Calling all TNs
Comments
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Fighter: I don't think there's a whole lot of difference, if any, statistically between prognosis of different races. Please try not to let this frighten you. Also noticed Heidi's comment above, so I hope you're able to find that thread. When I was first diagnosed, everything I read said that triple negative seems to hit AA moreso, but from what I've seen, that statement is entirely incorrect. I think a more decisive factor would be the person's age, because of the genetic predispostion possibility. Even lymph node involvement seems not to really matter with TNBC, while certainly if it's found very early it's supposed to be a very good prognosis, it's really a roll of the dice. And everything changes quickly... one day this is good and something else is bad... the next it's the opposite. So try not to feel like the color of your skin affects outcome, because I really don't think it does.
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Hi ladies hope you are all going well,when I come here it makes me sad and soooooo mad about what you all have to put up with and it is not normal ....to many woman diagnosed....there is something wrong in this world you believe it......the Drug Companies love it as their bank accounts get bigger, and still no cure....crap.
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Friends:
So nice to hear from you - how have you been holding up. I think of you often and pray that you are surrounded by loving family,friends and getting comfort from the bond you shared with your daughter. That you will never lose, nor can anything ever take it away from you. Please post and let us know how YOU are.
Love,
Linda
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Hi all of you wonderful women. I go for the 2nd to last chemo tomorrow. I felt so good today like I can really beat this. I meet with my onc. tomorrow too. That is, if we don't get this terrible ice storm predicted. I hope to ask her for a pet scan to see if this chemo cocktail is working. Funny I was given a year at best when the AC and Taxol didn't work for me but I hope that means that the carbo/gemzar is what I was meant to have in the first place. I have chosen to believe that this WILL work for me. I have been afraid to post because the AC/Taxol has worked for so many of you that I didn't want to bring fear to those starting it. But I really miss all of you and know that works for most of us. As Titan put it there are a lot of lurkers out there. Has anyone else out there done the AC and Taxol and found that their cancer did not respond. Well, I should make it clear that the Taxol I believe started to work the first 3 weeks. I felt my tumor decreasing but then it started growing fast. So I had surgery and they realized it had spread to 14 out of 20 lymphnodes at surgery. My onc told me that the chemo cocktail I'm on now works in a different way so I believe it is going to work. Again are there any lurkers out there that are going thru this?
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TNBC ladies - would you take an aromase inhibitor like aridimex with zometa (via infusion) if you were a very small 5% progesterone positive, which is what I am? With the bad SE's from Aridimex and Zometa (which is given for BC metastasis) would you consider taking it, if your Onc. wants to give it to you?
I am so confused. All the clininal trials are saying these two combinations may not help with disease free survival. I read somewhere that one should consider anti-hormone therapy even with a small percentage of positive hormone.
I have always felt (my very own observation) is that I am really low on estrogen and my cancer has come about due to that. This drug as well as Tamoxifen is supposed to decrease estrogen in your body. I could try the Aridimex and leave it if I felt very bad SE's, but I am so scared of Zometa which is given by infusion, only twice a year, every 6 months. Once something is infused in your body, it can't come out, it remains there which is so scary.
Anyone out there has any higher wisdom on this subject, please share with me, as my brain has stopped functioning. Can someone please make my decision for me, pleeeease? I don't know what to do. I feel so strong and healthy after my chemo, am exercising every day and am developing some muscles. Eating right and feeling great.
Thanks.
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Laurajane - I am sorry for my post, which was not answering your question, rather changing the subject. When I posted, I didn't see your post there. Anyway, what I wanted to say is that I find you are a very brave woman. I can just imagine what it feels like if the chemo which works for others doesn't work for you. I have always wondered about women like me who has done AC & T dose dense, after surgey, will ever really get to know whether chemo really worked or not. I guess I will never know. I feel that there may be many of us for who Chemo doesn't really work, but we will never know since they were given after surgery.
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Good to hear from you LJ...I'm becoming more of a lurker somewhat than a poster...I read all of your posts everyday and think of ALL of you all the time...it's weird.sometimes coming on here is something I NEED..just like breathing..and sometimes..I just need to read and go away..the emotions of a cancer DX are always there..but somedays..I just don't even think of it..is that a good thing? Am I in denial? Maybe..but I like it there.
Went to my treatment center today for a blood draw for Vit D...just chatted with the lady about the Super Bowl..then left..didn't even look in the area where the chemo patients are..I think that is the first time I've done that..
On another note..the mammo dept. is close to the blood place (I call them vampires).and I heard a nurse call a lady on the phone about coming back for another mammo and an ultrasound if needed...I could tell by the phone call that the lady on the other end was freaking.. The nurse/receptionist then wished her a good vacation! I told my DH if I was this lady I would demand to come in NOW...I'm sure you guys all remember that "come back for more pictures" phone call...I just wanted to jump on that phone and give this lady a hug..I'm sure she won't have a good vacation..
Sorry to change the subject here...just talking..and you guys know I like to do that!
