TRIPLE POSITIVE GROUP
Comments
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Welcome Katharine! Where are you in North Carolina? I did my fellowship in Chapel Hill at University of North Carolina Hospitals. It is gorgeous there. In the Winters here in Indianapolis, I think of the tar-heel blue sky!
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Thank you pbrain! I'm in wake forest. I love it here. Grew up in New York City and am just loving the south.
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Rozem, happy to hear your results. Hope pain is better today.
Katharine, welcome to the board. Love your positive attitude.
Pbrain, I had ACx4 and Taxol/Herceptin x 12. But no family history of heart issues. My last herceptin will be next week. So far my heart is good, but I know effects of the AC can
show up years later.
TonLee, do you get the Activamune directly from its website? Do you know if it is in place of a daily multi vitamin or in addition to?0 -
Welcome Katherine. Rozem glad for the good results. to everyone, Much Love
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solt they did a pathology after my bmsx -its standard even if it is prophalactic (sp?), i really wasn't worried about it since i just finished treatment but its nice to know nothing was hiding in my very dense breasts
pbrain like the others have mentioned i believe there is a very very small advantage to ACTH but if you are worried about heart issues you and your docs need to look at the risk/benefit. I still haven't figured out why certain oncs recommend one protocol over another other than just personal/center preference. I had fec-d which is the same as ACTH.
so im still on pain meds (percocet) and they added another drug thats supposed to help with the nerve pain. It has helped. I am just worried about being on the percs over a week (i was on another drug before that) I want off these meds but it seems I can't yet - i am so frustrated
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Mine is triple negative. Although the invasive tumor was only 1.8cm, there was 14cm DCIS on the base of the tumor. The DCIS could not be seen or felt on Mammogram or ultra sound.
Learned from my experience
1. DCIS may not be detected by mammogram unless it forms a lump. In my case the invasive part had a lump, the lumpectomy found DCIS. Certainly mastectomy followed and got them all
2. Mammogram may not work well for young women, no matter how soft your breasts are. I breastfed all my 3 children and mine was hanging D cup. I was surprised when doctor called mine "dense breast tissue" on the mammogram and blamed that for inaccurate detectionI am going for hemo next Thursday. Oncologist offered 2 regimes. FEC-D on a 3 week cycle OR ACT-DD biweekly. Does anyone know the pros and cons on these 2 options? Is it too extreme to go ACT-DD since I am stage 1 with no lymph node involved? Oncologist rushed the apointment and didn't have chance to ask. Thanks for any input in advance
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Just popping in to say hi - hope you are all well.
pbrain - my onc said he only gives ACTH to node positive patients, so that is one way of thinking.
Good news girls - my MRI was clear!!! and my breast surgeon now only wants to see me once a year!!! I loved that news as I was really getting stressed with the 6 monthly monitoring.
Sue
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Jenn: great hair gal!
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Pbrain, I talked to my MO and he felt the studies didn't support TCH as well as ACTH. I decided to trust him. I just had my first Herecptin-only infusion and have had to stop the drug due to a decrease in my EF. He said the kind of heart damage done by these drugs has nothing to do with the typical heart disease (clogged arteries, etc.) that may run in my family. I have had no symptoms - no shortness of breath, no racing heart, no swelling. I'm learning that cancer treatment is not an exact science. What works for some, doesn't work for others. We want there to be a right answer, but unfortunately it is not all that simple. I personally felt that I couldn't live with myself if I went against my MO's recommendation and then had a recurrance. I try to live with no regrets, but it is hard.
I got my period during my MX, during my first chemo infusion, and during my second chemo infusion. Ain't life grand? I haven't had it since, but my MO said it might still come back. I was premenopausal and 49 at diagnosis.
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Shore,
I think you've confused me with someone else? I don't take that supplement.
Welcome Katherine! Love your kick butt attitude.
VBall...good to "see" you..sorry to read about your compromised EF.
TCH vs ACTH...
