Calling all TNs
Comments
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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.
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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!
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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)!
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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)))))!!!
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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.
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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?
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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.
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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!
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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! 0 -
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.
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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.
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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. 0 -
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.
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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
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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!
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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.
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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
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Bummer about vaccine, im too far past treatment to be eligible. I will pray the results are fantastic and our TN sisters benefit from it during the trail period. Thanks for sharing.
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I had asked my Onco about adding the Carbo. I could only do it if I enrolled in a trial and received Adriamycin along with my Cytoxan and Taxotere. I see that there are several people receiving Carbo without the Adriamycin. How did those of you receiving it get it?
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Lou, I had carbo but my doc told me that the only reason I was able to get that was because of the "inflammatory" part of my diagnosis but he was certain that it was the most effective for triple negative all around. I wouldn't wish IBC on anyone so there must be a way for you to get the carbo/taxol combination? I was supposed to get AC AFTER carbo/taxol, so is that similar or totally different? I don't know. I can't imagine having AC and carbo together, seems like the side effects would be pretty awful!
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Mamiya, I don't know what combo. I heard the carbo was pretty toxic. How did you do with it? This stuff scares me! I had my surgery first so I don't know how they tell if the treatment is working. I see my Onco Tuesday. I have lots of questions
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I didn't do too badly, but it wasn't fun. I got it on Mondays and I was ok for the three days of steroids and then crashed hard on Fridays, felt pretty good on the weekend and much better the Monday following (I got the carbo every third week). I thought carbo was hard but that was before I had FEC - carbo was really easy compared to that mess.
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megomendy, thank you so much for the link!
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NYinshock - thanks so much for posting the vaccine info! I'm ineligible, but I hope others here are able to get in!
Radiology finally posted my comparative CT results on the portal. The 2 mm lung nodule is new, not seen on any previous scans. Tumor was on the left and of course the nodule is in my left upper lobe. Since taking the Zantac and Nexium, I've developed the ever slightest cough and chest tightness, which I'm praying it's some cruel joke side effect. I know I had a PCR...I know my onc thinks the nodule is nothing...I know they're commonly benign...and the meds do seem to help with the chest pain. But then I think...I have a new nodule in my lung on the cancer side...new chest pain...new cough...new tightness (especially in the cold weather)...and I'm smack dab in the middle of the highest recurrence rate timeframe. What else would be the conclusion???
My echo and abdominal ultrasound last week were normal. I follow up with my PCP Tuesday, but I'm not quite sure what else can be done at this point. I have to wait the 3-6 months (not sure what they'll recommend) before they'll look at the nodule again. I think it's too small to show up on on a PET and definitely too small to biopsy. I made the mistake of lurking on the Not Diagnosed But Worried board and found several threads where these single small nodules turned out bad. I'm so mad at myself for searching. I know better.
The real panic for me is because as most of you know we're actively trying to have a baby. My entire team gave us the green light to do so after treatment. My husband and I have talked this up and down and at the end of the day we feel like we have to trust them and not live in fear. But I worry we're being irresponsible. I'm grateful to be a "survivor," but I really miss my pre-cancer life sometimes. As always, thanks for listening. xo
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Oh, ally.
Of course it frightens you; it's completely reasonable after everything you've already been through. I was really alarmed when the CT during my hospital stay showed multiple 2mm areas as well as a larger (2cm x 3cm) nodule. They can say "we doubt it's metastasis" all they want, but when they can't identify it, of course it's alarming. I was also doing the little cough thing.Not that it's the same as my situation, but my follow-up showed great improvement on it and they decided it was an 'inflammatory process'. Something was working on me and caused this to show up when they happened to look. Otherwise we'd never have known and never have worried about it. It's apparently pretty common and they did say that it would be unusual to show up so quickly after nothing had been there before.
I'll pray about it, if that's all right, that this is nothing and disappears completely... and that you find out quickly. It's hard to breathe with that hanging over your head, I know.
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ally, hugs. I'm with Amy just try and breathe. Please don't go thinking down that path we all think. I am sure it's hard to believe your onco about the nodule. It just sucks that you have that chest tightness and fought with the reflux now. Hang tight and know that we all are here for you.
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I was able to get both kids accepted into Camp Kesem for the University of Michigan's 2nd session. The first session filled up btw Thursday and today!!!! It was already wait listed. We have nothing planned so kids will go August 15-20Th they so are excited!!! Luckily it is only 40 mins drive away so a short road trip
And FREE!!!! Since you know hubby is freaking about $ now. Guess the house won't be getting the landscape fixed this year. I call this place the money pit. Just moved in September and despite passing inspection we have already sunk a ton of $ into it. Hoping I can still convince him let me build my pantry before spring. It would make life easier and free up room in the tight laundry room. Plus put things where the kids can reach--and help me out more! SHORT PEOPLE PROBLEMS! I visit the Oncologist on Wednesday evening---should I be asking any specific questions? Is there any way to determine what day I should get treatments to minimize the bad days coinciding with kid activities?? WED/THUR and SAT are the busy days for us. They will finish up ice skating lessons in 2-3 weeks so Fridays will be free around the time I begin chemo.
We are having a Super Bowl party for my last shindig before chemo starts! Any popular recipes you guys like?? Living in Germany the last 2 Super Bowls made it hard to celebrate (game would start after midnight!!!).
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Amy - how scary! I'm so so glad they were benign. Thank you so much for your kind words and encouragement. I appreciate them so very much right now. And yes, I would love the prayers, thank you! xo
Shopgal - thank you so much! That's just it. If I had just the symptoms, or just the nodule, I might be dealing better. It's both that's making me panic at times.
I feel so silly for being amidst another scare. I wish I would've never gone to the ER that night. Grr!
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Ally, I'm so sorry you're scared right now but don't feel silly! My prayer is that you take comfort in the fact that your Onc isn't too concerned and you had a PCR. I know that's easier said than done since I'm the queen of panic. Take God's hand and hold tightly! We are here holding your hand as well. Always here for you! Also it's excellent news that your echo and ultrasound were normal. It's the little things, right? Although those two tests being clear are huge!Hang in there hon! Oh and my chest gets tight in cold weather too! Totally normal! (((((HUGS)))))
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Haus, I had chemo on Tuesdays, and I always felt ok that day, but not as good by Thursday. As far as your kids schedules, I think you will feel like getting them there, but you will poop out. I know you want to be involved as always, but don;t hesitate to ask with car rides, pick ups, etc. I had a mom tell me once, "all my kids remember about my chemo is me asleep on the couch" .This is ok! Rest when you can.
As far as Super Bowl recipes, I love dip. Cheese and rotel dip, Mayo/sour cream dip with bacon and tomatoes, onion dip, I could eat ANYTHING with a good dip! Have fun with your party!
Ally, I want to encourage you, and just wish I could find the right words. I feel in my heart that you are ok, that I know you are scared. We all have that fear of recurrance in the back of our heads, it is not easy to blank it out and live our lives . But this is what you must do....live. You did get a pCR. You are scared. You may one day get news that you have had cancer return. Try to focus on everyday things, everyday joy. I know you do, I can tell by your spirit that you do. This pesky node has your focus. I hope you and the hubby do continue trying to be parents .Babies are life, and your focus would be on life, not fear. Babies are good medicine. You should live your life as you want, not letting cancer rob you of every day, every desire for the future. Live the good life now while you have it. And if that changes, you can handle that too. We all have to try to live this way, yes?
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