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Laurajane, I am also hoping for the right chemo combination. I started with taxol/carbo and first scans after 3 cycles were good, but then things got bigger again. next was DD A/C but was stopped after #3 because scans showed spot on rib - so I was wavering between 3C and 4 but now am officially a 4. I'm on zometa/xeloda/lexempra. I have looked around these boards and there are quite a few who say AC did nothing for them. Everyone is different.
Why did your onc tell you a year? Did you ask? i hate when docs try to put an expiration date on ppl. I believe anything can happen and anything is possible. There is a woman on here who was given 3mos - that was 5 years ago. I also know a guy who was given less than a year for liver cancer, 7 years ago. And very sadly, a friend who was stage2 BC, told she was fine after finishing treatments, barely made it 2 years. It's a crazy disease.
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Lovelyface- I was wondering the same thing. But once it is out of you I think it is better. I wish now that I had had surgery first. Gosh, I wish I could give you the answer you want. I think you have to have total faith in your onc. It's great that you are feeling good and excercising etc. Go with your gut. I know that is so easy to say but I believe you have to go with it with everything you've got.
Titan- Thanks for posting. I agree I would of wanted to do the same thing. I feel sad for the receptionist, nurses etc that have to make that call. I'm sure it is hard for them too.
Lindaa- Thank-you for your post. The majority of women that I have spoken with have had good results from AC combined with Taxol, so far. I'm praying that they have long term benifits. I'm hoping the chemo cocktail your on now works for you. I am now and have been trying to ignore my prognosis that I was given last Sept. My prognosis was given I guess because of the signifigant growth of my tumor and then spreading to my lymphs in such a short time while I was doing chemo DDAC and then Taxol. I am still strong and kicking. You are right I have heard many happy scenarios from other people given the same prognosis. I spoke with a friend tonight that has a completely different kind of cancer but he was given 6 months and that was three years ago. He sounded great . I love the inspiration. Lets all stay strong. We can beat this.
Thank-you.
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laurajane - I was really surprised to hear that taxol had started to work at first and then it didn't. There is someone I know who was given Adrimycin/cytoxan 4 doses, but her tumor didn't shrink. She was doing the neoadjuvent like you, chemo before surgery. First of all I was wondering why the doctor didn't notice that the tumor didn't shrink the second or third dose, why it had to go on for 4. She wasted so much time, and time is of essence with BC. She was put on Aridimex, being post menopausal. Aridimex is not chemo, but just an anti-hormone therapy. By the way she is not TN, but hormone positive. I am going to see her tomorrow, so will ask her why she was not given another chemo cocktail. Laurajane - if you are feeling so positive about carbo/gemzar, I am sure it is working 100%. I hope your PetScan comes out all clear. I am sure you have also changed your lifestyle to reduce fat, artificial food and include lots of exercise. While they are trying to treat our cancer, I believe that we need to work on our bodies so that it doesn't produce excessive estrogen, or try to balance whatever brings about cancer. You go Girl!!!!!!!
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Laurajane: I'm glad to see you here and feeling so well, as well as almost done with chemo! I'm also glad you've felt so good that you haven't been here. I always love knowing someone drops off the forum because they're getting on with their life... as it should be.... and then every once in a while, perhaps a couple years even, they pop back on to let everyone know they're still around, and it gives inspiration and hope to those just starting the journey.
Titan: No, I don't think you're in denial. I think you're living. Glad to hear that.
As I sat waiting for my last chemo, a slightly older woman walked in and sat down. I have strange knack for feeling certain feelings from other people, but I said nothing. Her husband came in, sat down, and I overheard him asking her if she was ok... which clearly I felt she wasn't. Then I began wondering if this was her first time, or a recurrence, she was clearly fearful and worried. My question was answered when her husband walked up to the receiptionist desk, and the woman walked over to me, reached out her hand, and introduced herself with slightly tear filled eyes. It was a recurrence, but not bc... lung. 8 years ago she was diagnosed with small cell carcinoma of the lung, and now it is squamous cell, lymph nodes involved, dx on Dec 23rd. She was completely shattered at the news. She had been labeled "cured", and been discharged. At only 67, she wasn't sure she wanted to do chemo again, and I tried to encourage her that things had changed substantially in 8 years with drugs to help with SE's as well as fighting cancer. We weren't too far from one another during the infusion, so I was able to hear she will have Taxol/Carboplatin. I felt such mixed emotions. I'm not sure I will ever see her again.. we exchanged phone numbers but not certain if she will respond via text or email. I hope she beats this and is able to spend the rest of her life with her family. Her name is Shirley.
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Getting dx the 2nd time with cancer is a very scary moment. I was completely dumbfounded (so were the doctors). I hope there is a day where no one gets dx with cancer or at least they find a cure!!!
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Thanks for sharing, Angelisa. My sister's father-in-law "beat" lung cancer once, only to have it come back 12 years later. Our father was diagnosed with lung cancer between the two, and as my sister's only experience with lung cancer was the "miracle" cure, she didn't understand why my reaction was hysterics. I'm a respiratory therapist. Our father lived 9 months after diagnosis, and when he went, he went quickly and peacefully. My family still has no clue how lucky we were. He passed after one day being mostly unconscious, after the previous day being fairly comfortable on 100% oxygen in the ER. Comfortable enough to chew on a resident who wanted to do a CT "to see what's going on in there". Dad told him, "I can tell you what's going on; I'm dying of lung cancer!" and then mumbled "Idiot." under his breath.
