Calling all TNs
Comments
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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.
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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.
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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.
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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.
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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
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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.
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Just to pile on.
Stage2A - I did surgery first, then chemo, then rads. No one (doctors) ever presented any other sequence options.
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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!!
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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
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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.
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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.
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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!!
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Stef, will PM you.0
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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?
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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.
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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.
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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
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JLStacey, you had 8mm after chemo and surgery?
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Cocker, I'm so glad you said that about ally. I also have this gut feeling that there's another baby coming for her.
Well, it's official. BMX and DIEP on March 18. Somehow I'm feeling a little more freaked out now knowing that the girls' have a firm expiration date. LOL
And jlstacey, ignore that article! Our survival rates aren't as great as the majority of women who have hormone receptor positive cancers, but it's still not bad! It's a minority of us who get pCR, and I don't see the rest of those women having 'universally poor outcomes'. I wish people writing these articles would show some sensitivity.
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I did chemo first. During my BMX, there was 8mm left of my tumor.
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Jlstacey, I would do that study in a hot minute. I mean, UGH to do more chemo, but the platinum drugs seem very promising. I'm doing the Herceptin/NeuVax trial, but with very few HER2 receptors, I don't know how much good it is going to do me. But, I qualified for the trial, so there must be some evidence that it will help.0
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If I don't have a pCR at surgery (March 18), I'm pushing my MO to let me try one of the platinum drugs. I'm not waiting around for this thing to metastasize.
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Try the platinum! I had NO response to FEC (same basic as AC) but did have a 50% improvement on carboplatin and taxol!
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hello. I'm new here, most of my info in my sig. Just wanted to join my fellow TNs and say hi! I'm having my 4th AC on Monday.
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Hi redrock! I'm sorry you had to join us, but this is such a wonderfully supportive group that I'm glad you found it! (I'm almost identical to you in age and kid status--10 year old and 6 year old girls! LOL)
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Cocker - once again, you always know just exactly what to say. You're also an angel to this thread and site, and we're all lucky to have your support. I'm actually seeing a GI in a couple weeks, so hopefully I'll get to the bottom of this reflux once and for all.
Amy - I'm glad your surgery is in the books and you're one step closer to being done, done, done with treatment! I had a "Conquered Chemo" party, but have you seen the "Bye Bye Boobies" Parties? Lol. Lots of cute ideas on Pinterest. Because sometimes lightening the mood is a good thing!
Jlstacey - I missed your last post and just wanted to say I'm so sorry you had residual disease at surgery. As Amy said, a small minority of us will get a pCR, so I don't think it's accurate to say that those who don't have universally poor outcomes. If that were the case, our overall survival rates as a whole would be much lower than they are. Having said that, I would jump at that trial as well. I had dose dense Carbo with Taxol and although it was hard on my counts and hard overall, I got a pCR. However, I'm also BRCA+, so I'm not sure how that plays into the platinums acting on the impaired DNA, etc. Sending you hugs as you decide and gear up for surgery. Also extra hugs for the lung nodule follow up!
So lots has happened the last couple days. Very long story short, my PCP's NP had my CT reviewed again - she really went above and beyond for me. They did NOT see the nodule. So that made for 2 radiologists who saw it and 2 who didn't. My NP was quite irritated at all the conflicting reports and sent me to a pulmonologist for a deciding expert vote...the very next day! In fact I just got back from the appt. He pulled up my scan in the room and went over the entire thing with me. He said no matter how closely he looked, he couldn't find anything! He said he'll rescan me in 6 months just to be safe, or I can have my onc rescan at her discretion. But, he made the emphatic point that IF there's a 2 mm anything there, it is NOT causing me symptoms. He is, however, sending me for a pulmonary functioning test (breathing test) just to make sure chemo didn't do any damage to my lungs. No scans for that, just breathing into a machine. My NP is also sending me to GI who I see in a couple weeks. She wants at least a scope to find out what kind of shape my stomach and esophagus is in. She also had a nice heart to heart with me and I'm going to start an anti-depressant. I've avoided this route for so long, but I can't deny that I'm struggling. It's been a super productive 48 hours and I feel really good about moving forward with everything!!! And very, very relieved!!!
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OK, so call me gunshy but that is twice in two days that someone has referred to someone else as "an angel" and freaked me out. So many wonderful people here, we need another word!!! Scare me once shame on you...
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Mamiya - I'm so very sorry to have upset you!!! That was me that used that word and I wasn't even thinking. Please forgive me!
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No worries! It's just a symptom of the disease! Angel used to be a good thing, now it equates with death
I agree, Meadow and several others have been amazing in helping me too! 0 -
I never really thought about it, but angel does have s negative connotation now
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