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k8e View Drop Down
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    Posted: Oct 04 2019 at 4:04pm
Hi everyone,

New here. I was diagnosed in Mar 2019. 42 yo. Genetic testing came back normal - no BRCAs. Early pathology showed Stage 1, 1.9 cm tumor, ER- PR slightly positive and HER2 negative. My treatment team said that was very uncommon and suspected triple negative. Started chemo right away (ACT), dose dense, 4 months (4 AC and 4 T). MRI showed tumor was smaller after chemo (1.9 dimension shrunk to .9). Went into surgery - double mastectomy. Margin was clear but on the small side and my breast surgeon wanted "more of me" so we went back in to get some more tissue. Pathology came back and tumor was about half the size, confirmed triple negative and cancer was still there, margins clear, nodes clear. They are not recommending radiation since no node involvement.
Regrouped with MO on Wed and she is suggesting Xeloda for 6 months or a clinical trial (OXEL) which is looking at Xeloda, Xeloda + immunotherapy and immunotherapy alone.
It's been a rough 2 days. While I knew there was a possibility of "residual disease", the reality of not getting a PCR is really scaring me.
While they consider me cancer free, there is a possibility that there are tiny microscopic cancer cells left and the Xeloda should take care of that.
While the trial is interesting, I am worried that there is a 33% chance I won't get the only treatment that might help me. Not sure I am willing to risk that. And, I was strongly considering to start mistletoe injections and if I join the trial, I would lose that ability.

Just feeling down right now. Something about surgery felt so "definitive" and I was really hoping for that PCR. The fear of this coming back is really hitting me hard right now.

Glad I found this site. I am leaning towards Xeloda with my MO and passing on the trial. Any advice?

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sophie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2019 at 4:32pm
Let me give you a hug first. 
I have simply experience, stage 1 ,1.3 cm, no node involved... biopsy shows slight positive in Er, and oncotype shows slight ER positive. Since no node is involved , Did you do oncotype and what is your score? 

I did sugery first and ACt chemo... did you hear of Keytruda 522 which is a clinic trail that good for early TnBc? My email is xiaodongbi69@gmail.com so we can talk 

I just finished chemo treatment and my MO recommends me to take pill to reduce ER( although mine is low).
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sophie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2019 at 4:43pm
Which hospital are you in? I heard people saying xeloda not always working and latest Breast cancer conference in Barcelona indicated immunization therapy benefits earlier stage TNBC patients. 

I am debating myself if I should go in the immunization therapy to prevent it from coming back... 


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k8e View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2019 at 6:28pm
Hi Sophie!

Thanks so much. Haven't heard much about the Keytruda trial. I got the OXEL and Xeloda info earlier this week so a lot to take in. Unless I go in the trial, Xeloda is the only treatment MO can offer. I think the trial is interesting although not sure about limiting supplements and other treatments I am considering...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2019 at 6:30pm
Hi,

I didn't do oncotype...my MO was pretty sure I would test high so we went straight for chemo. What pill are you taking to reduce ER?
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sophie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2019 at 7:23pm
Oncotype also indicates the ER level which can help clarify why seeing low ER and all triple negative in the pathology report.

I am taking AI medicine . Why your doctor is so certain that you have 3n and any effects explained to you on xeloda and immunization therapy, someone believe immunization therapy should have better outcome... 

Where are you treated, in Sloan?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2019 at 7:37pm
I am in Washington DC - GW University. Tripe negative confirmed through initial biopsy retest at GW and final pathology after surgery at GW. The progesterone mid came through my initial biopsy before getting to GW. 2 tests have confirmed triple negative at this point. Apparently, it would be very, very rare to be progesterone mid only...?

My concern with the trial is there is no guarantee...I could join and simply get Xeloda, both or immunotherapy alone. If I could get in and get both, would def do it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2019 at 8:21pm
Do you have PDL1 expression as which is benefit in immunization therapy... also, why you are taking mistletoe ?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 10:45pm
Not sure about PDL1.
Mistletoe is pretty standard care in parts of Europe. It boosts your immune system and can make chemo work better / minimize side effects. Hopkins is doing a trial now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 10:48pm
what is your plan then?
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k8e View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 10:53pm
Going with Xeloda and mistletoe. What about you?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2019 at 11:24pm
I wanted to try Keytruda 522 immu therapy
, xeloda , and later on do copper deletion ... where do you go to get injection of mistletoe? 

You are Not trying immunization therapy ? You can get both...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 11:15am
I donít think immunotherapy is approved for early stage unless through a trial. Were you able to get outside of a trial?

Edited by k8e - Oct 15 2019 at 11:15am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 11:16am
I am getting mistletoe through my integrative doctor / naturopath.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 3:21pm
Merck has the program to get the drug... I am just not sure about side effects ... what did your doctor say about the side effects on the immune therapy?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 3:34pm
My doctor was very clear that the idea behind the Oxel trial is that there is data showing improvement with immunotherapy and chemo for metastatic patients. Idea is that if helps metastatic, what about early stage? They don't know if it will help at this time. If you land in the non-Xeloda arm, you can do Xeloda after the trial. I think I am sticking with Xeloda; not sure I want to risk delay (trial could mean 6 months of trial and an additional 6 months of Xeloda).
Re: Keynote 522, read briefly and past that point in treatment, I assume its not an option.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2019 at 3:35pm
Oh, also re: side effects. I did check and immunotherapy does have side effects. The one I looked at is similar to most chemo used for BC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 17 2019 at 10:37pm
I am thinking of taking immunotherapy as prevention ... did you start xeloda yet?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote k8e Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 10:08am
I did. So far so good.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2019 at 6:03pm
is there a time frame when should we start xeloda after sugery or chemo is over? My doctor still asking me to wait after 1 month of finishing my treatment ... how long did you wait to have you taking xeloda?
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