Calling all TNs
Comments
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Hello Titan and friends,
I just wanted to say hello to all of you and to congratulate Titan on her very successful thread. I have not posted in a while, but I do read your thread regularly. I was wondering whether you have been reading about research into the diabetic drug metformin, as a possible targeted therapy for TNBCs. What information do you have?
I was also wondering what information you have about enhanced glycolysis in TNBC tumours that it is speculated is probably related to the aggressiveness of these tumours.
From the UK I would like to wish all of you a belated very happy Thanksgiving Day. I lived in Canada for 17 years and have happy memories of Thanksgiving Day there. -
I hope all you wonderful gals had a very happy Thanksgiving day, and to all my Canadian sisters, I hope you had a great Thursday!
Pink Pee - I agree with Heidi in that I do not feel due to her position/or having money gave her any better treatment than I had, or any other triple neg that had an onc that knows how to handle triple neg cancer had. I think, if anything, she might have had easier access to the top doctors in NY and possibly an easier time of getting appointments made.
The biggest gripe I have with Jennifer and her public interviews of her triple negative diagnose and treatment (and I followed her whole treatment which was televised) is her adamant insistence that she has beat this beast and is now "cured," and has been told this by her doctores. Cured??? I only wish it was that easy. I find it hard to believe that any doctors from one of the highest rated institute for breast cancer, especially triple neg, are telling her she is cured. Not one of my doctors would ever deem me "cured." The best I could get from any of mine was that I was disease free (to the best of their knowledge) and had a good prognosis from an early diagnose that I MIGHT not see this beast again.
If I had a public platform to speak from, as she has, I would be pushing the enormous need for further research for drugs to help us live- and for PARP to be more readily available to those in great need of it, NOW - not having to be assigned a number and wait and hope to be called while they are still alive. Her adamant insistence that she is cured and has beat this nasty triple negative disease due to her aggressive regime just began to get on my nerves a bit as we all know only to well, even with an early "good" diagnose, that all of that could be shot to hell in NY minute.
While no type of breast cancer is a "good" type, we all know that ours always comes tagged with that "poor prognosis" label causing us to live in a near constant state of anxiety about anything we feel. All in all, I just find her public statements regarding triple negative to be totally unrealistic.
This is all just my personal opinion and is not meant to stir up any controvesy about Jennifer. In the end, we all have to get through this nightmare the best we can and I certainly wish her nothing but the best of outcomes forever. She is much too young to have been stricken with this ugly disease, and to be diagnosed as a Stage III right out of the gate. I just wish our type of cancer was as easily "cured" as she leads the public to believe.
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LRM216- Well said! I did not realize she was putting such a "pink" spin on TNBC. What a shame. As you said, she is in the rare and fortunate position of being a treatment advocate for TNBC and has dropped the ball.
I am a Fox News viewer but, it appears Jennifer has drunk the Kool-Aid. How unfortunate.
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Fun reading all of your posts.
It appears that some of you wonderful ladies have done the carboplatin. I will be starting it on Tuesday when I get back to Indy. I'm not sure if I will have the GEMzar also. It was undecided before I left. I am now hoping I get both after meeting with Sloan Kettering oncs.
What are the SE's of carboplatin. I read about them but I would like to hear from those who have actually experienced it. I hope it is not as bad as the AC I did and hoping it was as easy as the Taxol I did. Well not easy but not as bad as AC for me. I know SE's are different for everyone.
I hope everyone is having a great week-end.
Laura
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slcst12: Just wanted to make sure they do those before you even consider surgery! It is the safest way to go.
FranceLux is the same place and they sent me a lovely signed card, too. It made me cry at the time. Their scarves are gorgeous.
Tif: Be sure to email them regarding getting a free scarf as I already promised it to someone else--You can pick one that you like for yourself! It's completely free and they are very expensive to buy.
Happy belated Thanksgiving Everyone! Spent yesterday flying and I was wiped out. Just missed the first snowfall of the year there, but it was a very turbulent flight home, so I guess it's better we got out before the snow.