My gut told me to go with TCH because I'd read the red devil's heart damage is irreversible. The odds of Herceptin damage are very low and in a majority of cases, reversible. (Before the latest study showing women having heart issues as far as 5 years out with no plateau.)
My Onc let me choose because there was only a couple percentage points difference, and they fall within the margin of error.
In the end, there was a shortage of Ad. when I started chemo, so I couldn't have taken it even if I wanted. Which turns out for the best. If herceptin damaged my heart, I can't imagine what Ad. woulda done to it. And both combined? Ugh.
Even the most decisive person has some hard decisions to make when it comes to tx. I agree with VBall...make the choices you can live with
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Rozem- hope your feeling better, and able to get off pain meds soon.
Vballmom- thanks for the info on monthly cycle. Still nada, so maybe this is it. I have been a little snippy here and there and some mild cramps, but nothing more than that.
Going for my Pre chemo labs today. Then my second one tomorrow. Prob mentioned this a dozen times already. Lol! It's a love/hate relationship I'm having!0 -
Good morning everyone!! I put a picture up of me, so hopefully this works. MsTori - I will try to write when I can as well. I pray that God will give us both the strengh to make it through this next infusion. My thoughts and heart will be with u.
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solt im in Canada and FEC-D is a very common protocol here. I see a lot of ppl from Australia and the UK also use this chemo regime. My onc does not treat without an anthracycline, again personal preference. When I had my second opinion at DF in Boston she said they also only use ACTH, again regional differences I think
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First time poster from west of the Rockies (please forgive me for that lame George Noory conspiracy radio show reference)
I feel like I know some of you quite well since I got up to about page 20 of this mega-thread last night before finally falling asleep.
First off, thanks for all the information thus far (and I'm only at page 20!). I have a desktop full of new screenshots to file in my "I am very, very, very healthy" file.
(Editing to add: everything from here to the last paragraph is TMI and skim-worthy at best!)
When I first felt my lump (or a few months after) I went to an acupuncturist to try to get myself balanced out before we were scheduled to leave on not one but two pre-planned trips - one to see family and the other a much-needed vacation (for my husband - well, for me as well but he's the one with the stressful job).
Anyway, the acupuncturist (pre-diagnosis) kept telling me to say repeatedly "I am very, very, very healthy." When I told her about all the information I had compiled on my computer she said "put it all in a file and rename it 'I am very, very, very health'" - so that's what I did (all of this when I should have been cancelling vacations/visits and NOT postponing biopsies but oh well, I made my decisions and in stone they were cast...).
So now, the tan has faded and my breasts are decorated with hieroglyphics for future incisions (I hope the ink doesn't cause *gasp* cancer). I haven't taken a shower yet this morning so I will be scrubbing off everything momentarily. I wish I could scrub off cancer but alas, I've yet to cure myself with big doses of curcumin, R-Alpha Lipoic Acid, green tea supplements, sulforaphanes, D3, a Himalayan salt lamp (desperate times call for desperate measures *smirk*), acupuncture (it turns out she had been arrested for , um, too many "happy endings"), etc.
Excuse me for going on and on. My moods (yes, I have many! I'm sure you all can relate more than I can because you're true veterans of this so-called cancer journey!) are in full swing this morning because of the first two major hitches in this process that have come up in the last two days.
My husband just came back to the bedroom and said his first instinct is to put on his managerial hat (heh, like it's ever off in the first place!) and pick up the phone and say "fix this" to the breast surgeon's office but (1) it's too early and (2) we will handle this like the civilized people we pretend to be!
The other hitch was finding out I was HER2+++ and that was only after I had to call around and find out if a final breast prognostics report had ever been completed. It had, but was molding away in the pathology department at the hospital where my biopsy was done on October 4.
