Calling all TNs
Comments
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HausFrau- rock on with that hair!
Dr. Newman does TN research. Did you know that? She focuses on African-American/African women in her research, but she would be a great choice! She used to be at U of M. I didn't know about her when I selected my doctors but I did consider switching to her.0 -
Rock the hair, HausFrau!
And Ally, I'm so thrilled to hear that they can't find anything on the scans. That is wonderful!
Yep, another one with no scans. They didn't even do anything during treatment. I get one mammogram after I finish chemo this coming month, and that's it. No MRIs, PET scans, etc. They also don't run blood markers. I'll basically go in every three months, get my vitals taken, and get sent home for the next three months. I honestly don't really see the point when it comes down to it...
We're going out to dinner tonight, and I'm so hopeful that I might be able to taste something and enjoy some food for once. Our old babysitter (who has graduated college and gone on with her life) really wants to give us a night out as a way to support us through all this. Sweet, sweet girl. Hopefully this gets me out of the lousy mood I've been in all week.
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Amy, they will give you a thorough exam when you go in every three months. They will ask if you have any concerning symptoms and it will be your time to address those if need be. They don't do scans unless there are any symptoms they are concerned about. Let loose tonight and have some fun
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Thanks everyone. I'm relieved as well and looking forward to my GI appointment in a few weeks so I can knock this reflux out.
AL - you are too funny!
Luv - thinking of you! As you told me last week...as of right now you're NED! Acid reflux and stomach pains can trigger lots of anxiety, but you're STILL NED! I will say lots of prayers and good thoughts for Monday. I think these appointments can be such a trigger, so I'm sure that's not helping anything. I know I start to think about all my pains a little more around my checkups too. And I have the same thoughts about why things happen or don't happen...like maybe it means the cancer is back or coming back... Don't let your mind go there! That's just the anxiety talking! Hang in there. We're all with you Monday. xo
Haus - your hair sounds awesome! And great choice with Lisa Newman. I saw her when she was at UofM for a second opinion and really liked her!
Amy - thanks! How sweet of your sitter. Have a wonderful evening out, you deserve it!
No scans here either by the way unless investigating new symptoms.
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Hi! First time posting in the TNBC forum.
I am 34 years old, diagnosed September 2015. Stage 2B TNBC and positive lymph nodes. I am PALB2 positive. I was able to get a genetic profile of my tumor before treatment which showed many genetic mutations, of interest were PALB2 and STK11. My oncologist said that with the genetic markers of my tumor it was most likely made up of two different types of cancer, one that responded well to TAC and one that didn't. Regiment was to do 4 round of TAC, and if residual cancer left then do clinical trial of Cisplatin and Everolimus.
4 rounds of TAC was completed 12/29/15. A breast MRI and biopsy was performed about 3 weeks after. Roughly 80% shrinkage was shown, and some residual cancer. TAC preformed quite well, but not enough for pCR. The cisplatin is supposed to work well with the TNBC and PALB2 mutation, and the everolimus gets at the STK11. Treatment should start this week. Hoping that this clinical study will bring pCR!!
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Ally thanks for the prayers love! My husband swears I've complained about this before and nothing has come of it. But still, I'm nervous! I can't remember if I had it before my CT Scan I had last March which was clean or not. I had that done for left sided pain, and my GI is the one who ordered it. Anyway, thanks again for the support!
ajb, welcome to our wonderful group! Here's to tthe new treatment knocking the cancer out of the park! You'll be in my prayers as well as in many other's as well! Hang in there! 80% shrinkage is pretty good and it sounds like your doc is on top of things. HUGS!!
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hello ladies & gentlemen.
I need an opinion from you all. Or if any doctor has said yea or nay that helps too. I have not been taking the flu shot. This is the second year (this exact time) that I have gotten the flu. Do not recommend for weight loss but does a bang up job of it. How many of you get the flu shot? Any of your doctors recommend it? Please help me decide. I know it mine to make but your opinions are always so on point. I value your advice.
Luv. In your pocket tomorrow.
My MO does scans if I beg. She is aware of the mental side of this CRAP. (Notice Crap & Cancer both start with "C"). Need good words that start with C.