Sugar: Don't turkeys run wild in Canada? Or is that just Deer and Moose?
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Thanks MBJ-I will send them an e-mail!
Tiffany
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Hi LauraJane.
My daughter was TN and did A/C.
Two years later I was diagnosed HER2/nue. I was a part of research trial at Dana-Farber. One of my chemo drugs was Carboplatin. I honestly don't know how anyone who is on more than one chemo drug can tell which one is causing which side effects when often the potential side effects are similar.
As a comparison, my daugher and I both fell in the minority in different problem areas. She probably had more reactions to her treatments with A/C than I did on T/C/H (Taxotere/Carboplatin/Herceptin). I really didn't feel that bad....just exhausted. Ultimately I did require a blood transfusion and after rounds 5 and 6 my immune system seemed to go into meltdown. But!...I was never once sick to my stomach. It was just the rest of me that fell apart. I hope that you respond well to your treatments and your side effects are very few!
Blessings,
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PS. Very wise move checking in with the onc. at Sloan-Kettering. ...Very wise!
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I have the email address for Erin w/France Luxe on the previous page.
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LRM: Very well put. People assume we are "cured." This was a bump in the road, a medical crisis, now done, right? Even my DH said last night he was thankful I had "gotten through it." Well, that's not necessarily so. I try to do my little bit to inform folks when we talk about this, not to be gloom and doom, but to educate. I don't know the TV gal you all are referring to-- I don't watch TV news -- but I wish people with a public platform would use it more wisely.
Hope everyone (US) had a good Thanksgiving yesterday. My DH doesn't like turkey, so I'm promising him lasagne for his post-holiday feast.
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Since we're on the subject of discussing our progress, does anyone have suggestions on how to respond when someone says 'So you're cured now?'. When I try to lightly explain its gone for now, 18 months is our critical time period, etc., it sound like I'm hanging on to the tnbc diagnosis and fear, but its hard for me to say 'yeah, I'm cured'. As per the previous posts, I agree its better to give an accurate response for our specific bc. I was thinking I might say I'm NeDap...no evidence of disease at present. ???
Hope everyone had a nice day yesterday...my son left his fiance and her family to drive 4 hrs. round trip to spend the entire day with me. He's my only family so I was happy, happy, happy!
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Ruth, I don't use "cured" and I'm afraid to use "survivor" (don't want to jinx myself and besides, how do you know you've survived until you die from something else?)
I know how you feel though. Mostly I say, "No, not really, but I am learning how to live with the fear of recurrence." (or words to that effect)
What I want to convey to people is simply there are no "get out of cancer free" cards out there. Once you've been through the experience it is *never* over, regardless of what one's actual stats/prognosis is.
Cancer, the gift that keeps on giving.
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I just say - my cancer is gone and smile and walk on
thriver works better for me than survivior
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Yeah, I wish I could do that... it's probably easier, but I can't.
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Laurajane - my father had a regimen of Gemzar/Carboplatin for bladder cancer. He was 76 years old at the time and tolerated it very well. He didn't lose his hair either. It just thinned ever so slightly. My SIL had Carboplatin/Taxol for endometrial cancer and she didn't have a problem either. She had some neuropathy but it was attributed to the Taxol. I don't know of anybody first hand who has had this regimen for BC, although I know it's not an uncommon regimen.
MBJ - your post made me laugh...I've never seen a wild turkey (...or a moose) here in the Great White North! I wonder if they fly? Heidi must have a photo of a wild turkey for us...lol
Ruth - that's so nice that your son drove to far to see you for Thanksgiving. What a nice day you must have had.
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Laurajane, I had carboplatin/taxotere. As someone noted earlier, it is hard to differentiate between carbo and taxotere if you're taking both at once. But I tolerated it pretty well (considering... cause, you know, none of it is a total walk in the park) and worked through my entire 6 rounds of carbo/taxotere. Metal mouth, occasional thrush, very limited nausea (got great drugs!), hair loss (sorry... at least I did...), some very limited neuropathy (which has subsided, but probably taxotere), funky nails towards the end (again, probably taxotere), normal GI issues, tiredness. But very tolerable all in all. My imagination was much worse than what the SEs turned out to be...
