Calling all TNs

jenjenl

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.

Lou53

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?

Mamiya

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!

Lou53

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

Mamiya

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.

CarolinaAmy

megomendy, thank you so much for the link!

Allydp

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

CarolinaAmy

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.

Shopgal2

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.

HausFrauMi

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!!!).

Allydp

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!

Luvmydobies

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)))))

Meadow

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?

LoveMyVizsla

I've only had one AC treatment so far, on a Friday. I felt great Saturday, Sunday and Monday, except for the constipation. By Tuesday I was tired. Meds took care of any nausea within half an hour.

Here is a recipe that all our friends and family love. And it is not as bad for you as say "Swiss & bacon dip".

Loaded Baked Potato Dip, but we refer to it as crack dip, because you just can't get enough. We like it with the Kellogg's baked cracker crisps.

HausFrauMi

I am definitely worried about the constipation. UGH it's my nemesis. Any sort of routine change or meds messes me up! And everyone says drink more water but it seems to have no affect on the situation. Those gentle over night pills---liars!

I am planning on buffalo chicken dip and pizza dip. The rotel one is always good-I made some the other day but added chorizo ground sausage. We have a specialty grocery store the next town over that has awesome spinach and artichoke dip

We have veggie straws--great idea for a healthier dipping instrument! I haven't seen a loaded baked potato dip before may have to try that! I've been pinning things that look good.

HausFrauMi

Geesh now the first surgeon I saw just called back saying I should do surgery first because stage 1 doesn't necessarily benefit from chemo neoadjuvant per studies. And chance the tumor profile will change and 25% of the tumors don't respond to chemo and then the tumor has more time to grow.....so she doesn't want to cancel my surgery date yet (Feb 9th) until I meet with the oncologist this week and see what he says. Good grief. Never expected to have surgeons "fighting" over me!! The cancer clinic nurse also said chemo first. I would just like to stick with 1 plan.

LoveMyVizsla

you can look at other people's timelines on here to see their stage and whether they had surgery first or second. I was 2A and had surgery first.

greenae

My docs at NYU also cited studies, and advised surgery first. It freaked me out waiting those 2 months from diagnosis til surgery, and I am glad I had the surgery, first. I started chemo 28 days later. And I am feeling Good one year out.

Hugs

Arlene

megomendy

Re: the CArbo, I had AC first then had Carbo and Taxol together for 12 weeks. I had some trouble with my blood counts, had to skip 2 weeks in a row and had a transfusion, but I actually felt pretty good on this. Bettter than on the AC earlier.

Peabrain

Just to pile on.

Stage2A - I did surgery first, then chemo, then rads. No one (doctors) ever presented any other sequence options.

anotherNYCGirl

Ally, - of course we all tend to think the worst when ever anything happens, but TRY to keep your fears under control. You are NED until told otherwise! My advice it to go ahead and try for that baby! You would feel like a new person, - and that would be one very lucky baby!!

ramprat

Haus, I understand how frustrating TNBC is.

I was diagnosed with stage 1 in July 2015 and found out that I am BRCA1 positive after genetic testing. I had one round of TC and then 5 rounds of carbo platinum every 3 weeks. Had my bilateral MX with reconstruction on 10th Dec 2015. My path reports showed no traces of tumor after surgery. I had no node involvement .

I think my decision in have chemo gave me confidence that the tumor completely shrinked !!! I suggest going to chemo first than surgery (personal opinion) though.

- Hugs to all

HausFrauMi

Exactly ramprat --I think for me- I like the idea of knowing IF the chemo works. And I haven't ruled out BMX over lumpectomy depending on how this all goes so having time to prep myself and family would be nice. Plus coordinate with plastic surgeon and pick what the new ones should look like.

Did/Does anyone else have low Vitamin D levels? This past year I have been anemic, low b12 and low vitamin D. I ran across a research report to today regarding tnbc and D and wondering if that contributed to my tumor?? I had a gastric bypass in Dec 2003. So my vitamin levels can get wonky. I am still down 75-80 lbs from surgery but 40 lbs over my goal weight-- darn pregnancies and low blood sugar! Obesity and beer/wine probably didn't help either.

jenjenl

i did chemo 1st and wish i hadn't. I would love to have confirmation the chemo was effective. At the same time if it wasn't effective and it grew or spread during that time it would have been a hard pill to swollow. Getting it out of me quickly was nice through! I think you have to collect facts and do what you think will allow you to sleep well at night.

