Calling all TNs

Rebekah and everyone,

Check this out that I just read! This is exciting....

https://www.eurekalert.org/pub_releases/2018-03/uo...

Janet

Thanks Batesburg, great news. On edge as my wife has her PET/CT scan tomorrow. Her ER/PR+ turned triple negative about a year ago with lot's of mets to spine. So far Xeloda has reduced most of them, but, you know, we live from PET scan to PET scan and always in fear of real bad news.

Beckham2, I am still in TX but my understanding is that having multifocal disease does not change the prognosis. I'm sure some people will chime in!

R

Thank you for all the new research and tests info. My surgery is 4/23, but I'm meeting with the surgeon on 4/4. I like to be able to ask good questions, and y'all sure know them!

Thanks, A4ggy! I'm still riding the high.

I saw my oncologist on Friday and she told me that after radiation my treatments are over. She won't be recommending Xeloda, neither will I go into a TNBC androgen receptor positive clinical trial my hospital is running. It's a little bit of a mental shift I have to make since I was assuming I'd be having 18 more months of some sort of treatment. Now I am in the "trust" phase, not the "actively fighting the cancer" phase. I think I need a little more time to get comfortable there.

Hope everyone is enjoying the weekend.

Hi, A4ggy - yes, I got a lumpecomy and will follow with whole breast radiation.

My oncologist told me that there was no evidence to support Xeloda's efficacy in people who got a pCR. Not that it would hurt, but that it might not benefit me at this point. Also, I have pretty bad neuropathy in my hands and feet still so she doesn't want to add another layer of SE's on me. This is where the trust comes in. After radiation they are releasing me into the wild again ;-)

Hello All

Had my six month checkup with the oncologist. All is well. She mentioned they are now adding Xeloda to Triple Negative patients as part of the protocol. It is done after surgery and before rads. I asked her if I would have benefited from it, she said the studies though promising, to her did not have a high enough percentage of staving off recurrence. Additionally I had complete PCR. You just never know. Previously in the US, it was usually given to metastatic Triple Negatives.

I'm encouraged how things are progressing for TN's. My second opinion Dr at MD Anderson concurred.

I don't think I could have taken a 6 or 8 cycle drug after surgery. Mentally.

Val

Marsha that is good news, it’s great to hear from you. I’m also feeling good and moving on from cancer. There are many days when I don’t think about cance at all.

Marsha and Scot, - so good to read your posts!

Happy Passover, Easter, and Spring to all here!

Hugs from NYC

aterry- was your shoulder pain cancer side? I started having shoulder pain during radiation on the side opposite my cancer. It has just started to go away a month later on its own.

aterry, ok that's good to know. I had some reaction to AC, but none on Taxol and it even grew on Taxol it seems. It's good you were able to get into a trial. I think that would give me peace of mind. If you find out anything more about the trial results, let us know.

aterry, vl22 and helenlouise, I am going through radiation now and have been trying to stretch my cancer arm, but have even considered the other side. I did some yoga yesterday to try and stretch things out but I will be more mindful that this can be an issue. Funny that the pain can show up post treatment. I wouldn't have thought that.

Rebekah

rdeesides, The shoulder pain was caused by a subconscious reflex to sort of hunch my shoulders forward--which is a protective thing we've all done, against a cold breeze, say. I didn't realize I was doing it. Then my pectoral muscles were tightened and the shoulder joint was misaligned which caused irritation in the rotator cuff area and in the biceps tendon. If I'd been aware I was doing it I would have done exercises all along. I'm doing shoulder rolls, supine shoulder flexes, shoulder flex at a wall, lemon squeezes with the shoulder blade muscles. These exercises are to reteach me how to use my shoulder and core muscles properly and regain range of motion. My cancer center has yoga classes that I have not been able to go to because of schedule but I wish someone had taught me the range of motion exercises going into radiation. I guess I can't expect them to do everything--they already do so much. Probably most people don't experience this problem.

Hello role models! I've been a lurker for a while and am so impressed with the care demonstrated between members. You are all remarkable and have been helpful to me by sharing your experiences through each phase of treatment. I'm hopeful one of you might have insight on IMRT (a type of rads) and insurance. From  diagnosis I knew radiation would be part of my treatment and now two weeks after my rads consult insurance denies the IMRT. I like my radiation onc and think he has a good plan but can't seem to get beyond insurance. My cancer is right-side, so protecting the heart isn't the primary concern for insurance. The radiation of all the lymph surrounding the breast is where I think the more target, consistent radiation will be useful. Any tips on how to convince anthem of this?

I’m 42 - diagnosed a week ago today.

Triple negative with Ki-67 of 92%

1.7 cm mass left breast

Mom of 4 - only two at home. Work inside sales from home

I have more questions than anything at this point but meeting with breast surgeon in a few days

I'm in a rough place tonight, fellow TNBCers, after meeting with my breast surgeon this afternoon -

1. While I got a significant reduction, I did not get a cPr. I have two small active cancer places in my right breast so need both a mastectomy and axillary dissection - the latter because my sentinel node was biopsied and was positive when I was diagnosed. The cancer had shrunk so much I had my hopes up for a complete pathological response. The two remaining places, "nasty spots" according to my breast surgeon, are much smaller than my orignal tumor: 5.8 cm to 10mm and 20 mm. She staged me as T3A and right on the line between N1 and N2.

2. My surgeon's office told me 4/23 surgery. Now I learn that it was her GOAL to have surgery that week. My daughter is flying over from Ireland 4/22 for one week. What's the chance that Delta will let her change that? Not much these days.

3. I had hoped to have DIEP flap done with my mastectomy, but now my surgeon feels I need to get an expander for radiation and have surgery later for the DIEP and reduction of my left breast (I'm DDD). My plastic surgeon said I could do the DIEP at the same time, but my breast surgeon says MD Anderson advises not to with TNBC.

4. This means I'll for sure have Xeloda and probably go on a clinical trial for Keytruda for Stage IIIB TNBC run by my MO. That means, assuming I can tolerate Xeloda and get in the arm that receives Keytruda, I'll be on chemo from Oct 2017 through the end of 2019.

I know, I know . . . it could certainly be worse. I'm just feeling sorry for myself tonight and wanted to vent in a safe space. Thank you for listtening.