Snarkiness aside, I'm reaching (clutching) at every silver lining I can find and I feel blessed to have some positives (three of them
) that the doctors can throw meds at in the not-so-distant future. The bilateral mastectomy (the right side is prophylactic) is scheduled for next week but a glitch in the breast matrix may change that and it's for a pretty annoying reason, i.e. the breast surgeon's plastic surgeon/right hand gal/wingman/wingwoman does not take one of the most common insurance carriers out there (starts with a B and it's a PPO).
I was ushered through this oh-so smooth process, complete with a beautiful office with faux mid-century modern furnishings, only to find out that there's a big fat nebulous cloud of difference between what this plastic surgeon bills (out-of-network) and what that very common carrier, PPO insurance company will pay her for her services.
Breast cancer is a big enough surprise as it is without getting more surprises in the form of gap payments to a plastic surgeon who wasn't really "my" choice. I'm assuming she and I will have a longer road to travel than he and I will ("he" being the breast surgeon I researched extensively before the vacations) so now I feel backed in the corner at the last minute - especially when he assured me three weeks ago that "insurance covers breast reconstruction - they have to."
What he didn't say was that there might be a gap between what insurance would cover (for her services) and what she would charge. (BIG SIGH)
All I want to do is get this cancerous ball of confusion out of my chest as soon as possible and since we've already delayed it because of the plastic surgeon I'm just a little miffed and I'm ranting when all I really wanted to say was good morning and thanks so much for this thread and thanks to all the participants who have given me much more hope than I had when I read the delayed pathologist's report yesterday...
So, again, thank you all. I'm determined to read this entire thread (and beat this 3.1-3.4 cm enemy!).
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Welcome Lee!
Always glad to see a triple + find her way here, but still hate that it's cancer driving the group.
It appears as if you have a good grasp on things. I had to laugh when I read the acupuncture story...not that it delayed your diagnosis and tx, but that I've had people throw all sorts of things at me. Including a "green tea enema" ORGANIC of course.....
It doesn't usually bother me, but sometimes I'm offended. Especially when its.."hey, you know brussel sprouts (insert any food) get rid of cancer." I usually respond with....WELL THEN I SHOULDN'T HAVE IT!! I love me some green veggies
I mean do I look like I sit home and eat choclate and do tequila shots while sunbathing to you??I think alternative is great in conjunction with tx. But Her2 seems to grow and move so fast, I don't believe it would have been a wise (only) choice for me. But to each their own I guess.
I WISH positive thinking cured cancer. Wouldn't that be AWESOME!!
Anyway, welcome...and if you don't feel like reading the whole thread, we've covered things over and over and as new gals come...just ask...we're here for you.
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Welcome LeeA - Glad you found us! You can just jump in with a question whether or not we covered it before. I think I repeat myself all the time. No worries!
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Welcome to the new ladies! Sorry you have to be here but glad you found this thread. I don't post much but check in pretty much every day. There is a wealth of information and support here!
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Thanks for the welcomes, kind thoughts, etc. and the same back to everyone here!
TonLee, to clarify, I only used alternative methods during the eight week period between my BIRADS 4 mammogram and ultrasound to try to balance out anything that might be happening inside my body (i.e. cells roaming around while traveling).
I talked to the radiologist and told her about my thoughts regarding visiting my mom and son first (the trip was planned - my mom is probably in the beginning stages of Alzheimer's and I'm an only child - when it rains it pours) and she said "by all means, go on your trip to see your family and go on your vacation." Her words: "these tumors take years to grow (ha...) and whatever this is, we'll deal with it when you get back."
Anyway, during those 8 weeks between the mammogram and the biopsy I threw everything at it that I could - knowing full well that I had no choice but to follow a traditional line of treatment when I got back home from these two scheduled trips (I didn't want to have the biopsy prior to the vacation due to fear of infection from ocean water, etc.).
My stupid mindset in all this (re: the 8 week delay) was "I've always had fibrocystic breasts, I've had callbacks (well, one) and this will go away if I cut back on the caffeine." Well, it didn't and here I am today - fast growing tumor and all! Oh, and I was in a car accident several years ago and had severe bruising from the deployed airbag so there was that, too (the eternal hope for a fat necrosis diagnosis). In other words, I used every trick in the book to keep my mind off of it between the time of the mammogram and the biopsy.
