Calling all TNs
Comments
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Suze35: You are never a "downer", the way you described your children made me think of mine. I think it is always a good idea to start the bucket list; I've been thinkiing about that myself. What color convertible? I'm thinking red!
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thanks for all the responses to my post, I have another question, dx 5/2011, TNBC IDC, tumor 2.7 cm with at least one node, it was suggested that I also join a clinical trail with Carboplatin and or bevacizumab added to the standard chemo, taxol for 12 wks and 4 wks or AC. I have researched bevacizumab and found they want to remove it from being used for breast cancer and I am not comfortable with this. Has anyone experienced this trial? Thank you so much
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Suze- I think the way you are handeling all this is remarkable. Your children are lucky to have such a great mom! BIG HUGS to you...........
Titan- Can I just tell you that I love reading your posts. I always wait to read you before I go to bed. You have a way to tell it like it is but I feel your compassion and honesty and sense of humor too. Thanks for starting this thread. And I too hope your uncle will be ok and that his treatments can continue.
And yes home is here!!! It's my little haven! I always come here to see how you are all doing. I just LOVE Heidi' s sense of humor too! Even if sometimes bad things happen to some of us, you can be sure that someone is there to lift you up and help you continue the battle. And that's what it's all about. I think all of you here are wonderfull. Thank you all for beeing here even if sometimes things get rough. Love.
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Hi Umater: My tx plan was TC Taxotere and Cytoxin. I do know that bevacizumab was used in more advanced cases of BC, but I haven't heard whether it's making way or not. Try this Jennifer's blog she used it and she swears by it Jennifer Griffin. I followed her for awhile not so much now. My advise RESEARCH. RESEARCH. RESEARCH.
Titan hang in there w/ your uncle. Sending well wishes. You are right something has to be done about CANCER.
None of us know why we are here dealing w/ this, but fighting over it is so counter productive. Do what's best for you and your situation. As for me I go straight to my ONC and I ask away. I come here to see what other approaches I can incorporate. I avoid DRAMA since it's bad for my situation.
((((HUGS))))
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Yes, we need to research and bottom line we need to trust our oncology team to make the right choices or we need to find a different team. They studied this and research it and we will never know as much about it as they do. Yes, we live with it, and it is our lives at stake but they dedicated their careers to it voluntarily. We are reluctant participants to put it mildly and not really at our best or most objective.
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Lynn - I'm partial to red myself, but I'm not picky
. I've got my eye on a gorgeous little 1973 MG Midget, white, but it's in Michigan...may have to take a road trip!Titan - I agree with Isabelle, you have such a nice way about you. I enjoy your posts very much.
Babs - thank you
. I know you can relate well to what I'm going through.umater - my treatment was 4 DD AC followed by 12 Taxol with Carboplatin. The platins have been showing some success with TN, and I can tell you that it wasn't too hard on me. My WBCs hit the crapper at the end, and I needed Neupogen shots the last 5 weeks, but SEs were pretty manageable. That said, Carbo/Taxol worked very well at first, but my cancer became resistant to it.
As for Avastin, I will be using it with my next round of chemo in a few weeks. There are side effects that can be serious, but it is generally well tolerated. It has been yanked for BC use, but there is a hearing on it the end of June to revisit that decision. The doctor I met with at Dana Farber explained that the initial trials were flawed - they looked at the use of Avastin as a first-line chemo in metastatic BC, and if it extended lives. But women with Stage IV go through MANY lines of chemo, and it is difficult to judge the effectiveness of Avastin so far down the line. She also told me that information will be coming out soon that Avastin has a definite survival benefit for TN women, as our tumors are aggressive at building their own blood supply, which is what the drug targets.
In the end, you have to research your choices and trust your doctors to guide you. I don't regret using Carbo, even though it didn't work for me. I am hoping the Avastin with Xeloda does the trick.
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After my ac Iwill be on taxol/carbo. Does it usually have a good success rate Suze? I don't know much about it. Did you have taxol/carbo weekly? I am having the taxol weekly, not sure about the carbo.