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Sugar-- R U kidding? I've treated them (but don't have a picture--- sorry). Usually I transport birds up to a nearby and very well-respected bird rescue who specializes in indigenous birds and their release back into the wild.
A few years back though, we had a female who insisted on walking alongside the road a mile down from where we live as if she owned it. And she did, as far as I was concerned. Sadly, she disappeared around this time of year. I really missed seeing her and will always wonder if she wound up on somebody's table.
Man, I have been SO lazy today. But I've been invited to go riding both days this weekend and may just do it. Last week felt so *good*!
PS- you bet they fly! More than I knew until I saw an entire flock of them zoom up into the treetops.
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My mom has a bunch of wild turkey and deer around her southern Indiana home. As for those who ask some variation of "Are you cured?", I just say, "Hope so!" and change the subject. If they push, then I go into the "no guarantees, NED, etc." explanation.
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Hi!
I'll say "I'm doing OK for now but I take one day at a time". I am tired of explaining TNBC to someone cancer free. Most individuals know about BC but are trying to get information about my BC. I don't know how long I'll be battling BC but choose family time over talking in general about BC off the on-line boards. I just came up with an early New Year's Resolution. Good for me!
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I don't use the "survivor" tag, or refer to my current status as being cancer free, as I too feel as though I will jinx myself. But I am also getting tired of having to explain this damn triple negative cancer to all those that just assume because my treatment's been over for a year and I'm still alive and showing up for work everyday - that I am therefor cured and no longer have to worry about cancer. God, how I only wish.... I especially love it when someone that has no knowledge whatsoever of what breast cancer is really all about, and have never even heard of triple negative breast cancer, glibly says to me - "Oh, you will be just fine - I just feel it in my bones." I so wish I could just kick them in their arse.
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I'm going to a birthday party next week and have not seen a bunch of the girls for ages, so there will be a lot of chatter. I'm going to use the 'hope so' response, with a big smile.
I had a 2 hr workup for my recent back surgery (4 weeks after my last chemo-yikes) and the intake lady went on for like 20 minutes how she had cancer and how wonderful it was and changed her life, blah blah blah. I really wanted to tap the table and say 'hey! back to me!',,,.lol. THEN she wraps up with, you've got such a pretty smile, I am SURE you will beat the cancer. If only....hahaha
Btw, I am just exhausted lately. Back surgery was 3 weeks ago, and I got my port out Thursday. I live alone and care for myself. I am taking it real easy (don't leave the house except for 4 tiny walks) but I can't keep my eyes open for about 3 hours in the afternoon and I'm sleeping a solid 8-9 hrs at night. Maybe its leftover triptofan (sp) from the turkey!
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Isn't ignorance bliss? All these well-meaning people falling all over themselves with concern.
Forgot to mention that my *real* cut to the chase answer is a quick "So far, so good" response (followed by a change of subject).
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I have the same problem already. The moment someone learns of my BC, the first thing they ask is "do they think they got it all", or "did they get it all". I'm starting to learn to come up with a more simple answer so I don't have to explain everything, but at first I would say yes. Then that would lead to the same type of thing you others have experienced... I should be fine, or cured, or whatever. I would explain the entire thing to the person then, in an attempt to educate them. What should have been a 5 minute convo, turned into 45 minutes with all the questions! Explaining about different types of cancer, different treatments, BRCA and what that is, different grades... I too get tired of explaining it all. Recently I've just told them I feel great (true), and as far as we know there's no more left. They can draw up their own conclusions or read up on it.
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Ladies, I hear what you are say. The sad truth is that before "our" diagnosis how much did any of us know about bc? I remember how helpless, ignorant, uninformed and "doomed" I felt when my daughter was diagnosed with TN. (What???? What's that?) Obviously, that was a turning point for our family and the beginnning of our education about bc.
