested some treatment as I was borderline "stage 2". <BR/><BR/>I opted for (did not feel at all coerced) thalomide/dex. Numbers slowly went down (supposedly a good sign -- slow movement shows "indolence" a good thing), but never hit "normal". I had chemo brain, manic dex days and peripheral neuropathy developing (the latter being non-reversible per all medical literature). So, when the PN started, I noted I wasn't comfortable with things. It was totally left up to me as to what to do. <BR/><BR/>I chose to stop everything after about 3 months (interestingly, the dex swelling of my legs started the week I made the decision to stop -- I would not have continued once that occurred in any case). In May it will be 3 years with my only treatment the zometa (which at 2 years I asked to be reduced to every other month due to its' "half life" and possible ONJ per the ACOR list and other literature). <BR/><BR/>My IGA has been rising (again slowly) since I stopped the thal/dex. Right now it is about the 2600 that I started treatment at the last time. But, it has been there for about 6 months. My blood counts have been slowly going down as well, but I am not yet too anemic (which will definitely be my call as well).<BR/><BR/>Bottom line: I am enjoying my life. The mm isn't affecting my daily activities and I am monitoring things. If the effects of the MM become such that I am unhappier not treating it, then treating it, I will do so.<BR/><BR/>If you are feeling fine and all your tests are fine, and you are being monitored....seems to me you get to choose when you want treatment. There aren't enough studies/statistics to say there is a "right thing" to do.<BR/><BR/>sgttoby (posting as anonymous as I don't remember my password for blogger....not chemo brain, just old brain)Anonymousnoreply@blogger.com