Triple Negative Breast Cancer and Chemotherapy
Comments
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Hi, I'm a TN, too. I didn't know that for sure until Monday, though, when I called my oncologist's assistant. I knew I was ER-,PR-, but no one mentioned TN at all. I read that term first on these forums.
Yes, I freaked out a little. They may have told me at that first meeting after the biopsy results (lump + enlarged node); I took notes, but didn't have that written down. I was told it was stage 2a, but aggressive. I didn't get a grade number, but was told my KI 67 was 34%, which I understand is sky-high, so I put myself at grade 3.I've been told I'm lucky to have found such an aggressive tumor before it spread from the tumor itself, esp. since I found it - no routine mammography involved. The lymph node was tested by FNA, and they said it was negative. I've had blood tests, MRI, CXR, CTs, and a bone scan looking for hot spots, but can't find any evidence of spread. Thank you, God! It was deep, and I only found it because I was fussing with a poorly-fitting bra. I dithered for 2 weeks before calling my doctor.
By then, it was marble-sized, and by the time I met with the surgeon almost two weeks later, it was between 4.5 - 5 cm. As thenewme says, "f*ck, f*ck, f*ckity f*ck!" This sucker means business, but so do I, and I'm getting aggressive right back at it.I'm in Indy, too, livvienigelmom. My oncologist is Dr. Birhiray and I love him to death (ha - didn't realize I'd said that until reading back through checking for mistakes). He offered me a clinical trial that will treat me as though I'm metastasized even though there's no evidence I am. He warned it would be rough, but I jumped at it. I'm feeling very good about that decision with everything I've read here. I've just finished the first of 4 cycles of Avastin, Taxotere, and Xeloda, so I still feel pretty good. Then we rescan everything, and start the next 4 cycles with the Avastin, Cytoxan, and Adriamycin (not looking forward to those). I'll get Neulasta with certain drugs, but can't remember which right now. After all of that, rescan everything and evaluate for surgery.
Initially, I wanted that thing out, pronto, but the surgeon who referred me to Dr. Birhiray told me the tumor itself won't be the thing that kills me (if anything does, he stressed), but the spread. He said we need to leave it there so we can see how well the chemo is working anywhere that there might be currently undetectable mets. That makes sense.
Is anyone else in this clinical trial, or a similar one?
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Hey puddin'..I wish they knew how we got this stuff...I don't think anyone has a clue since we all come from everywhere, cities, country, all have different lifestyles..different ages...I guess that is why it is so hard to pin down,,,,I had a clean mammo in August of 08 and found the lump myself in Jan of 09...if I would have waited until Aug of 09..well not sure if I would be typing this right now...
About the wine..well..I like wine but I think I'm gong to cut back..somewhat...I like going to the John Hopkins site about breast cancer...an onc there answers all your questions..I like her..she says wine in moderation...she says everything in moderation,,,I hate it that if I have a bacon cheeseburger that I feel guilty about it afterward..dang it was good! Oh well..I did have a spinach salad today too..and took my vitamins..I don't know..I think we can go crazy trying to decide what to do to help us...its hard to deal with on top of everything else.
And don't be too speechless...we need you here!
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Like Riley, I just found out today that I am TN and did not realize just how bad that it is until I got on this thread. My first oncologist did not tell me the info, but my new one did today. I underwent neoadjuvant therapy (AC and Taxotere) and my tumor shrunk by half. I had a mammogram in Jan 09, but I found the tumor myself as it was too far back under my arm to be detected by mammogram. I wasn't diagnosed until April as I was putting it off as I have had cysts before and didn't think too much of it. I am three weeks post BMX and I had 9 of 26 lymph nodes affected. I am petrified now. I am still waiting on my BRCA test, but this info today doesn't make me feel very good.
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riley702
"this sucker means business and so do I"-Love it!! Your trial sounds like a new one to me-good luck with it. Next time you are at the office, pick up a copy of your pathology report and have them explain it to you, There is enough guesswork with this disease. By the way my K1-67 was twice as high and was dx'd almost 3 years ago-hope I haven't jinxed myself.
Positive thoughts to justpayton. Puddingirl, my tumor was at 12:00 too-since when is this a quadrant? Maybe yours was closer to 12:30 and this is the same quadrant. Anyway, have had a bad day and trying to be positive, guess we could stick together thru thick and thin. Oh, already did Paris -seconds anyone?
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My Ki-67 was 99% & my p53 was 100%. I have yet to read anyone else who had a Ki-67 that high, though I understand a high p53 is pretty common for TNBC.
Anyone else with this high a Ki-67? Anyone else think they should have had chemo neoadjuvantly? My onc believes in getting the tumor out first, but I didn't speak to him until after the surgery anyway (when I learned I needed chemo I knew I'd have to have it done at a facility closer to home), so a moot point. My surgeon at Sloan-Kettering never mentioned chemo first, or the TN concerns (until the SK final pathology was done--- *then* he went from being wonderfully reassuring to appearing shocked that I was TN, even though the pathology that had been done first in my home area--- and he had seen--- stated TN). Surgeon also believed tumor was medullary, as first path reported, but SK changed it to IDC NOS.