Excuses, excuses...but if anything, I've proven to myself that I'm more of a positive thinker than I ever thought I was.
Also, for some background information -
I just turned 54, started menstruating at a very early age (third grade?), haven't had a period in nine years, had a big fibroid cyst/tumor removed about 10-11 years ago, never seemed to be able to make enough milk to satisfy my son's needs so switched to the bottle fairly quickly (this was all 24 years ago) and if I recall correctly, the left breast was the one that "worked better."
Throughout the years it's always been something with the left breast. Starting when my son was two (gynecologist thought he "felt something") and then when he was about 14 (BIRADS 2 callback) and now, many years later - breast cancer.
Today I have a lot of nervous energy. Too bad I can't bottle it and save it for some point in the future.
Oh, and one other (long) thing -
Over the past 15 months or so I've lost about 25 pounds. It wasn't an unexplained weight loss - it was intentional. My husband and I tried the 17-Day Diet and over time it resulted in a big change in eating habits. Right now I'm stuck in this "what could have caused this?" loop and I know that the biggest predictor is being a woman. But I keep wondering if it was eating more dairy in the last year or more soy protein . . . of course, I'll never know but it doesn't mean it won't always drive me crazy trying to figure it out.
My husband was diagnosed with a very serious autoimmune disease exactly five years ago and I did the same thing - wracked my brain for what could have caused it to happen so suddenly. I'm definitely going to need to get over this hump but because the BS says he "guesses" it might have been there for about a year and we changed our eating habits over the last year I can't help but wonder if there's a correlation.
I haven't eaten anything this morning because I can't figure out the right thing to eat. I'm carb-sensitive and I've relied on a certain brand of protein bar for months but, of course, they have soy protein so I'm waving goodbye to those old standbys.
Thanks again for this great thread TonLee, and thanks to everyone for making it almost encyclopedic in nature.
P.S. I promise to be briefer in the future! Nervous energy...
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I can't believe that it's Nov 1st. Crap the holidays are coming and I still cry ALOT... Was diagnosed in Dec and 2 surgeries later in Dec lets just say Christmas was not very good at my house for my husband , daughter or me. Here comes the holiday season and THIS YEAR I am trying to move on and let it be a happy occasion again in our life however not much money and our daughter is now 17 years old no one except me wants to be happy and get excited about at least Christmas. My daughter said she does not want anything and my husband won't answer me on any gifts he usually hints on around this time of year. So my comment last night was wow why even put up a tree? That has NEVER been our house always Christmas decor every where. All I could do is CRY last night. Some times I feel why even bother anymore.
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Lee,
I got you. I understood the thinking, about trying other things while on vacation. Best case scenario, you come back and it's gone! Right?
I managed my denial my own way.
You know, cancer burns 10 calories to every 1 calorie your muscles burn. There is a very strong likelihood that the diet didn't take your weight off as much as the cancer did. I wouldn't worry the diet aspect. I know plenty of people whose diets are FULL of horrible things on a daily basis and they don't have BC.
My own personal theory is that it's a series of events, or switches. Perhaps each of them are different per individual. And perhaps maybe one of them is viral in nature.
I went to a lecture on how cancer forms in the body...and it's actually very difficult because our bodies have defense mechanisms in place. Not just one, or two, HUNDREDS. So, as a last resort, the body will section off the growth to try and keep it from spreading (which is why it looks kinda round in a lot of cases, and on another note, why our implants get scar tissues around them...)lol
The Insurance thing is frustrating. You may want to get a second opinion from a PS that is in your network.
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Ang,
It took us a little while to get back to normal. Perhaps Christmas reminds your family of what they almost lost. I've heard of people who lose a loved one on a holiday and aren't able to celebrate it for many years, if at all.
