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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
Printed Date: Jul 06 2020 at 8:19pm
Software Version: Web Wiz Forums 12.01 -

Topic: Hi!
Posted By: k8e
Subject: Hi!
Date 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?

Posted By: sophie
Date 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 so we can talk 

I just finished chemo treatment and my MO recommends me to take pill to reduce ER( although mine is low).

Posted By: sophie
Date 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... 

Posted By: k8e
Date 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...

Posted By: k8e
Date Posted: Oct 05 2019 at 6:30pm

I didn't do MO was pretty sure I would test high so we went straight for chemo. What pill are you taking to reduce ER?

Posted By: sophie
Date 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?

Posted By: k8e
Date 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.

Posted By: sophie
Date 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 ?

Posted By: k8e
Date 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.

Posted By: sophie
Date Posted: Oct 14 2019 at 10:48pm
what is your plan then?

Posted By: k8e
Date Posted: Oct 14 2019 at 10:53pm
Going with Xeloda and mistletoe. What about you?

Posted By: sophie
Date 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...

Posted By: k8e
Date 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?

Posted By: k8e
Date Posted: Oct 15 2019 at 11:16am
I am getting mistletoe through my integrative doctor / naturopath.

Posted By: sophie
Date 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?

Posted By: k8e
Date 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.

Posted By: k8e
Date 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.

Posted By: sophie
Date Posted: Oct 17 2019 at 10:37pm
I am thinking of taking immunotherapy as prevention ... did you start xeloda yet?

Posted By: k8e
Date Posted: Oct 20 2019 at 10:08am
I did. So far so good.

Posted By: sophie
Date 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?

Posted By: sophie
Date Posted: Nov 25 2019 at 6:44pm
Hi, how is your xeloda and misotle treatment? I am thinking of you wondering if you have any updates? I am about to start and get a bit nervous ... any side effects from both drugs and did you start both together ?


Posted By: dono7392
Date Posted: Nov 26 2019 at 11:38am
Will your oncologist allow mistletoe? I have a holistic doctor who will give it to me but the oncologist says "no."

Posted By: sophie
Date Posted: Nov 26 2019 at 11:40am
why your oncology says no?

Posted By: k8e
Date Posted: Nov 26 2019 at 11:56am
Will post here today (also responded via messenger)


Yes, I started the Xeloda and mistletoe injections together. I started round 3 of Xeloda today.

The first round of Xeloda was unremarkable. Half way through the second round, I got very nauseous and vomited. I called triage and they suggested I start to take Zofran to control the vomiting and nausea. While the vomiting stopped, the nausea continued. My appetite decreased tremendously and I had occasional cramping in my stomach. I lost 3 lbs during the "bad" week of Xeloda. Once I stopped the Xeloda, things improved.

I had labs and follow up with my oncologist yesterday. She is not convinced that my nausea and vomiting was from the Xeloda since I did well the first round. My labs came back good - both red blood cells and white blood cells are coming back strong (I did infusion chemo first, then surgery, now Xeloda). Takes a while for those counts to come back from the infusion chemo.

I discussed the nausea and vomiting with my naturopath and she suggested a ton of remedies and supplements to help, so I am prepared if the nausea and vomiting comes back.

So far, no signs of hand / foot syndrome or diarrhea with Xeloda (which from what I understand are the most common side effects).

Re: mistletoe, I am doing well. I was nervous about injecting myself but its pretty easy once you get the hang of it. Typically, it takes a while to find the right dose / level of reaction, however, I got an amazing reaction at 1 mg (which is the lowest ampoule from the pharmacy I buy from). So much so that my naturopath advised me to try .5 mg (1/2 ampoule) and I am still getting a good reaction there. I believe the mistletoe is recommend for years, so good to get comfortable with it.

Posted By: k8e
Date Posted: Nov 26 2019 at 11:59am
dono7392: Thats disappointing.
Integrating other therapies was very important to me so I made sure that my oncologist was willing to work with my naturopath and integrative doctor.

Re: mistletoe specifically, she was fine with it. The only caution was that if my liver levels started to dive, she would want me to pull back on the mistletoe. However, so far, things are a-okay.

Not sure how important other therapies are to you but if they are important, you might want to find another oncologist.

Posted By: dono7392
Date Posted: Nov 27 2019 at 9:41am
Apparently the type of mistletoe that is used in Europe is illegal here.

Posted By: k8e
Date Posted: Nov 27 2019 at 5:23pm
Hmmm...its not illegal; its not an approved treatment but its legal.

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