So, I went from a relatively unscary medullary dx to a VERY scary TN IDC in one visit. The Ki-67 has always nagged me though. I sure hope the adjuvant chemo hit any residual CTC hard. Some people have suggested that due to the high Ki-67 that it probably did, as prevalent thinking is that the more aggressive the cell the harder chemo hits it. Sure hope so.
Wouldn't it be great if treatment wasn't such a crap shoot for this shit?
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Boy, ain't that the truth? You can never give up, but you never relax, either. My onc encourages vitamins, but I also read about this study
http://www.nature.com/bjc/journal/v101/n12/full/6605441a.html
that suggests DHA makes tumors more susceptible to chemo, so I'm taking it both as fish oil pills and as vegetal DHA pills. I found another study
http://www.breastcanceralternatives.org/coq10.html
that says CoQ10 may restore a cancer cell's "kill switch" (normal cells have a kill switch if they're damaged, but cancer cells don't, hence mutant cells growing like crazy), so I'm taking that, too. Hey, they're all good for your heart anyway, right?
I think my motto is "Whatever it takes." Or, if it can't hurt and might help, go for it!
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queenlurker- That "quadrant" remark made me a little speechless. Does the bull---- ever end? The BS was saying what he thought I wanted to hear. And he thinks I'm stupid! It's a local f-----g recurrence. Enough with all that patronizing bull----!
Titan-I am not stoned but really starting to feel like this is the real life "Invasion of the Body Snatchers" going on here. You go to sleep then wake up and it's there. Sounds just as believeable as all this other bs that the doctors tell you. They don't know either. It is all just trial and error. OMG!!!
Read some of those old science fiction novels. I think some of those writers knew something. Almost like they could see the future. If they were still alive maybe they would be able to help our doctors.
That's my rant for the day. Now I'll be good. I promise.
I was drinking a glass of cabernet about twice a week, but still felt guilty about it, I gave up eating tofu because of the 2005 DX, I almost gave up eating lamb chops, I have definitely given up eating apples and that was my favorite snack, I buy organic as often as I can. It didn't help.
Puddin'
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riley-- where do you obtain the DHA? Is it a supplement? I take extra Vit. D and MCP. Hubby adds tumeric to some meals also. I am very selective in what I supplement with and have always used Biotin, a multi vitamin, & fish oil also for general good health.
Puddin-- why no apples? Because of the glycemic index?
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Yes.puddin..why not apples? Because of the peel???
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Titan and hhfheidi- I knew you two girls were not going to let me off the hook for that comment!
Let me start out first by saying, that we all have a common thread here. We eat, breathe, and drink water.
I am a gardener, I grew trees, flowers, and vegetables, as a hobby, when I was healthy. The year before the first cancer came, in 2005, I dusted my roses and other flowers with Sevin. I knew not to dust my vegetables with it. I remember reading the label warning. It said put on a mask, long sleeves, long pants, cover your feet, and wear gloves. It also said something about causing cancer in Califonia. But I was obsessive about my garden I just wrapped myself up and went out there and dusted my flowers with one of the deadliest pesticides that there is.
I also take college courses in horticulture, just to keep my mind stimulated. So this is not a rant. I do some public speaking and have come in contact with other women who have been florists or gardeners, who "dusted", and they have had multiple breast cancers also. Not many, but enough to take notice of. I used Sevin the following year in my garden and I got another breast cancer that year. I haven't used any pesticides since.
One day in class, we had a guest speaker, the discussion was about commercially grown apple trees and diseases and insects...............I threw up afterwards. I remember interrupting the lecturer and asking him to repeat what I knew I had heard the first time........Anyway, a couple of weeks later I was Dx'd a third time.
Read between the lines girls.You two have gotten enough information out of me.
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OK..my dh is manager of a research farm here in Ohio through a state university....They grow apples for research, among other things....I know that they can only use pesticides approved by the government..but years ago he used to have to go out and spray the apples...he wore a protective suit with a mask and a tube for breathing. There was also an "emergency" shower in one of the buildings to use in case of an accident...now I'm kind of freaking...but the thing is I never ate apples until after I was diagnosed! And I scrub them before I eat them.
Well, anyway you got me thinking...
We are thinking of putting in a garden this spring...I don't want him to spray it with much...but with deer and rabbits and what have you around...not sure how much yield we will get from our garden.
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Titan- I started eating them after I was diagnosed also. It is no fun peeling them, because the skin is where all the fiber is.
I have a story similar to yours, just didn't want to put it "out there" if you know what I mean. I actually wrote it and then decided to delete it because I didn't want to scare the crap out of you.
Puddin'
PS: There are shrubs and some other vegetation that can be planted around the perimeter of your garden to deter rabbits and deer, not 100% successfully, but can help a little. Anything is better than the poisons. Use your search engine, I prefer Google, before starting that garden.
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You can pee on them too! A proven deterrent!
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Damn... what's wrong with eating an organic apple? That's what I do, and I ain't dead yet. I live on a small horse farm and the only thing that bothers me about country living is the damn crop dusters flying overhead. You have to figure that stuff gets into the yard, house, pool no matter what they do. I also have a reverse osmosis drinking system for water purification, as nitrates from the farming community is another concern.