StefLove

bluedog, did you start NeuVax yet? I'm meeting with an oncologist at Moffitt in Tampa next week to discuss getting into the trial. My MO here in Orlando knows her so set up the meeting. It's technically for HER2 negative, right? Not triple neg? She also mentioned there's another trial about to get underway that she's going to discuss with me but I haven't heard the name. tell me everything!!

bluedog

Stef, will PM you.

jlstacey

I'm looking at this clinical trial and I'm not even sure it is open. But, one of the locations is my oncologist's office, though my MO is not the investigator. The trial is for TNBC women who had residual disease after chemo. I did not have PCR, and it freaks me out a little bit. I had 8mm of disease left, which really surprised me. After my first two AC treatments, the lump could no longer be felt. Anyway, the trial is giving women carboplatin who are post-BMX and post-chemo, or you could just be observed.

http://www.cancer.gov/about-cancer/treatment/clini...

I meet with my MO on Monday to follow up on a lung CT which is following some nodules found last summer. Also, I want to talk to him about some head stuff- headaches, change in taste, one day with a weird brain buzz, and I'm thinking of bringing this study up. Part of me says I feel good, why knock that (although I'm having DIEP flap in a little over three weeks)? Part of me says do whatever you can to prevent recurrence. Especially since I just read something that says TNBC women who didn't have PCR have almost universally poor outcomes. That gave me some tears.

What would you do?

Allydp

Luv - thank you so much! I had to chuckle at "queen of panic." We might have to duke it out for that title! But you're right...it's the little things and as of right now I've got some good clear scans under my belt...and that's definitely huge. Thank you for reminding me to hang on to that, and to God as well. xo

Meadow - you are an angel to me, to this thread and to this site.

Haus - love Veggie Straws! And I'm not sure if you're a coffee drinker or not, but that was my go-to during chemo to help with constipation. I don't drink it regularly, so one or two cups and it was sweet relief. But I didn't do it often because I didn't want to get dehydrated.

AnotherNY - that's exactly what I'm trying to tell myself. As of today I'm NED. I don't want to waste any more of my life on cancer so trying to start a family and living in the now, and in the 80-90% chance I'm going to live a long life, is what we've chosen to do. Thank you so much for your kind words and the vote of confidence in that. xo

To those deciding chemo or surgery first, my heart goes out to you. These decisions are never easy. As others have said, outcomes have been shown to be the same, so whichever you decide, move forward taking solace in that.

MoreShoes

CarolinaAmy, my MO checked the tumor markers in the beginning when it was clear that I had cancer. The tumor markers were saying that I was fine. So she decided not to check for them again since they're not reliable in my case.

Cocker_Spaniel

I had surgery first and I'm glad I did as I just wanted the cancer gone and I couldn't be sure it was or if it was continuing to grow or not especially as it moves quick with TN. I do wish I had, had a double mastectomy though but just for comfort more than anything else and to save getting a mammo every year.

CarolinaAmy I requested no tumour markers for me. I was such a basket case waiting for results that I decided they were not worth having on a regular basis. I figure I will soon know anyway if something is wrong or it comes back.

Ally you are right Meadow is an angel and I don't know what we would do without her. She is right we do have to live our lives the best that we can now that our cancer is gone and we will deal with anything else that comes along, when it comes along, and it may not even be cancer. Also reflux can give you a cough. I can sometimes feel the reflux in my throat a little bit and it does cause me to cough.

Ally I would never pick that you are irresponsible far from it. You are just plain scared about your nodule and does it mean anything for you and also your worry that a baby may not be in you future. But I feel one will be and once you hold that new bub nothing else will matter. I pray every night and feel in my heart that you and your hubby will have this joy either naturally or with your surrogate. Don't forget you have a PCR. Have you discussed having a gastroscopy with your doctor because this could put your mind at rest about the cough and pain that you get. It will rule out some of your worries. Keep going girl, try not to worry so much and relax more. Maybe even a couple of days away together will help nature take its course. I tried for seven years to get pregnant and finally it did and the same could happen for you God willing. xx