Maybe cute, anyone else got any good "C" words?
Thanks for any & all advice.
Marsha
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I never used to get the flu shot until I got lupus. Since then I get that and I got the pneumonia vaccine as well. I'm not old enough for the shingles vaccine, but I do want that when the time comes. I had a vicious case of chicken pox when I was a kid.
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ajb 12345 welcome to our site. Great, well not great you are here, but you know what I mean.
Lookingforw I get the flu shot every year. The only time I didn't get it was when I was having chemo and my oncologist said she preferred me not to have it. I believe it does protect you against the worst types of flu so I think it is worth it.
The only word I can think about that starts with C is CURE.
Thinking of you today LUV and in your pocket with hugs.
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My oncologist highly recommend the flu shot for me before I started treatment. I believe I received it the day of my first TAC, or it was a few days before. Time line is a little blurry to me now.
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I got the flu shot at my oncologist's office last fall. They had signs all over the office when I went in for a follow-up so I just did it there. I usually get charged for it at my PCP, but did not when I got it at the MO. Go figure?
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Welcome ajb!
Cocker, yes.....cure.
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Thanks Marsha and Cocker! XO!!
Marsha, I get a flu shot every year also!
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Thank you all so much. I WILL be in line next year. Not even want the thought of doing this again. LUV I am snuggling in your pocket tonight so I don't miss the appt tomorrow. I'll wear a mask so you can't catch this.
😷
Marsha
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Luv,
Sending you my prayers. Lots of extra love & hugs too.
G
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Aww
Marsha I hope you feel better soon! Said a prayer for you! Get plenty of rest and fluids.Thanks to you as well SA
8PG! You ladies mean a lot to me. I really mean that! XOXOXO!!!0 -
I got a flu shot from my mo at the time of my 2nd or 3rd AC. My mo said I needed to have it. I was getting neulesta at the time also so noflu symptoms reaction.
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That is so interesting. My MO told me (I asked if I should get the flu shot) that it wouldn't hurt anything but that it would not work (during active chemo treatments) because of the chemo's effect on the immune system...
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Lou, the surgery after chemo showed no cancer. The surgeon told me that they could tell cancer was present at some point but it was dead. I honestly forgot to ask him if he was talking about the tissue from the lumpectomy or from the additional lymph nodes they removed.
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Ladies I remember having a discussion with my wife's Onc regarding follow up scans. I'm sure cost has to do with it...but he explained that the bad outweighs the good with scans unless there are symptoms...mainly because of the amount of radiation. Maybe not getting a lot of scans is a gift! I read somewhere that one PET scan has the radiation of 500 X-Rays! I'm not sure if that's true...but I sure wouldn't want that amount of radiation unless there was a darned good reason for it.
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I'm home. They were way behind this morning My Onc said he thinks my pain is just an inflammatory issue from post mastectomy pains. He said he's seen similar symptoms in many patients. He said he couldn't even feel my liver which is a good sign! He says I'm doing well and to come see him in six months! I'm exhausted! My head hurts, my stomach is still in knots and I just feel kind of bleh. Too much stress I guess! Lol. I pray every day for a cure for cancer! Thanks so very much for the prayers and support! I couldn't do this without y'all! XOXO!!
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Ajb - welcome
Luv - I've been checking in today hoping for a good update from you! So glad you're home and your onc isn't concerned! Take it easy today. Sending you hugs! xo
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I emailed my MO's nurse about my side effects, and because of the serious increase in neuropathy, they're having me skip tomorrow's Taxol and come in next week to check in. That appointment was supposed to be the checkup before my final chemo, but I'm hearing now that my MO may stop here or possibly after #11 next week if she lets me get it. I'm incredibly anxious about this, because I never saw that coming. I'd been doing really well as far as neuropathy or other side effects, but they seemed to have crashed in all at once. I HATE the idea of cutting treatment short; I didn't even want to reduce the dose before this. I'm hoping I can talk them into at least a reduced dose...
Talk me down. This isn't the end of the world, right?
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I almost always get the flu shot (except the past 2 years we were in Germany). It won't cover everything but figure if it can keep from getting most of the strains then it is worth it. Plus for many years I worked in healthcare so not really optional.
