Calling all TNs

Hello Everyone,

I joined a few threads suggested. They were helpful.

I completed my first round of FAC chemo 01/30-2/1. My results for HER2 did return as negative. I have two primaries in my left breast, however my diagnosis was discovered from a mass in my left lymph node.

The plan is to be aggressive due to this and family history.

I completed CT eye to thigh, PET, Bone scan, MRI breast and MRI brain to confirm findings before starting Chemo. I will have another PET after round 4. I start round 2 next week. The last few weeks were eventful, but I feel more motivated than ever to push through. I have experienced many emotions in a short amount of time. I was never really one to cry, but at first all it took was the wind to blow. But I believe tears help heal and build stregnth.

Everyone would say you have to fight this, but no one said how. I know fighting represents something different to each person, but now looking back over the past month I realized I am fighting. For me it is in getting up everyday, taking care of my well being, researching my dx, staying ahead of insurance billing, continuing to be involved in family activities, church, and every little thing from washing my face to going to work counts towards my fight. And I choose to fight.

Insideout2 - We are all with you in spirit as you move along the winding road of treatment. I like that you recognize that you are fighting by doing what you're doing. To me fighting the disease isn't restricted to doing Herculean feats of strength while on chemo, or discovering a revolutionary treatment on your own by doing research at the local library. In other words taking care of your health, self, family, and friends while facing down cancer treatment is heroic. You don't need to have some extraordinary story that they make into a movie starring Charlize Theron as you. You be you and that's hero enough.

A4ggy - I hope you get those pathology reports soon and that they are good news. This waiting period is mental torture. Did you do neoadjuvant chemo? If so did you get an MRI, ultrasound, or mammogram before surgery? If so what did those images tell you and your surgeon?

I'm in the waiting period myself for the results of my post-neoadj chemo MRI and Mammogram. I just had them yesterday and don't think I'll find anything out until Tuesday when I see my surgeon. My oncologist gave me physical exams every two weeks during chemo and says she believes the tumor is all gone, but never used the phrase "clinical complete response." I am so hopeful and nervous for the results of the imaging just to have something to hold on to until I get the final pathology after surgery. I'm almost afraid to hope for an ultimate pCR.

Does anyone that did neoadjuvant chemo have any advice about how close or different the post-chemo imaging compared to the final post-op pathology?

Thanks everyone for your support.

I wish the best for everyone waiting for test results.

Hi Paula

I would definitely ask, what is the 'goal' of the added xeloda? Is it to search out lurking cells? What will be the dose and what are some the side effects? Most of all how long? There is also a thread about xeloda with some that are taking it, after not having an optimum effect of AC/Taxol. Bottom line you have to be comfortable with the reasoning and weigh the added risks.

Hello LoveMyVizsla,

I have just read your post with interest as I like to keep up to date with everything. I was interested in what your oncologist said about pCR at 40% with ACT and the addition of a fourth drug bringing it up to 80%.Do you know the name of the drug.I would be concerned about another drug going into the body as three drugs are already a lot to deal with and make some patients very ill.

I shall be thirteen years since diagnosis in June this year. I have had no problems except lymphoedema this year.

Sending you best wishes,

Sylvia. x

Hi, Jane IDC, TNC dx July 2015, age 55 then. Had the usual chemo, every two weeks for 16 weeks. Finished 11/30/15. Had partial mastectomy 12/28/15. Started radiation on 1/19/16 and finished that 3/6/16. Had the usual follow-ups, all clear. Then in December 2017 I noticed a hard, painful lump where my tumor had been removed in 2015. I called the surgeon, they scheduled the diagnostic mammogram and ultrasound. Radiologist reports that they were clear!! I was elated and didn't give it a second thought until my surgeon was doing her usual exam and that spot was very sensitive to touch, she decided to do a needle biopsy just to put our minds at ease. Said it was probably scar tissue. Two days later she calls me and said their were abnormal cells and we should do an excisional biopsy. This was scheduled for the following Friday, she told my family all looked good. Then the phone call comes, IDC was found growing inside the scar tissue and we didn't have the final path as to whether it was HER2 or TNC. So, after the discussion we decided the next course of action was the bilateral mastectomy which is to be scheduled soon, and I plan on reconstruction with tissue expanders. Today, finally, I rec'd the news that it was once again TNC. I have to wait for the oncologist to call me next week as to the next step. I am sure it will be the dreaded chemo. I am wondering what some of you have done. I have thought about a clinical trial, however, I don't want to be the patient that gets the placebo. What have you done?

Foslerja, I'm sorry that you have such a cascade of news getting worse as it went along. I agree with moth. during a clinical trial you would be getting, at the very least, the current state of art treatment. Being in the placebo group would not mean you're getting nothing. I'm currently in the Tapimmune trial and what I've found is that you get very detailed, individualized, attention. At my site, Dubin in NYC, we get a lot of individualized attention, anyway, but there is even more follow up with a trial.

hi everyone, came from the surgeon oncologist today and was told a few things that worry me.

Was anyone here stage 3 that did neo adjuvant and was told it was protocol to have more chemo after surgery because of TNBC? i just want to know. i thought i was headed for rads after surgery but was gently told that there is a higher likelihood i go back chemo after surgery.

Hi, mkn86 - like kmajor I did neoadjuvant AC+T. I haven't had my surgery yet, but the plan is to do surgery, rads, then Xeloda. My oncologist really wants to get rid of all the scattered TNBC cells that might be in my body and thinks Xeloda will wipe them out.

Reading the posts regarding additional chemo after starting with chemo. I have 6 rounds of chemo. Just finished round 2 today. I am to have a PET after round 4 and if all is good, Surgery is the next step.

After reading the posts I have more questions I will ask at my next appointment. Thank you all for sharing.

SoniaL, I basically had a complete response (Thank God.) They found less than a mm left and it was too small to even test for anything. My drs were all thrilled and are treating it like a cpr. My dr did not suggest xeloda as she thinks it won't really help in my situation. I was wondering about your situation as you said you had a very good response and your doc still thinks it's a good idea to do it. Also, it's positive to hear that you have't found it too difficult so far. I should add that I didn't have any node involvement and they aren't recommending radiation either because I had a BMX. The radiologist said it would do more harm than good. I'm waiting to see if I can be part of a clinical trial and hoping that I can be. If I don't have the marker in my blood, then I can do xeloda although not recommended by doctors, and then I'm done with treatment, which scares the bananas out of me. Thanks for any input!

Flynn- thank you! I hope younfind something. I went on their website and just filled out a form asking for a call back. I don’t know how else to proceed. It sounds like you are in a good place. Best Wishes.

Rebekah

rdeesides-I don't have any experience with MD Anderson, but I have been getting a lot of my care at Stanford University Womens Cancer Center. My MO is there, and I had my surgery there and would recommend them to anyone who is interested. I just wish I lived closer.

SoniaL-thank you so much for your response. I had immediate reconstruction a month ago and am healing well. Waiting to hear about the clinical trial and then will decide if I do xeloda. Glad to hear the end is near for you. It’s such a strange feeling. As I sit here, I wonder “is it really gone?” They said it was but what if’s are scary thoughts!

Hello everyone, sorry that I have been away for a long time. Life goes on and is very busy. I have always wanting to come back and encourage others.