Calling all TNs

Citrinetiff

May I join your group? Although I am not completely TN since my hormone status is ER- PR+ HER2-, I am being treated as though I were TN because of my ER-. My oncologist feels that my hormone status is so rare that I am closer to TN. I will be started 4 rounds of AC every 3 weeks, and then Taxol every week for 2 months. Is this the usual protocol for TN? He said that he feels this is a better and more aggressive treatment (my tumor is Grade 3, and my Oncotype is 51), and is better suited for TN patients.

Any suggestions are welcome, and I hope it is okay that I post here.

Citrine.

Mamiya

citrine, of course! You are welcome! The treatment plan you have described sounds very much like what many here have done. Wishing you all the best and look forward to following your progress as you go through treatment and beyond

Ag23

Hi Citrine,

I may be similar to you. I have triple negative, but but PR receptors were estimated at 30% when I had my biopsy. They gave me the standard TN treatment - ACT chemo.

Ally

Citrinetiff

Ally, Notdoneyet, thank you for the welcome and the info. I am just waiting for the hospital to call me to tell me when my first chemo is, and I will also be having scans (bone, organs, etc). The onc doesn't think there is anything to worry about there, but he wants a baseline. Has anyone else done that?

Shopgal2

Ag so sorry chemo didn't work yet for you. Tn is nasty and stubborn. I hope that surgery will go easy for you. I am a DD and if I need to do mx in the future I would do bmx. And you will be able to pick up your little one again.

I got a response back about my job. I was offered a lesser position at same salary. What sucks is it isworking for someone for used to be my assistant a few years ago and this person was very confrontational towards me then. I did ask human resources if I could possibly work for someone else due to the history and am waiting for a response back from them today. Meanwhile my doc wrote my return to work for 1/18 and I am in a holding pattern now. And no pay this week because my Ltd pay ended as of my return date. This work thing had me so upset that I am not sleeping, can't keep food in and have lost even more weight because I am just not hungry. arrg, stress is not good for bc. I need a break.

To make matters worse I had some jack off almost side swipe my car on my way into the city for rads yesterday. Jerk rode my bumper then passed me on the left and almost take off my bumper and mirror. I thought at the time that he missed my car. Nope. Went food shopping last nite for the blizzard coming and saw a soft swipe on my front bumper. Like I need this crap now too? Went to dealership this morning and they quoted me $600. I didn't want to turn into insurance as my deductible is $500. Then I went to a place my brother in law takes his cars to that said to let them try to buff it out. Turns out it could be buffed and they didn't charge me. Owner had someone in his family that had bc and chemo, rads so felt he needed to help me. I was crying I was so happy. Nicest thing that happened to me in this shitty week.

jenjenl

carolina - no markers here and I'll never know if they'd be accurate since we didn't do it from the start with the tumor still there i have no baseline.

bluedog

Ally, it totally sucks that your tumor isn't responding to the chemo. Mine did, but I didn't get a pcr (autocorrect tried to put in "prize" - hah). I hope you can get carbo. I asked my MO about it as I was finishing up chemo, and he said It was still being tested. But I've also seen people on BCO who seem to be getting it without being in a trial. Speaking of trials, I'm in one too. Testing NeuVax, a BC vaccine.

bluedog

Notdoneyet, sucks that chemo didn't work for you, too! I hope your trial goes well.

Mamiya

Thanks Bluedog, it's been a lot of running around and not nearly finished with that before I even start the trial! The crazy thing is that I think taxol and carbo did work, but then being on FEC (which didn't work) gave the beast time to come back in the skin and lymph node - the pet scan says nothing about the breast except for the skin! Arggggh!

The good news is that I should get my hair back. I think I will keep it short because I have a sneaking suspicion that I may have another dance with taxol at some point, but we'll see, maybe the trial will be a smashing success.

Citrine, I had EKG, bone scan and CT scan before initial chemo to get a baseline and check for mets, that seems to be pretty standard (some people get a PET scan but not many).

Meadow

Citrinetiff, we are glad to have you with us, sorry for the reason. We hope you find tons of info and support here!

Notdoneyet, I have found short hair to be the best thing ever. So much easier, and I would not have gone this short if it were not for this whole journey, One good thing!

Meadow

Shopgal, so nice for them to get your car fixed, I love stories like that. As for your job, I hope you get to work in another area. If not, you are not the same person as before. Cancer and treatment has a way of making us tougher, and I suspect your former assistant/now supervisor will see that you are not a target for their bull crap. Hang in there.

Shopgal2

thanks meadow you knew just what to say to make me feel better.

megomendy

Ag23, I had carbo added to my taxol and I am not BRCA+. I did have to ask for it though. A study had just come out at ASCO (?) the month before with good results for TNs using carbo, so my MO added it.

