Calling all TNs

rdeesides

Today was a chemo day so please forgive me if I don’t make much sense. Chemo brain is real!

I read the linked article and looked it up on another TNBC website as well. The clinical trials required a HER2+ + or ++ to qualify. They are low expressing for HER2+, not a true TNBC. Those women wouldn’t normally get Herceptin, but the combo with Neuvax looks synergistic for them.

Those of us with true TNBC wouldn’t qualify and likely wouldn’t receive any benefit from that treatment. I was excited when I started reading it, but realized their use of TNBC was misleading.

Now I can count on one hand how many Taxol are left! Wednesday I have another PS consult. Really hoping the third one is the charm as I need to get a surgery date booked

CallieGirl - that makes sense. That is what I understood too, So exciting that you can count your Taxol on one hand. That's a nice feeling.

HockeyChick - Sorry you are here, but it does feel good to get started. AC was kind of hard for me, but actually in retrospect I think it was ok. Just took some planning on knowing when I would feel tired and as long as I allowed myself the time to rest I was good. All my off weeks were good too. Let us know if you have any questions! Between all of us I think everyone has experienced most side effects probably. Be sure to eat ice during AC. Mouth sores were my worst side effect the first round because I ate the ice too lazily. The next three rounds were ok because I was more diligent.

R

HockeyChick--

So sorry for your diagnosis. You can do this! I had a breast removed and 14 rounds of chemo. Hardest thing I've ever done. But I'm a true believer that if I can do it, you can too. YOU GOT THIS!

Hello Hockeychick

chiming in with others, get a script for magic mouthwash, it's fantastic on mouth sores. Also, I brushed and rinsed with Biotene(?) products. Between the two it really helped. I didn't ice my mouth. During taxol, I used frozen peas in a cooler for my hands and feet. It did help, though I wound up with a wicked case of neuropathy. Pushing 3 years out, no signs of neuropathy.

Rdees and others, those articles always reel you in when they throw TNBC in there, give you hope and then you see that it does not work on true TNBC cancers. Unfortunately the chemos are the front-line for us.

Ask away. There are those like me that had the kitchen sink treatment (4 chemos, mastectomy and 33 rads) and others with treatments between.

I'm doing really good now. Was it rough? Yes, but very doable.Not that I would want to 'do' it. These boards are a lifesaver, but stay in your lane.. I look for positive threads, and definitely don't lurk over to the later stage threads. Thats just my way. I was told to do so, by a 10 year TNBC survivor. It's true. I caused myself lots of anguish by following some that are/were stage 4.

HockeyChick, I was on Neulasta & still ended up hospitalized with febrile neutropenia. Just as a back up plan, I'd consider lining up potential cleaning staff for your home and figure out grocery or meal delivery etc. You might not need it but if you do, it's nice if you have it all researched already.

AC made me super tired. I could reheat food but cooking was beyond me. Taxol has been way easier (I pretty much feel almost normal in terms of energy levels) & many people report the same experience. So just in case, if AC feels harsh for you, just know that odds are it's not going to be like that the whole time.

Do join the monthly chemo thread for your start time. It really helps to hash it out with people going through the same thing.

I totally agree with Valstim about sticking to happy threads. I actually blocked certain forums so I never ever seen them. Stay in happy places!

Flynn, yah for b9 cysts!

New article on a computer program that might be able to predict which TNBC patients need which cocktail of drugs.

https://www.sciencedaily.com/releases/2018/06/180619141342.htm

Waving hello to you Sylvia and congratulations on such a big milestone.

Sending good thoughts to everyone. Special hugs to those in treatment.

Hi, LoveMyVizsla,

Sorry, I've spent minimal time on the forum the past couple of werks & missed your inquiry. My oncologist referred me to a Physical / Occupational Therapy clinic that has an ongoing relationship with the Flexi-Touch company.

I thought I would have to go to a local store that has wigs, compression sleeves, gloves, etc., so was pleased to learn that a Flexitouch representative could take my measurements right at the PT / OT clinic. Once the pump arrived, an employee came to my house to help fit the garments and show me how to use the machine. The financial impact of cancer has been devastating, but I feel lucky that I was able to retain good health insurance coverage through my former employer. They quickly approved the pump pre-authorization request.

Lyn

I was originally diagnosed E+ P- in March and was whisked into surgery for a right sided mastectomy 2 weeks later. I had only met with the surgeon at that point. Surgery went as well as I could have hoped. No lymph node or vascular involvement as well as clear margins. After that I woundup changing treatments cwnters as there was one much closer to my house where I could get my Chemotherapy. When I first met with my oncologist she's informed me that where I was only 1% E+ my diagnosis was actually TN. She also stated i should have done chemotherapy first butsince I already had my surgery we would move forward from there. I partially blame myself for not taking a minute to breath or look into anything. She sounded encouraged by my surgery results but seriously how could that have been missed? I've had 3/4 of my AC tx and will do 4 taxol. Most days I Am positive but it still botherS Me that my onc doesnt feel i need a body scan due to my surgery results. Should I be OK with this? I got my pcp to do a chest ct scan. ANd that was clear. It's been a whirlwind of emotions!! Thanks for reading....

I had surgery first too, but only because of my immune system. MOmwasnt sure she could get me through chemo. I did have a CT scan first though.

Hi all,

Just found this site. I'm now 68 and was diagnosed with TNBC a little over a year ago. I was T1b 0 node. Although my tumor was small and my chances were good, I was still encouraged to have 4 rounds of TC chemo and standard 15 rounds of radiation. After researching TNBC I found out that in one study years ago, T1 patients that did NOT have chemo did worse than T2 patients that did have chemo. No brainer for me! Chemo started June 13 2017 . For those who may be afraid of it, I have to say that it was not fun but not nearly as bad as my imagination. I continued to work through treatment and always kept active. I like to power walk every morning. Well, the first week after a treatment, I wouldn't call it a "power" walk, but I did keep my feet moving. Thing is, i felt SO much better by forcing myself out and about. Drink tons of water - really a lot. Flavor out that "chemo mouth" with lemon juice but keep drinking fluids. Don't worry about your hair too much. I bought a wig but wore it only once. I bought lot's of cute hats and big dangling earrings. That worked for me.

I'm now a year out . My hair is back, my energy level is back, I'm feeling great. I'm not 100% worry free 'cause I'm a worrier - just my nature. But, I threw everything they would let me throw at this thing and I have nothing to regret. I gave myself a very good chance of being around to meet any grand-kids I might have. Now, if only my daughter and her husband would just get to it!

Hi icecolady - nice to meet you & hear how well you're doing!

Icecolady, welcome! I’m so happy that your journey is going well!

Dear Sylvia

What an inspiration. Congrats.