My 16 (17 in two weeks!) year old doesn't have much use for the family unit at this point in life either. I think that likely has more to do with age than BC. At least that's what I tell myself
Anyway, I'm sorry you're struggling....((A))
Dechi! Thanks for checking in! Feel free to jump in any time
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Hi LeeA...
We all do it and you'll find many previous discussions of it in the forum but you're wasting your energy being" stuck " in the ' what I did wrong to cause this ' thought process.
There was one about having really big babies. Another about being very tall.
None of us will likely ever know the factors other than perhaps genetic disposition someday that contributed to our breast cancer. There is an enormous wealth of information in this forum and elsewhere on the many treatments and the difficult decisions you must make regarding them. It's really too much to absorb at once but you are better served just skimming some of it than looking to the past for things that can't be changed.
Welcome and know that you have lots of wonderful friends here to give you the benefit of their wisdom from experience. No matter what you may face..there is likely someone here who has been through it as well.0 -
ang - I think it is natural to feel things more intensely as you approach the anniversary of your diagnosis - you have been through a lot in the last year. Today is the two-year anniversary of my BMX, and the couple of months following seemed like a string of bad news events - discovering that I was node positive (SNB pronounced clear in the OR) and needing a separate node dissection surgery five weeks after the BMX with another positive node, then healing issues that spawned three more surgeries in six weeks and the loss of my expander on the left. Now that I am two years out I am calmer and feel more distance from that series of events - and can look back with a different perspective than I did a year ago. I think you just need to "do" Christmas this year as best you can, maybe start some new traditions - serve dinner at a homeless shelter, or do handmade gifts - just something different - and when the holidays roll around next year things will seem more normal. I also agree with tonlee on the teenager thing - mine are now 23 and 24 - and pretty chill about the holidays, but they seem to enjoy being together as a family more than they did a few years ago.
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Thanks guys, I have a bunch more to read on this recent string, and welcome Lee. Sol, I do consider getting a second opinion--I think that is smart. I get my first opinion tomorrow afternoon. I think SuzieQ hit it on the head though. My MO said he couldn't tell me which of the two treatments he would recommend until he saw the post-op pathology, so maybe he was waiting to see if I was node positive?
I'll post tomorrow evening because I'm sure I'll spend this weekend pondering. I know he wants to start next week (goodbye hair, sob....sniff....) so I'll have some thinking to do. But I so thrilled to have all of you who have had to make this decision to give me your thoughts. And thank you Vball, you are so wise. I have to live with my choice and once I make it, I'll do my very best not to second guess. I honestly think I'm way more afraid of cardiovascular complications than a recurrence since I am 52 years old. I'm hitting that cardiac twilight zone...
Caylee, you are so very cute!!!!!! I think you are rocking your almost bald look. We want to see what Ms Tori is looking like. I'm right behind you guys so I promise to post a lovely shot of my giant, bald noggin (complete with its own weather system),
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TonLee, no, I did not know that cancer burns 10 calories to every 1 calorie muscle burns! Hmmm. My body shape has changed so much in the last year. I wonder if that has something to do with it...I recall reading something about brown fat and cancer cells but I've read so much the last few months that I can't really recall what the gist of it was. When we were on vacation I spent just one day snorkeling because I got so cold afterwards that I thought I would never warm up again. It was one of the strangest bouts of coldness I've ever experienced (and we were in a warm climate!). This is the complete opposite of how I've been most of my life - i.e. always warm versus cold.
ashla, thanks for the welcome and words of advice from you (as well as TonLee) regarding obsessing over what caused this to happen. When I read the words "big babies" my antenna shoots up because I had a big baby but on the other hand, I'm not tall (5'3 or 5'4). I'm postmenopausal and have been for quite a long time and in reading the first 20 pages or so of the thread I've noticed that many here were either younger or perimenopausal. When I saw mention of Sudan earlier on the thread I went as far as to look up the longitude/latitude of Sudan - lol! I need a lobotomy AND a mastectomy!