LillieRose

Ag23- my heart hurts when you talk about not picking up your babies. My little girl was 8 months old when it was time for my surgery... I remember meeting with the PS and he said 8 weeks at least until I could hold her... I left the hospital sobbing. It's so hard having cancer but having cancer with the baby is harder. You can't just think of you because you have a little person who needs you. For me I couldn't give up holding her. Cancer had already taken enough from me and missing that time wasn't going to happen. I had a BMX with no recon. I couldn't pick up Lillie (my daughter) for 1 week. Once I got my drains out I had NO weight restriction. Of course I was sore and carful but I could hold her and feed her. It's the implants that give you the limitation. When you have no recon they don't cut the muscles... I'm 6 months out from my BMX and still going flat. It's really not bad. I'm glad I don't have breasts to worry about... I could go back for recon because I was able to slip rads due to my Pcr but I don't think I will....... It's a very personal choice so think it over and talk to your docs!

I was in the Cisplatin/rads trial your taking about but was kicked out after my pcr. Talk to Dr. Jennifer Bellen. She runs the trial and is amazing! She will help you if she can. I really trust her and was so comfortable with her. 💛

Amy- I had a tumor marker test right before treatment that came back normal... While I clearly had cancer. They are unreliable and the standard follow up testing doesn't recommend them. I wouldn't worry about it.

I hope everyone is going well! It's freezing in boston! But i love the winter! Hoping for some snow soon!

Mamiya

I changed my screen name (no longer NOTDONEYET) because I was feeling like I will never be done (just starting a two year clinical trial)!

Luvmydobies

Mamiya, I like the new name! It's like a fresh start! You will be done! We are here with you and I'll pray for you daily! Hang in there! (((((HUGS)))))!!!

Ag23

Thank you all for your kind words.

I'm feeling like this is all out of my control now, which is not a comfortable feeling. As I mentioned, ACT chemo did nothing for me (didn't grow, but didn't shrink either). So, as of yesterday, we are skipping the last round of Taxol and moving up surgery (Feb 4). Since my tumor is still quite large (2.5 cm) they are dong a mastectomy. The are only doing the right side because (1) I'm just rolling off chemo (2) they want me to heal faster so I can get rads faster. That's a little difficult for me to mentally process (only having one breast for a year), but I guess it will feel good to get the tumor out. My main concern is that there should be more chemo in more future, but I won't know if it's effective since the tumor will be gone. I asked to get Carboplatin before the surgery, but my MO and surgeon decided that going straight to surgery is best. Should I be concerned about this? Should I push back? I feel like I've voiced my desire to do Carbo before surgery, but they just don't want to go that route.

Mamiya

Ag23, I don't know what you should do but I do know that you need to feel good about the course of your treatment. That they "decided" worries me, you need to make the decisions, they should only be recommending to YOU. Have the docs given you a reason why they don't want to try carbo? The thing that would worry me, as you've already identified, is that adjuvant chemos are as likely to not work as neoadjuvant but how would you know after surgery? The tumor is a sign post for what is or isn't working so once it's out can they even know?

Luvmydobies

Ag23, at the time I was diagnosed which was only three years ago, they gave me the option of surgery or chemo first. I didn't know much about TN and I was in freak out mode at the time so I did the surgery first thinking I want the darn thing out before it multiplies! Ugh. My breast surgeon, who has been around a long time, said there was no difference in survival rates whether you had chemo or surgery first so I did surgery. Sometimes I regret that but I have to live with the decision that was made at the time and trustedmy surgeon. I would say take a little time to think on it. I know a TN survivor who's been cancer free for 18 years and she had surgery first and they didn't even have Carbo at that time so she got the standard A/C and Taxol. She also had a lymph node involved. I also have a friend 20-21 years out who had the same. Not telling you this to try to get you to do surgery first but to just let you know there are some positive outcomes.

LillieRose

ag- I forgot to mention a friend I made while going thought treatment at DF had the same thing happen! She had to stop chemo and go straight to sugury, they said the tumor was growing! She's a young mom also (she has 2 year old twins and at the time a 7 month old) She felt like you did....out of control. After her surgery the path report showed that the tumor had swelled and was dying from the outside in! The chemo was working they just couldn't tell from feeling/imaging! Don't lose hope!

Ag23

Luvmydobies, I LOVE hearing stories like these. THANK YOU for sharing - truly, it has given me a better outlook for today. It's so hard to be hopeful some days - I know we all know that. I know we're all terrified to some extent. That's why I appreciate everyone on this board that takes the time to write TN newbies like me - people that are still going through treatment and are having a hard time seeing the forest through the trees. Sometimes I feel like a warrior, and sometimes I just want to cry. Hearing stories like your friends helps me realize that there can be a positive outcome. I feel like I don't even know myself anymore - I was always known for having a smile on my face and an upbeat personality. Hope to get that back - perhaps I'll see that reemerge when I get my bright boob back ) Ha! Thank you all for being there for me - responding to my posts, etc. You are all a terrific support system!

Teka

I am now completely over a pesky cold.

My last TNBC treatment was March 17, 2011 and no longer have any up to date knowledge of BC treatments.

I enjoy keeping tabs on the Oldies and getting to know the Newbies by lurking!!

CarolinaAmy

Citrine, I'm sorry you had to join us, but you are in good hands.   And yes, the AC+T is the standard treatment for TNBC, so it sounds like you're being handled just like most of us.