When I was diagnosed with HER2/nue, I was not nearly as "splattered" emotionally. I was more calm with my diagnosis and better focused on what to do and where to seek treatment. My daughter's diagnosis likely saved my life!
Cure? Our daughter was one of a selected group of women to meet with a research doc at Dana-Farber. The doc did not know the background of the women she was adddressing. As she spoke about the different types of bc, when she began to talk about how little was understood about TN she said that as little as was known what was know was this: After 3 years it almost never recurs. Percentages of recurrance drop dramatically. After 5 years you can really relax. Tracy was 3 years one month "well" when she learned this!
I'm 3 years out from my diagnosis on HER2/nue. At my last appointment my surgeon told me I was "out of the woods" and added that those words did not mean I would never have a different cancer diagnosis but at 3 years, I was "perfect!" (his words.)
I think one of the greatest lessons I learned as I was living with bc, was "appreciation." I don't take much for granted. I do look at life differently. I refuse to live in fear or waiting for the other shoe to drop. What can I do about it anyway? I am much more at peace and "thankful." I share our story whenever I get the chance and encourage both men and women to have (at the least) a basic understanding of this disease. You cannot make good choices while running scared.
Blessings,
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When I was first diagnosed and as ignorant as most, I was thrilled that I was TNBC thinking that it was a good thing. The men at my work (I was the only woman) kept telling me how BC wasn't such a big thing anymore--they just take out the lump and you are fine. They told me this repeatedly as each day, the more information I had the more scared I became. They finally shut up when I told them, no, I was not eligible for a lumpectomy, that I would need months of chemo and would lose all of my hair and maybe my fingernails and 3 weeks after that I would be having a mastectomy! Now, a year later, (I quit my job upon diagnosis) I had to explain to my former boss that I am still not up and completely running and that I will no longer be coming back or working full time for a while. My health is more important then money, even though we could really use it. When people ask me, I just say it's gone for now and change the subject. If they push for more info, then I will go into a longer explaination, but mostly I feel as if people are trying to make themselves feel better.
Sugar: LOL! Even though I have been to Canada and the wildest thing I have seen there is a motorboat for water skiing, I always, in my head, see deer and wildlife. Call me crazy.
Heidi: I am so glad that you will get to go riding! I have just made a few friends who have horses and I see this hapenning in my very near future.
Ruth: So happy your son came to see you!
Tif: You are welcome!
Hope everyone enjoys the rest of the weekend.
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Someone here shared this with me - "I'm dancing with NED" (no evidence of disease) and sometimes I'll say that... but as Kathy wrote - ..."how much did any of us know about bc?" before our dx?
If people really want to know, they keep asking questions, and I guess I'd like to share truth rather than what (Jennifer) is sharing. I do wish the best for her, but I just read an article about her believing that exercise and diet will make the difference... I would hope that a reporter would really check all her facts first.
TN is not even understood here at this website by most non-TNs so I guess we can't expect much from the rest of the world. After all, it was only named about 10 years ago and let's face it - we're slow learners.
BTW - wild turkeys are quite abundant here in Northern California. One was on the Thansgiving table supplied by my hunting nephew.
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Another triple neg here ... found lump myself at at 48. And for those of you wanting the good news: I celebrated my 3rd year without recurrence in September !!! Oh chit - that means I just admitted I'm 51 now - haha. Had double mastectomy, positive nodes, chemo and radiation. Yup, did the whole meal deal. For those of you currently in treatment - althought in many ways it feels like just yesterday, there are indeed now days when I don't think about it. Imagine that !! I never thought it might happen but as I reflect - there are days when I don't have one, not even one thought about cancer. Lingering issues - LE that fortunately is fairly well controlled, and the forever and ever taking of a cummadin pill because I managed to acquire two blood clots. And yes, what is it about the hair thing - geez. Once we lose our hair, the person looking at us in the mirror is a cancer patient and we cannot hide that. That's my observation anyways.