I grew up on Long Island, but if I'd had my druthers I would have stayed in Rhode Island; we love New England. Now I am in "lower, slower" Delaware but are thinking of moving after our soon to graduate college sons are settled into real life. I truly believe I would not have gotten this damn TNBC if we'd stayed in New England.
PS- this is getting to be my favorite thread in here. We are all quite vocal and interesting. Shall I post more horsey pictures?
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hhfheidi- Of course you can. I love horses.
Puddin'
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Well, as you can see... it's not a horse, but I thought you guys might get a kick (can't say hoot) out of one of my house guests...
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Ok...I know I may have chemo brain but is that a FREAKING EAGLE??? P.S. he doesn't look very happy..
We are pretty vocal aren't we? I like it!
Yes..you can eat apples...if we freaked out about everything we eat well.....The US really does have the safest food in the world...I work for a 13 store grocery chain and I can't tell you enough what we go through to adhere to government policies.
There was just a recall on vegetable protein...that is in alot of things...I really thing our food here in the US is very, very safe...my dh remembers eating RAW ground beef back in the dark ages.
And..being in the grocery industry..well..organics is huge but you really are safe to eat the non-organic food...
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Yes Titan... you get an A+--- that *is* a freaking eagle!
I am a volunteer for a local Bird Rescue and this was one of my "patients" before she was transported to the facility. That's what I do... field retrieval and stabilization prior to transport.
When I'm not doing horsey things of course.
Stay tuned... I'll post another "quiz" photo later. lol
Can't always talk about cancer, right?
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hhfheidi, I got both the DHA pills and the fish oil pills at Wal-Mart! Spring Valley brand; The DHA is "plant-pure omega-3 DHA" 450 mg softgels, and the Fish Oil I got was enteric-coated, 1200 mg softgels.
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hhfheidi- The eagle is absolutely beautiful!
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I take Omega 3 but just ran out. So if I find DHA, would that replace the Omega 3 or is it one in the same?
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OK, just re-read the articles on DHA and it sounds to me like this product's usefulness applies more specifically to assisting the effectiveness of chemo in reducing metastatic tumors. In other words, if you already have mets and are being treated. Am I missing something?
Google Modified Citrus Pectin. The ACS has an article on it. MCP is supposed to help *prevent* cells from being able to cling to visceral organs, hence lowering the possibility of mets.
We all do what we think is right, within reason, to protect ourselves. But this stuff drives me crazy sometimes!
Off for the first of four follow-ups this month. It never ends...
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hhfheidi, the only thing you're "missing" is that I'm trying to cover my bases with an aggro tumor. I went from small palpable lump to 4.5 cm in about 3-4 weeks. I opted for the clinical trial that treats me as if I already have mets, and I see nothing wrong with taking a heart-healthy supplement that might help zap currently undetectable mets. It also helps me to not feel so powerless and out of control. We all have our ways of dealing...
I'm trying very hard to stay positive and I don't want to have any "damn it, I should have..." regrets if this gets worse. I'm not popping every quack pill I read about, but I have decided I will do anything I can do to improve my odds, no matter how difficult or inconvenient (this is neither). If this may help me to do that, I'm going for it.
Thanks for the info on MCP. I'll definitely google it.
ETA: I don't know for sure, Sugar77; that's why I'm taking both.
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Riley - I think Turmeric is supposed to be good, too. However, I'm not sure of the dose or if it's to be from the spice or a supplement. It might be worth looking into.
Sherri
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Thanks, Sugar. Is the turmeric an anti-inflammatory? hhfheidi, where do you get your MCP and how much do you take? Googling madly....
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Just got back from the store..couldn't find any mod. fruit pectin. Would it be with the vitamins..or the canning supplies (hee hee)...I also thought about buying some tagament.. I agree with you Riley, I guess it can't hurt to take these vitamins..in moderation. It does drive you crazy sometimes trying to figure out just what is right to take and to try to keep the fear at bay....
I did buy some folic acid though....you are supposed to take it if you drink alcohol..so I thought what the heck!
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Well, we don't have to worry about taking it prior to getting pregnant, anyway. (a joke!)
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The research done with Tumeric is that they injected tumeric and piperline, (found in gournd black pepper) in mice that were infected with breast cancer. the mixture got rid of the breast cancer. but the reason why I am eating tumeric (most benifital with fresh gournd pepper) is because women in india have a very low occurance of breast cancer. I have the artical saved about it and will look for it!
I have triple negative to and have researched everything. I am in chemo right now sono supplements. I thought well I am TN then I have a low vit D level but nope it is 32. I did talk to my onc and will be starting asprin every other day after chemo. I wish you all the best luck and I know we can do this together! Hope you have a great day!
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Well yeah, we don't have to worry about THAT anymore...!
So..does anyone know where to find this modified fruit pectin?
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Thanks, mom2Bnegativex3!. I don't dislike turmeric and LOVE black pepper, so I'll season as heavily as I like now!
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