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Linda- Thanks again for sharing. How long have you been on this chemo cocktail? What are you SE's? Again I am sending positive thoughts your way that it is working. You are the first person I have come across that had a similiar reaction to their chemo.
Lovelyface- I had a similiar experience with my last onc. She wouldn't believe me when I told her my tumor was growing and kept telling me to wait for my next 3 week appt. My good friend/doc insisted she see me sooner and ordered an utrosound which showed the tumor size increase which is why they did emergency surgery. I haven't talked to her since and after multiple opinions went with an onc. I just love. She spends lots of time with me and I feel she really cares and pays attention to all of my questions.
Kittykat- I am so sorry that you got the news of a 2nd cancer. We are all praying for a cure.
Riley- I'm so sorry for your loss. I'm glad for you that he went peacefully and quick. My father died of prostrate cancer, by the time he got his DX he had bone mets. He too lived almost 3 years after his 6month prognosis.
Well the icestorm is here. It looks so beautiful outside with all of the trees covered. We are supposed to get even more ice today and tonight. The infusion center called early this morning to if I wanted to postpone my appt. with my onc and chemo. I guess they got several cancellations today. I'm waiting for her to call back to reschedule. I'm so anxious to meet with her. I have some pain in areas I hope she can confirm that they are nothing. I hope everyone has a great day today. I'll post later with the best thing that happened today.
Life is good unless we decide to make it great!
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luah and lovingmother: I live in europe and have had that chemo treatment. Its called FEC/DOC.
FEC is 3 different substances that you recieve first 3 times... every 3 weeks the DOC ist Taxotere that you also get every 3 weeks all in all you have 6 sittings. The taxotere is what knocked me out, the FEC was a breeze compared to that.. i didnt have any SE other than feeling a little under the weather on the following day. The taxotere hit me approx. 3 days after the treatment and then lasted approx 7 days thereafter. I had enormous pain in my legs, stomach aches, my mouth was completely sore inside so that i couldnt even swallow anyhing, lost my taste buds. And now 2 months after my last sitting i still have numb feet and hands, good thing is my tastebuds are back and my hair is growing back as well.
I wish all of you strength who are going thru the chemo part now... it gets better believe me.
I have 4 mire weeks of rads and then im hopefully done for good with these treatments.
ladies have a great day....
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That is what I experienced with Taxotere, exactly! I still have neuropathies and my cancer is back. I thought for sure the red devil would kill everything inside me, but I guess I'm a tough old broad....:o(
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Back in a funk today. I am ashamed to admit that I now clearly resent other people's good health. Does that make me a bad person?
I think winter is making me SAD. Never suffered from that before.
ANYONE WANT TO MEET UP IN DC THIS SPRING?
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YES!!
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cherry blossum time?
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LauraJane: glad to have you back!
Kelben: is it local this time? Well wishes.
Friends: thanks for the encouragement and take care of yourself. Smile knowing you did all you could do.
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Claire82- "Yes"... I am a bad person? Or "Yes" DC is a good idea?
Cherry Blossum time would be good.... have to see when that usually occurs.
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Heidi- I am noticing on all the threads I follow that we all seem to be in a funk lately. Maybe it is the winter blues. I think resenting ( or being jealous of) a healthy person is only natural. Everything we are going through is so unfair. It sucks knowing we have to think about this for the rest of our lives while other people don't. I can't even watch a sappy TV show without crying thinking about will I see my children grow up. We are entitled to be jealous, but I like to think we are so much more aware of how much we love and appreciate our family and friends. I too am sad and tired of all this sh*t- let's hope Spring brings us health and some happiness!
Tiffany
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Yes to DC
I think you are a great person, heidi.
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Kelban- So sad to hear its back. Man, so, so sorry.
Heiditoo- Sorry you are in a funk. I wish i could say or do something funny to make you smile. All the jokes I know are way too dirty and if I posted them they might close this thread. I think DC sounds like a blast. They have the beyond beautiful arboretum there. This Winter has been relentless here also. But everthing covered in ice today is beautiful the trees look magical. Hope you feel better soon.
Fighter-Glad to be back. Ditto to your post to Friends.
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Heidi, that's just north of Lewes, isn't it? I have a house on that beach!
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dawn--Yes. I sail off that beach a lot. My family has/had a beach house on Fire Island.
LJ- silly girl--- just *PM* them to me!
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I see dolphins all the time from my deck!
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Gosh... small world! Do you sail? Like horses?
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Winter always makes me down, and with bc, it's worse. I have noticed that sometimes I get irritated when others are so healthy, and yet they are so mean about trivial things. That's what gets to me most. They have no clue what it's like to fight a beast you can't buy off with money... and one where you can't work more in order to gain health. After dx with this, everything that can eventually be fixed either with money or changing jobs or minor surgery seems trivial to me.
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My horse is of the iron variety...I have a Harley. I do like to ride horses, but never got into it big. It would be lots of fun to ride on the beach though!
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