TRIPLE POSITIVE GROUP
Comments
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Ok, I need to take some pictures that are close up. Didn't do that yet. But I did figure out how to change avatar on iPad! Yay!
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Ok, all my close ups turn upside down. Still under construction.....lol!
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Ms Tori,
Stick with the Magnesium Oxide for several days! And by the end of this tx, you'll know how much you need or if you maybe should cut back a few days....and I know it's weird, but let me know how it moves ya! lol
Good luck tomorrow my sister.
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TonLee- thank you. I will let ya know how it goes. ;-) right now.....I think I need a lint roller for all these spiky hairs falling out! Lol!
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Thank you so much everyone for your input. You ALL are amazing bunch of woman.
I am so thankful for you guys and for finding this site. (( HUGS )) TO everyone have a great night.
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Thanks Pbrain for the nice comment and MsTori you ARE BEAUTIFUL!! Just got back from my oc and he seems to think most of my problems I had from the first infusion was caused by the steriods so he cut the dose in half so I can sleep. I didnt sleep for 3 nights then I crashed and had a hard time coming back. And for the gitters I had, he seems to think I was drinking way to much and it was overloading my kidneys. He told me to drink a minimum of 2L a day, I think I was doing up to 4L. Anyways, 2nd infusion is tomorrow morning, hopefully this new port will work for me. Thanks to all of you for all your words of encourgagement. Hugs n hugs!!!!
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caylee - my nurses had me take a big breath and blow out as they put the needle in the port. Worked well - Good luck!
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soltantio, thanks for the welcome and words of advice as well as the recommendation on the book (I chuckled at "the author isn’t some woo woo hack").
On another note, earlier today I searched the word "Slamon" on the board and one of your posts came up. He comes up on our insurance provider list.
I'm thinking about calling his office tomorrow. It would be a bit of a drive but wouldn't be too bad during the middle of the day (crazy traffic!).
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Thanks Sol, surprisingly, no one has told me what the levels of receptors are on my cells. However, I haven't ever received my post-surgical path report. I suspect I'll get it tomorrow but if I don't, I will ask. They haven't done the oncoDx or Mammoprint testing either.....not sure why.
Ok, super, super duper odd question--I'm a loon, I swear. I'm still healing from the lumpectomy/SNB on the left, I had an echo yesterday that mauled the left breast because they have to and I understand (the technician was wonderful and as gentle as she could be). My left breast feels ok, the dissolving stitches still itch, but no biggie. However, my right breast seems to be wailing and crying in sympathy for my left. It just aches and aches tonight.
Is that bizarre?
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Pbrain - I don't think they do the oncotypedx for HER2+ tumors because they automatically figure it will come back high since HER2+ is part of the risk calculation. don't know if that's always true though, here and there I have read posts from women who had HER2+ tumors and had the oncotype - some did get a high score but some got intermediate.
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Hi Omaz - I'm fine - just working hard as usual. My hair is gorgeous still. No more curls!!!
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Welcome LeeA.
Pbrain, are you running a fever? Are any areas of your stitches red or oozing or even yellow? The tightness could be worrisome and if ANY of the above are answered with a yes, please call the doc. Otherwise it could just be onebof those unexplainable weird things! LOL
Angie, its a year I was diagnosed coming up, and its weird to realize where I am compared to a year ago. I actually made an apt with my knee doctor to see where I stand with knee replacements.
that's what I was doing last year when all this started and it had to be pushed off to deal with the bc. Just is weird to be back there in my mind.
Much love to all.0 -
MsTori - you need to edit your photo on the ipad so that it is less "tall" and more square shaped...
Jenn0 -
Thanks for the welcome, Moonflwr912!
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I've been reading through the first several pages of the "Any 10+ year survivor HER2+ people" thread. There are so many acronyms to learn - it makes my head spin. I just looked up yet another one: ooph. I still have my ovaries or what's left of them after nine post menopausal years. Now I'm wondering if they'll have to eventually go as well. I'm also wondering about menopause in general and hoping none of these future meds will throw me back into menopause.