Meg, do you happen to have a link to the carbo study? I keep seeing women who have this who aren't BRCA mutation positive, and I want to make sure I have explored every option.

ALHusband

Ag23 my wife had cisplatin and taxol and there was never an issue with insurance. She is BRCA2 positive but that was not known at the time chemo started so that didn't come into play as far as what insurance would pay for. She was not in a clinical trial either.

Allydp

Mamiya - love your new screen name. Sorry to hear you're also dealing with GERD, especially the nighttime stuff. I haven't had that, but it definitely sounds scary.

Luv - My heart goes out to you regarding your Cdiff history. I've known a couple people who've had multiple bouts and they have similar feelings. So please know you're not alone.

Amy - my MO doesn't run any breast cancer tumor markers, but my gyn onc who performed my BSO/hyst and manages that end of the BRCA stuff for me runs CA125 every 6 months. It's more of an ovarian cancer marker, but mine was elevated with breast cancer and came down post treatment. So my gyn onc likes to run it not only for the ovarian side, but also because I have what he calls an "established pattern." So if it jumps he'd be more concerned of a breast cancer recurrence.

Citrine - although we're sorry you're joining us, we'll always welcome with open arms! I had a chest/abdomen/pelvis CT as a baseline, which lead to a questionable finding. I then had a PET to determine if it was mets or benign. Fortunately it was benign.

Shopgal - love hearing you were able to get your car fixed and keep your current salary!! That stinks about having to possibly work for someone like that though. I'm glad you went to HR. I hope they're able to accommodate something. But as Meadow so eloquently said, you have a thicker skin now and she will see that.

Ally (great name by the way although my name is Alicia and that's what I go by in real life) - if it's any consolation, my MO made it very clear from the start that if my tumor wasn't shrinking they'd get me into surgery ASAP. So I think that's the standard of care. I check out the studies from time to time and seem to remember always seeing something for poor responders. I would definitely talk to your medical team about finding something post rads. I'm not sure what's available at the moment, but even if you don't have luck finding a study, it might not hurt to see if your team is willing to add chemo (such as Cisplatin or Carbo) after rads outside of a trial setting. I'm sure they'd want to weigh the risks vs benefits, as additional chemo would be a big decision. But if it's something you feel you might want to explore, you could always seek additional opinions. It all comes down to your insurance approving the drug. So if you can find a prescribing onc, and your insurance covers, a trial isn't necessary. Just a thought as to other possible options. Again, I'm so sorry you're facing these decisions and situation. Continued prayers for you and hugs.

jenjenl

i was about to say the same thing Ally. Probably the tumor is resisting get it out before it grows/spreads and hit it with rads. I did UMX, then chemo then rads. I did one breast too to recover quicker to get to chemo. I didnt have carbo.

HausFrauMi

I was diagnosed IDC last week. I found out this morning I get to join you guys. I am ER-/PR 2%+/HER2 - after FISH and the current plan is chemo then surgery. Surgeon is treating me as triple neg. Waiting on genetic testing to determine what surgery I will have. Chemo to start after Feb 3 when I meet with the multidisciplinary cancer team.

My parents are really pushing my going to a cancer clinic somewhere. But I don't feel at this point it's warranted. And they are already a bit freaked out that they don't remove the cancer first! Hard to explain sometimes that technology and treatments change! And they did a quick search on TN and probably didn't help matters. Most of the articles or research studies I've seen have been geared towards stage 4 mets.

I have a 7&9 year old at home. Little red headed punks!

Nice to join you all

Shannon

CarolinaAmy

Hi Shannon! I'm so sorry you have to join us, but this is a great and supportive group. Please persuade your parents to stay the h*ll off Google; everything about TNBC is doom and gloom, and we really hate that. So much of the information is outdated and none of it relates to our specific case. It'll scare the daylights out of them without sharing anything helpful.

I have a 6 and 10 year old at home, so I know what it's like to fight this thing while trying to manage a family! We'll stick together!

NYinshocked

I want to update all uour newbies on the TN vaccine trial conducted by Mayo clinic. I got some valuable information from the coordinator. I'll summarize below-

1. The vaccine trial will start next few weeks, enrolling 280 patients. 2/3 will get the vaccine, it will be once a month for 6 months, then once every 6 months until recurrence or volunteer dropout.

2. It will be all 3 sites of mayo clinic with potential 12 more sites. TBD

3. Need to be stage 2b or 3. Patients with Chemo before surgery with a PCR are not eligible.

4. Need to be NED currently. The vaccine need to start within 60-180 days of completion of initial treatments, for most of us that will be last day of radiation.

Will update with more information once I get them.

megomendy

NYInSchocked,

Great info on the vaccine trial. So I am stage 2A so I guess I wont be eligible right now. Hope some of our fellow members get in. Sounds promising.

CarolinaAmy, here is a link to the ISpy study that determined good results adding carbo.

http://www.ascopost.com/issues/february-1,-2014/addition-of-neoadjuvant-carboplatin-in-triple-negative-breast-cancer-supported-by-sabcs-studies.aspx

http://www.medscape.com/viewarticle/817820

http://meetinglibrary.asco.org/content/147117-156