Follow-up is all over the map it appears. I have a physical once a year ... that's it. Oh sure, if there is something bothering me - door is open, but I have no scheduled scans, no MRIs, nothing like that. I used to feel that I was dropped into a black hole - saying, good-bye and good luck. What the heck? You wanted to know about my every bodily function every day and now it's just good bye? That was a tough one mentally. But now as I reflect - I am thankful. I no longer live until the next "test" or until the next all clear. I get up, I go, I continue on. I do not have the dates in mind.
Okay ... I've rambled on enough. Hang in there ladies ... some days suck to the max but if I'm honest - some did before I had my diagnosis - haha. Keep up the fight - you're not in it alone.
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I am asked often if I am cured and/or cancer free, to which I reply yes and if I'm asked how I am doing I say fine. There are those that are more curious than others and will persist with questions and I answer the best I can or if I'm not in the mood I find that by asking the other person questions, how are you, the kids, job, etc helps. Most of the time they "get it" and quit asking. TN is very misunderstood by many including doctors not in the oncology field. I really don't even try to explain the whole TN thing unless the person I'm talking to keeps asking and wants to know why I'm not on Tamoxofin, Armidex or something along those lines. Prior to BC I knew nothing, hell I thought there was one type of breast cancer and had no idea that there were so many types, treatments, that there was grading of the tumor in addition to staging and then the whole ER/PR HER2 positive negative thing...... With that said, I don't know how I would have reacted to a coworker, friend or family member in my situation, but think it would have been with compassion, help and I'm sure a few fumbled unintended mistakes.
I know this may sound weird, but I've also come across people who seem to want to be friends with the BC girl......like it gives them some greater insight or makes this special. I find this to be really odd, but then again I guess it's that same personality of one upmanship. Oh well....that was my little rant.
vickilynn - I've never had fresh wild turkey, only the frozen kind. It must taste so much better.....
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I am cracking up with all of "turkey talk". The day before Thanksgiving I had 14 parade through my yard. (That was a mighty bold thing to do! Good thing I had been to the store already!) I've never tasted wild turkey but because they eat acorns I've heard the meat is "different" tasting. It is common for me to see deer in my back yard too. (I don't eat them, either.)
One night while I was really wiped out from chemo I heard a thud against our front door. Immediately I called to my husband to go to the window and start yelling. (He thought I had just lost my mind!) It was a black bear after the birdfeeders! ...Country living!
I know that a bc diagnosis feels like the worst thing a women can ever hear. My daughter and I share an interesting story. I think the worst day of my life was the day that my daughter received her first round of chemo for TN and I could not be with her. I was a total emotional wreck. And her worst day was 2 years later when I received my first round of chemo for HER2/nue and she could not be with me. Emotionally she felt everything she went through when she had her first chemo.
If there was ever a young woman you would have crossed off the list as being a potential candidate for bc, it would have been my daughter. She's a runner, never smoked, wine with dinner on occasion, "Mediterranean diet"...if lifestyle was all that mattered, she should have been exempt from bc. The one area I question is: "what about stress?" Her's was off the charts! And then 2 years later (after non-stop stress with a pile of issues and Tracy was battling TN) I was diagnosed.
Blessings...
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Hello,
Happened across your post and decided to chime as well. I was dx Jan. 2009 and at this moment can't remember specifics
I started with surgery in Feb. Chemo in March and Radiation in July. My chemo was ACT (taxol) and the radiation burned part of my lung so they reposistioned the beam for the rest of the tx. The scary part for me has been the follow-up ... I'm still learning who's supposed to be doing what and I'm not always happy with the answers I'm given. I've been told I'm somewhat of a 'princess', but my response to them is always 'if it was you, you'd be doing the same thing.' BTW, there are quite a few TNs on this site, but the thread has been inactive for awhile. I kept checking back, but noone was posting anything, so I began looking answers on other threads. I've found other threads to be helpful, but really feel better when I can chat with, share with and relate to other TNs.
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