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Old 01-07-2009, 04:54 PM   #5
Joy
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Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
you guys are so quick

Thank you for the responses! I haven't been having a lot of pain, which I should've mentioned. Yesterday after weekly H, I had a smidge and then after checking the boards here, I started thinking about that. See, I question if H really still works and my doc keeps me on it again since the data shows there is still some benefit, which is fine with me really. I just got a little hopeful that the twinge I was feeling was maybe some efficacy (rather than the 17 pounds of dinner I ate last night)

And just to clarify some of my options, because I am always getting great advice here I should mention a couple of factors that may spark anyone's knowledge on these specifics-I really would love the feedback.

I am currently on Epi/Cyto/H/Z (2 rounds so far). This is after achieving stability with Gem/Carb, but my doc wanted better than stable as, and this is what scares the heck outta me, the last CT report indicated "stable, but extensive liver disease" in addition to high Alk Phos and High CA27.29. She did not want to lose a window of opportunity with stable disease that may get jiggy fast (which is what happened on TDM1 and why I had to quit-this was prior to Gem/Carb). So she wanted to pull out the old strong chemos, hence the E/C and it has been 8 years since I did A/C. And like I mentioned, I don't know if it is working or not, yet.

Prior to all this nonsese I had started H/faslodex following my ooph in May. I had had good response to AI's in the past (using zolodex for menopause) and we thought maybe this would work, but there was some creeping progression and the DM1 trial opened up so we switched. I would love to think that some dayI could do Fasl/H again. I only had the first couple of injections.

Radiologic interventions are always on my radar. I was told by a rad guy that I had 1 too many and a couple of too big lesions for RFA. The other discussion was SIR, but because of past lesions that have come and gone there is some cirrhotic tissue in the liver (any experience with this would be so appreciated btw) and the concern was damaging any good tissue i.e. maintaining reserve with a procedure like SIR. Cyberknife would be sort of a dream come true (used to be a house in Mexico, but...well, you know), but I don't think I am a candidate at this time. Again any knowledge of this would rock my world as I have had a hard time finding what parameters are needed prior to procedure.

Sooo here are some other thoughts in addition to my original post (to which I still welcome your feedback):

-Why can't they design a chemo to remove unwanted hair and preserve the wanted hair?

-I will be inquiring about the Her2serum test at my next visit.

-Besides living a clean life, how do I preserve the liver?

-Am I or could I ever be a cyberknife babe?

-Would SIR really cause that much damage?

-Is it possible to go from triple positive to triple negative, I mean really? Can all 3 switch? I know individually that has been assessed between primary and mets, etc. and we find that it can, but wow.

-I so wish a vaccine trial would come out kickin' hard for stage IV people (again another dream come true, replacing the one of a date with Eddie Vedder-although since I met Luca, I broke up with Eddie-he is handling it well).

And I have a bazillion other thoughts, but I will stop there as the children are starting to make each other crazy and are not getting out their homework as asked. So I switch gears from cancer researcher/pain in the a*# to the one who must know all in the subjects of math, geography, whale breeding grounds, atoms, 6 times tables, French, etc. Oh, and I guess dinner should factor in there as those people appreciate it when I feed them

THANK YOU, THANK YOU-i really love you guys!!!!!!!!!!!!!!

__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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