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Caylee, many years ago I had some cosmetic surgery work done and the PS put me on some kind of a steroid packet. At the time I had no idea that the steroids were what were keeping me up until 5:00 a.m. without even a moment of being tired (despite having been through rhinoplasty, etc. - procedures that should have left me exhausted). IIRC, this went on for three or four nights in a row. All this was before I developed insomnia so it was a pretty strange experience. Are you allowed to take melatonin? I was taking it prior to this final week before surgery. I think I read about someone not taking melatonin because of weird dreams (my retention level is at an all-time low right now but I'm sure it will go even lower in the weeks/months to come).
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I made it through page 30 tonight! Earlier this evening my husband said "try not to read too much at once" (he's afraid I'll get too dark cloudish/read: depressed) but this thread has not done that in the least.
I'm back in March 2011 (the end of that month) and a few things stood out. Actually many things stood out but I wanted to take the time to comment on two of them:
#1 - TonLee (March 2011): "That's the reason I kinda freaked out about the green tea during treatment. This woman who died, she took IV infusions of Vitamin C from an alternative as well as chemo, and essentially they told her husband it negated the chemo."
I have an internet friend who is very well-meaning but has really pushed against chemo. When I politely told her that I have an aggressive tumor (this was before I knew it was receptor'd out to the max but knew it was grade 3) and have no choice but to follow the doctor's (doctors') orders and if the word survive was going go be bandied about I would appreciate it being used with the word "will" versus "can, i.e. "you will survive this" versus "you can survive this," she changed her tack and started sending me links about having vitamin C infusions concurrently with chemo...
I've actually stressed out a bit over trying to find an oncologist who would honor such a thing but now I can see there is a perfectly good reason why I've felt obsessed to read the entire thread (and I will do it!). Reading this little nugget of history was an eye-opener and I thank you for posting it, TonLee.
Also:
#2 - Lago (March 2011): The beginning is so scary because there is so much you don't know.
Yes, yes, yes. The learning curve alone leaves me feeling weary but more than that, I can only bear to bite off little pieces at at time. Typically, I research everything like crazy. For example - I can't even buy a $25 flat iron without reading every review on the internet - lol - now I'll be returning the darn thing because it will take forever for my hair to ever get long enough to flatten! And I suppose I should stop having it colored (in the distant future) but these are meaningless thoughts that I seem to be using to distract myself from looking up too much about terms like KI67 and comedo, etc. My curious streak has done a 180 and I'm now an ostrich with its head in the sand.
For some reason this thread has allowed me to peek into the future without completely freaking out. I keep thinking of that line from the movie What About Bob... baby steps, Bob. Baby steps.
Thanks again, all, for sharing so much of yourselves along the way on this thread. I've fallen down the rabbit hole but you all have made the descent a lot less frightening...
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OMG I just caught up--rhere's a novel in here somewhere.
Welcome to all the newbies, we're always sorry to see new people, but everyone has to be somewhere, and this is a good comfortable place to be and I think u'll agree lot os knowledge contained in one place and a whole lot of caring. I look at u'r pictures and u are all so beautiful, even with no hair and I looked like Uncle fester and it didn't bother me so I imagine looking so pretty it shouldn't bother u, it's just a part of this horrid disease.
Sol I have been to 4 diff. drs. and no one can find why I still get D and I still can't make it to the bathroom most of the time. They are sending me to another Dr. and see if he sees anything. Pbrain next week is my heart Dr. so I'll be asking u questions.
Oh and BTW I think it is like this--u burn 180 calories watching a scary movie-I should be as skinny as a rail--that's about all Iwatch. LOL
And rozem good scans right?
OMG it chemo, hair, hearts, periods, pain and bunches of thins talked about here in te last couple of days--alot to take in, but most of it doesn't apply to me I'm sll done. just leftovers still going on. Not that everyone will have them so don't worry aout that please. And mu theory is cancer is random makes no differene how well u take care of u'r self if it going to happen it's going to happen. So I really hope no one ives alot of thought to thst, it's a waste of energy and u need u'r energy to take care of it with ur drs.
