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Any other 3N with Invasive Lobular?

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Terry3N View Drop Down
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    Posted: Jan 26 2008 at 11:04am
I have been wondering recently if there is anyone else on this site that has been diagnosed with triple negative bc that has also been diagnosed with invasive lobular.  It seems that I am the only one on the poll site.
 
I am trying to make treatment decisions and would appreciate anyone's experience or information.
 
Thanks,
 
Terry
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aaklwalker Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2008 at 8:41am
Mine is invasive lobular.  How is your treatment going?  What have you done so far?
Dx 1/06; Lt Rad mast 3/06; Reoccurrence rt lung; stage IV 1/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2008 at 9:20am

I was diagnosed 2/07 with invasive lobular 3N in left breast and mets to spine.  I had four rounds of FEC, PET showed no hypermetabolic activity, then 12 rounds of weekly Taxol, PET showed some hypermetabolic activity in both breasts.  I had a modified radical masectomy on the left with 28 out of 28 nodes positive, and a complete masectomy on the right with 3 sentinal nodes negative.  I am currently undergoing radiation to the chest wall, chest skin, and various lymph nodes under my armpit, clavical and chest bone.  The radiation oncologist wanted his own PET scan and that was just done and it didn't show any active cancer.

My question to the oncologists I am working with is, if the lobular cancer doesn't show on the PET scans then how are we going to measure it?  I have been seeing Dr. Cristofanilli at MD Anderson in Houston and he mentioned Xeloda after the radiation.  My local oncologist who has been following Dr. Cristofanilli's protocals says he doesn't like Xeloda and has seen bad side effects with it.  I am trying to figure out if I really need chemo if the cancer doesn't even show up.

What has your treatment been like?  Does your lobular show on the scans?

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Post Options Post Options   Thanks (0) Thanks(0)   Quote aaklwalker Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2008 at 9:49am
Mine is mets to the lungs now and it shows up great on the scans.  I am also being seen at MD Anderson by Dr. Theriault and Dr. Green.  I am on Xeloda (4 days now) and doing ok.  No horrible side effects so far. 
Dx 1/06; Lt Rad mast 3/06; Reoccurrence rt lung; stage IV 1/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry3N Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2008 at 10:01am
I am glad to hear that the Xeloda has been good to you so far.  I have been reading about Xeloda dosing and I think I saw some research that suggests that a lower dose then is the standard might have the same effect as the "normal" starting dose.  What is the dosage that you are on?  It is interesting that we are both seeing oncologists at MD Anderson. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kimd Quote  Post ReplyReply Direct Link To This Post Posted: May 20 2008 at 5:35pm
Hello girls,
               I guess I am 1 of 3...
 
I have invasive lobular and 3-....
 
I was dx in 7/07...at 38
 
I had 4x A&C every 2 wks
4x taxol every 2 wks
 
I had 30 rads from my breastbone to my spine, from my clavicle to about an inch above my belly button????  I also had 5 boosts for the incision site...
 
I am currently just holding my breath.  I am not having pet scans, my oncologist pretty much doesn't think it is worth it, he said it really doesn't show much???   the radiation oncologist and surgeon also agreed.  I am being monitered every 3 months by all 3 drs and also my primary care... they are all working together.
 
I haven't heard about the other medication you both were talking about, but I was told we are in a very small percentage with the lobular and 3-.
 
I had my 3 month after treatment with a mammogram and that was fine...Big%20smile
 
just waiting for some cures....
 
good luck, Kim
dx 7/07 at 38
Invasive lobular carcinoma
lumpectomy(double margins clear) sentinal node clear
A&C 4x every 2 weeks
taxol 4x every 2 weeks( bad reactions)
30 rounds of radiation
brca1-&2-
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