Tests Update--genetics called back and I am negative for the major 6 ones they for...will continue to test the remainder of the 17 possible mutations and will hear back when they are completed in a few weeks. Test results in exactly 2 weeks for the initial set. (blood was drawn Jan 19 late afternoon) and sent to Ambry Labs which is on the West Coast so not sure how many days it took to arrive.
MRI was yesterday morning....saw my results pop up in my online hospital chart this afternoon--RESULTS copied below--
(findings)
There is no internal mammary or axillary lymphadenopathy bilaterally.
IMPRESSION:
1. 1.6 x 0.9 x 1.4 cm suspiciously enhancing mass in the upper outer right
breast posterior depth at 9:30. This is consistent with the patient's known
breast malignancy.
2. 6 mm enhancing mass in the lower outer left breast at 5:00. Targeted
ultrasound is recommended. If this is not seen then this should be followed
with MRI in 6 months.
3. No other MRI evidence of malignancy.
(end)
SO the tumor is significantly larger than even the surgeon got from the US in her office on Jan 22 (1.0cm was the largest she measured). The November 30 ultrasound 1.3 x 0.6 x 0.8 cm.
granted its been 2 months so I expected growth....
What do I do about the #2 6mm enhancing mass?? Did anyone else have something like that in the opposite breast and it turned out to be nothing??? I'm still trying to decide lumpectomy or BMX and this doesn't bode well.....Tumor review board meeting at 12:30 Wednesday. If I have to get another biopsy and wait for the pathology treatment will be delayed another 7-10 days probably. My right breast tumor is not palpable.
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HausFrauMi when they did my wife's MRI's etc they got 3 different sizes. The doc said the only completely accurate tumor measurement is when they do surgery, due to varying angles, equipment, etc in the imaging. Not saying it hasn't grown...but that may not end up to be the case or it may be only slightly bigger.
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Thanks AL! That's good to know with these numbers all over the place!!!
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Amy - there's been a few ladies here who have stopped chemo early. I hope they chime in, as I'm sure they'll reassure you it's not the end of the world. There's also been others here who discussed stopping early due to neuropathy, but pushed through. I would definitely have a nice long talk with your onc and weigh out all the options. Like you said, maybe you can compromise and reduce your dose, or maybe the week off might help and she'll decide you can finish it out. I'm sorry this type of big treatment decision was sprung on you though. Hang in there!
Haus - I had 2 small, non-palpable masses show up on my MRI at diagnosis in my opposite breast. They did core needle biopsies and both were calcifications. Unfortunately, this did delay starting chemo by two weeks, but that same MRI also revealed a tumor on my sternum. I had lots of scans for that in the same time frame, so I'm assuming you might not be delayed quite as long. So very sorry you're being thrown another curve ball, but keep the faith. These darn scans. They turn up all sorts of benign things we should never know about!
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((LUV)) rest and relax, luv you!
Marsha, I hate the flu. Hoping you are feeling better today.
Haus, I am not good at reading scan reports...so I am hoping others can provide wisdom.
Hugs to Ally It was a beautiful day here, very warm the last few days which this time of year is unheard of. I understand much of the upper midwest is getting a huge storm tonight, hope you are safe and warm.
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Meadow, not one bit better. Finding out 12-14 days for this one & I not at a week yet. Thanks for the wishes.
Luv, everything is going to be fine. I still have areas of pain at the spot of my tumor. I know it is just phantom nerve pain. Breathe. We are all still here with you
Annie, I truly think you got the best "C" word!! Love it. CURE.
Amy, I had to stop after only 2 A/C treatments. I had no choice as I would have been one of the chemo deaths no one likes to talk about. I have no regrets. I had my 3 year NED this last December. Do the best you can with your MO's advice. If you don't trust your MO .......move. I did.
Trust, yourself.
Marsha
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HausFrau... I got your PM and I will reply in the morning! No, they weren't able to palpate my tumor due to its location against the chest wall (central 4:00). Otherwise, your MRI findings sound very much like mine... and those measurements were much larger than the ultrasound and mammogram.
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