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LeeA - 'I feel good, I feel great, I feel wonderful' ----Bob *Baby steps indeed!
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LeeA, I know many of us have researched ourselves silly. When my doctor asked me if I knew anything about BC I told him that I had read the internet...the whole internet...everything that could be found, I located! It is overwhelming. The one step at a time is very good advice, as is taking notes and bookmarking pages of interest. Some posts scared the daylights out of me. I was terrified to get my port (best thing ever and easy-peasy for me), I'm a needle-phobe, have no tolerance for pain or anything gross (blood, bodily fluids, etc.) and could not figure out how I'd get through chemo (and surgery and drains and ....) but I did.
I've decided to trust my doctors, but research each step as best I can and go in armed with questions. This week I asked my RO about taking vitamins during radiation (normal dose = okay, mega-dose not okay), my MO about CoQ10 to protect my heart (okay for me - I'm on a Herceptin break) and my cardiologist about exercising (yes, please walk - do not push to the point of pain). Unfortunately, I find that my doctors are not quick to suggest things - they tend to wait for symptoms or side effects. I go in armed with, "I am feeling this, is it okay to take xxx?"
Cami, I hope you find some answers soon. Nothing worse than riding the D train.
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Moon....
I too just had my one year anniversary from dx. These few weeks have been surreal. Just had pumpkin my power port removed...it was placed on halloween when I had my sentinel node biopsy! The strangest thing is that my year was sandwiched between 2 hurricanes...Irene and Sandy! Last year we were skipping through post Irene downed trees and powerlines for the sentinel node biopsy and this year for post Sandy post op checkups....
In between......a fuzzy, indescribable whirlwind .0 -
Good analogy for your year, Hurricane Ashla. I feel the same way, just passed my one year mark and looking back "hurricane" describes it pretty well. Let's hope the winds have calmed for us now.
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Lee,
I think you may find, after reading more, that for every bit of information we think we know...lol, down the line may change our minds because new information comes to light. Please know that the last two years, the tx of BC has seen some pretty substantial changes due to more available data. Two I can think of right now are the axilla dissection recommends, as well as the recommends for radiation to the axilla.
It's funny you brought up the Vit C. I had a woman email me shortly after and rave about her success with it. She was stage 1. I think the jury is still out on supplements during tx. I've seen research that says no (most of it) and some that says yes.
I went off green tea for one tx (after having a conversation with my onc and thinking I'd negated the first few chemos), and right back on it the next. In the end I decided there wasn't enough evidence one way or another...so I drank it. Green tea especially seemed to really help my chemo SEs. (Of course we may find out later that was because it was toning it down...lol.)
All that to say...even armed with definitive data, sometimes we choose to go our own way for individual reasons. So when you run across that...don't let it worry you. In the end, you make your own decisions. This site is wonderful for support, encouragement, and information...but please ALWAYS get your Oncs input on any topic of note.
That's my disclaimer
Also you mentioned an Ooph. If you are already post-menopause your ovaries should be shut down. Oophs are generally for women whose periods return and are taking Tamoxifen. And only because there is no way to determine WHO Tamoxifen works for, and who it doesn't. Well, until and unless the cancer comes back. After everything I did to get rid of cancer, that was WAY to big a risk to take on a "maybe."
Post menopause, you should be golden. Meaning you shouldn't have to make that decision. I've never heard or read of chemo causing periods to come back...lol
IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads
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Solt,
Cancer burns more calories (at a 10 to 1 rate) because they are not only doing the normal "cell" life cycle, they're modifying it and expanding it the cycle, ....this is called the WARBURG EFFECT. There is tons of literature on this (it is 80 years old and fairly common knowledge in the cancer community). A great place to start reading about cell proliferation and cancer's unique cellular metabolism is here:
http://cancerres.aacrjournals.org/content/66/18/8927.full
If you don't want to read all that, here is one of my favorite tools....VISUAL comparison.