ang7894, I'm new here and just now embarking on this topsy turvy journey but I thought I would throw in something that SpecialK's post brought to mind - a Thanksgiving five or six years ago when my son was here for the holiday (he left California as a teen to live with his dad back in the midwest). As was often the case during those tumultuous years after he left, he and I had a small falling out of some sort and he went to his room "mad." He came out to the table to eat but he still had an attitude (and I'm sure I probably did as well). After we cleaned up the dishes we did something my husband and I had done when we were renting a loft in downtown Los Angeles - we packed up a good portion of the leftovers (small family/too much food) and made up plates to take back downtown (we've since moved to a suburb) to hand out to people on the street.
He was still kind of grouchy when we left the house but by the time it was all over he was a changed man - relatively speaking, of course! There was no rhyme or reason to our handout pattern other than seeing someone walking around, upon which time he would jump out of the car and ask the person if they wanted dinner and then we'd move on. I'm guessing that if I asked him the one Thanksgiving in California memory that sticks for him it would be that particular year.
I bring this up because I remember those years (15-20) as being the walking-on-eggshells years and SpecialK's comment reminded me that, for at least one little moment in time, we were able to get past our friction (even an hour or two can be a relief!).
As far as stressful anniversaries go, I often relate October/Halloween to the time when my husband became so ill and I'll end up with what I call the dark cloud feeling. It's called an anniversary reaction http://www.pace.edu/counseling-center/line-resources/managing-anniversary-reactions-traumatic-events (my doctor offered it up as an explanation for my weird, spacy feelings around the anniversaries of my father's passing). I was kind of relieved to know it had an official term!
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Ang, if I have to come there, I'm gonna put up a tree! You just grit your teeth and do it. A year and a few months ago, my father died in hospice in my parent's living room on my birthday. He was diagnosed with advanced adenocarcinoma and we all had no idea because he wasn't in any pain, just getting weaker and losing his appetite. By the time he was diagnosed, he was dead 2 weeks later. My Mom, siblings and I got him into hospice so he could come home. It was a very peaceful, but sad and sudden time for all of us. We were always the charmed family with no real problems. Healthy, wealthy and wise, all of us.
So this year for my birthday, I flew home to Philly and we invited friends and family over to my mother's and we all had a giant memorial party. We made the foods my father loved, and we had cheap champagne. In honor of me, my mother bought some Middle Sister wines. We lit the fire pit and the kids sat on the patio on sleeping bags, roasted marshmallows and we told funny stories about my father. It was wonderful and healing.
I don't dread my birthday. I honor that my father passed away on that day. I know I was always his favorite
and I am thrilled to share my birthday with him now. Do everything you can to make some wonderful Christmas lemonade this year, for you and your family, even if it seems like they don't care. They do!
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pbrain - I think my onc's logic is that the risk of permanent heart damage using AC-TH is overkill for node negative bc. There is less than 1% difference in success between the 2 protocols anyway.
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LeeA....
I think I can say without too much opposition in this forum that during the next year at least( I can only attest that far having just completed my first year) your psychological, brain, mental, lobotomy issues will likely outweigh your physical problems. Some of it is the result of treatment and some as a result of the trauma.
Let it all hang out and above all ask these ladies or ad vice. We have all done so.0 -
HI SUSIEQ!! How are you doing? Must be spring there, yes?
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Welcome all newbies. I still count myself new. These ladies are so awesome!
TonLee- took my mag ox today.....we will see. Lol!
SpecialK- you are amazing. I love your positive attitude. It's even making me a little more positive going for my 2nd tc tomorrow. :-) cheesy grins.
Pbrain- let me see if I can change my avatar from my ipad. I haven't so far, because last time I had to get on the actual laptop! Lol! This iPad is spoiling me! It was my I've got cancer I'm deserve an iPad purchase! Lol! I will try. Even the little spiky hairs are falling out all over. Except in front, still have it there. Lol! Still very liberating. But a tad sensitive.0