We once discussed that cancer "loves" sugar. Until as recently as 2009/10 time frame most researchers operated on this theory (Warburg extrapolation leads to it). Sugar is the most easily and quickly turned into energy that cells metabolize. There was even a trial (in France I believe) when I started tx that was using chemo laced with sugar for targeted therapy. (The idea being, Warburg...cancer eats 10 to 1, so the vast majority of chemo laced with sugar, would be consumed by cancer cells and not normal cells, thus targeting the cancer and less damage to good cells.)
I lost track of that study because others came out in the interim that suggest even in a SUGAR FREE diet, cancer can adapt (that's what it has to do to survive) and convert other nutrients/chemicals into energy. So sugar doesn't "feed" cancer, anymore than vegetables. Cancer will do whatever it takes to convert what we eat into energy. Period.
On the molecular level, cancer adapts to whatever is thrown at it. So if a person doesn't eat sugar, it adapts the internal processes of regeneration, to consume and survive on what a person DOES eat.
It's very technical, but I find it fairly interesting personally..which is why I try to keep up on the research. I don't discuss it here very often because well....most people want to believe they lost weight because they worked at it. (Which is still the case....this doesn't negate that necessarily)
Here is a more recent article (Jan of this year) that talks about cell proliferation at the molecular level and how it adapts for survival REGARDLESS OF DIET.
http://www.hopkinsmedicine.org/news/media/releases/cancer_cells_feed_on_sugar_free_diet
Now this doesn't mean every woman with BC will experience a big weight loss the 1-2 years before Dx. (Though in most instances it will, which is why "unexplained weight loss" is a red flag).
However, most American women are "always" watching their weight...some are very active in this effort...so before dx they are active and attribute the EASE of weight loss to that...when in reality it is cancer.
I am one of those women.
I count calories, work out, and have my entire adult life. I "assumed" the few pounds I dropped (without trying and without cutting calories) was being burned with all the extra stress and work I was doing at the time. (Even though when I looked at a pic of my husband and I together I thought...."geez, I look fragile." And fragile is NOT an adjective used to describe me EVER. But I went on with life....
Here is my extrapolation about the weight loss/gain issue in BC. Take it or leave it.
Many woman lose weight the 1-2 years before dx. They believe it is for reason X (diet, exercise, stress).
The truth is, while X may contribute to weight loss, the cancer was the real force behind it. Therefore, when the cancer is gone (after tx, not during when our bodies are under lots of stress) many women start putting weight back on. We blame tx, which is in part to blame no doubt. But, I believe women are actually going "back" to the pre-cancer weight, that is where their body is taking them. (Kind of like crash dieting for 2 years, and then BAM, you stop....weight not only comes back, it goes up!)
Of course this theory isn't popular. Women want to believe it was hard work and dieting that did it. And it WAS...partly. But for every pound a woman lost, most of that was consumed by the cancer's desire to live, and your own body's defense mechanism waging war against the cancer. (which is what all the studies show on cancer cell metabolism). Once the cancer is gone, that calorie eating monster is no longer there to consume what a person began to think as "normal" before BC dx.
Of course menopause/chempopause doesn't help the weight issue either.
There is a lot of data coming out recently about sugar not being the culprit.....and this all leads me to believe, no matter what I eat, if cancer is there, it will find a way to grow. The data says as much.
(No this is not a defense of poor eating....common sense says eating well keeps our immune system strong and possibly enables it to kill abnormal cells before it reaches the proliferation stage.
Another couple interesting (to me!) articles on cell proliferation...
http://www.sciencedirect.com/science/article/pii/S1550413107002951
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Kelloggs......
I'm kind of lost with all this free time . Last time I counted there were more than 100 cancer related trips . Not complaining.... just a little off kilter.0 -
Fascinating Ton Lee...fascinating.....
Our veterenarian told us as much in a simple way she felt we could understand when we had to make that terrible decision for our soft coated wheaten ..Ollie. She said cancer steals all the nutrients from other v ital organs and body functions in order to perpetuate growth .Hence the wasting effect.0 -
Tonlee - I guess I'm your "outlier" for the theory of losing weight since in the two years prior my diagnosis weight just kept on going up for me.
44lbs of weight!
I couldn't understand why and couldn't seem to lose it no matter how much I upped my exercise (although I was very tired all the time so that was not as successful as it should have been) and reduced my food intake :-/.
While between diagnosis, chemo and two surgeries I have now lost 22lbs of that weight, it has started creeping up again and I am fighting to keep it down. I would so love to go back to my previous size 8-10 (currently size 14), jogging 5kms/day self...
Jenn0 -
Here is my opinion I will eat what I want when I want and go on with life. I stopped smoking and yes I do miss it and enjoyed it quit when I was dxed and never looked back quit cold turkey!! Now I also drink but I drink less then I used too we have to enjoy life. I will be damned if I can't do Anything but exist . I will exercise when I want etc. IF cancer is going to get me again then so be it. IT did the first time around BUT this is just a bump in the road I WILL NOT LET IT CONTROL ME... IF you guys listen to your self's it watch this watch that do this not that come on I am all for keeping it away but I need to enjoy life not just live it. Sorry if I step on anyone here don't really mean to just venting..
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Forgot to add I am one of the smallest in my family all my family's weight is over 200lbs really big people and they are not the ones who got breast cancer I did... And I am the first in family history..
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"another question is how strongly ER/PR positive are you? I am VERY strongly ER/PR positive, which is unusual for women who are her2+ but there are several of us on the board who are like that. There are some studies out there that suggest that you might not get as much benefit from the chemo/herceptin if you are highly ER/PR positive, but you will likely get a lot of benefit from tamox or … the post menopausal one..."
Soltantio, I have not heard that about it being unusual for a her2+ woman to be strongly ER/PR positive, and am wondering if I am considered very strongly ER/PR positive with an Allred score of 6. Do you know anything about that?
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Jenn,
Yes, sounds like you are an outlier! lol I haven't done a lot of research on weight gain, but have come across a couple articles on it while looking at weight loss.
One suggested that some cancers are so stressful on the body (why one person and not the other I don't know)...that it causes copious amounts of cortisol to be released. Cortisol is a stress hormone and causes the body to store fat.
Also I've read certain cancers cause weight gain, but it is usually associated with what I consider a by product of the cancer. Like ovarian cancer, when the ovaries get swollen and large, uterine cancer as well. I think I read unexplained weight gain can be a symptom of colon cancer as well.
Seems like internal organ cancer can be either way.
Anyway, I think our cancer's toll is unique to each of us. Yes we may all be triple positive, but our bodies reaction to the cancer isn't always the same. Though there do seem to be some "common" symptoms, not everyone will have them.
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Now I'm worrying that I have another cancer that I don't know about. I've been oddly successful on Weight Watchers recently and have lost 16 lbs over 2 months. I don't think that is normal for a post-menopausal woman, but I have been eating a lot less...hmmmm.
So just back from the oncologist. I start TCH next Friday. He was struggling with his decision and was leaning toward AC 4Xs, then just H for 1 year. I told him I was worried about the A because of a family history of heart failure, and he said I made his mind up for him, he would do TCH. My LVEF is 69% so I'm starting out just fine.
He said his struggle came from the her2+ vs. the small size of my tumor with no lymph node involvement vs. my young age. HAR! I haven't been called young in ages, but I guess in the cancer world I must be. There are ancient people in the chemo waiting room. I feel like a pup! Tee hee.
So I go for "chemo 101" on Tuesday, start Friday and will definitely be on here wailing a moaning for the next few months. Please forgive me in advance.
I'm thinking of inviting friends and my hairdresser (who is also a close friend) over for a champagne and head shaving party! My buddy John said he'll get his head shaved too. I hope that doesn't cause him to lose his job...0