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Hi everyone! Sorry, I have been crazy busy and not on here much. Just some words for all of you newbies: You will find amazing support, love and laughter here. Stay away from the negative postings and trolls, as they do not lift or help your spirit in any way.
Suze: I married late in life and never had children but I can just picture yours and they sound absolutely precious, beautiful and amazing-just like their mom! Hugs!
Titan: I am so sorry to hear about your uncle's reaction to his first chemo and I hope that he does better with the second one. Hugs!!!
Heidi: Keep the humor coming as it always brightens our days!!!
Germany does alot of experimental procedures (like mistletoe which has anticancerous effects) and some questionable, unproven treatments, too. They also test to see if a cancer procedure is going to work before giving it to a patient which I wish they did here.
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bkj66 - the use of Carbo is still kind of new, but a very small study came out last year (I believe) that showed a really good response rate, I believe over 70% of the participants had a pCR.
Here it is: http://www.asco.org/ASCOv2/Meetings/Abstracts?vmview=abst_detail_view&confID=100&abstractID=60453
The first 6 weeks I was on it, I literally felt my tumor shrinking away. But I am pretty sure my cancer is basal, which is more resistant to chemos. I did both Taxol and Carbo weekly, my MO said it would be easier overall. She didn't seem to think it made a difference if I had it weekly or every 3 weeks (the Carbo). I think it is definitely promising!
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Some of you may be interested in this shirt. I would have bought it for sure!
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Suze35- I feel just the same! I have always felt I was put in this earth to be a Mother. I just want to do just that. I get so angry and scared sometimes! However, I have to remind myself often to not let cancer take away what I have NOW. I don't want to be that depressing Mom that never interacts with her kids. I will just do my best for each day!
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tiffanyF4, I can totally sympathize with you about not being that depressing mom.... I am now that mother that is so confused from all the chemo infusions
. My daughter is always laughing at me. I sometimes go to tell her what to do and it comes out in a yell.... I hate that I do that and it hurts her feeling but i happens... I am a very different person from when I started chemo. Heidi Here is another great shirt and I am wearing it today. From chemochicks.com
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Heidi and Tracie - I love both shirts!
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Suze35: I am glad to hear that news about Avastin. I also have heard it may specifically benefit triple negatives. We need more treatments like that. That's why I was glad to see that trial over at the TNBC foundation site.
I love those shirts and I like the avatars on here. Tiffany, are those your children, they are beautiful. And I like Heidi's and tracie's avatars, and SunnyCoconut, yours makes me want to go to Florida for a Pina Colada.
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I love you gals! You always know how to make me smile!
Thanks for the info suze. your kids sound amazing.
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Hey Gang,
I have been reading for a few days here off and on and decided to post tonight. I am newly diagnosed and I am scared to death. A little about me, I am agoraphobic and I have a MAJOR medicine phobia. I have had my surgery and will be starting treatment next week..............however, I am not sure I can handle it or if it is worth it with all I have been reading. I don't want to die but my goodness sounds like the treatment will get me there. I have read so many stories about people dying and or having really bad reactions on their first treatment. Well, now that just makes me want to hurry on down to get started
. Wondering if alternative methods would work. I am terrified and just don't know what to do. Was just going to go with that the oncologist said and then I get on here and read that the Taxol would be better to get first but he wants me started on the A/Cytoxan regimine. When does it ever stop being confusing........nothing ever seems like the right answer.
Also my oncologist requires we get the Neulasta and the side-effects are horrible. How many of you are on this and how many are required to get it.
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It's been a while, but I just wanted to pop in to say hello.
My treatments are going as expected. The Gemzar/Carbo is wearing me down and running my blood counts to the ground. I am hoping that when I have my scans in June we see results, no progression would be nice.
Jenn
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stupidboob, you can do this. Everyone is different, but ac is very doable. I did ask my mo about the taxol first (I have had 2 ac already) and he said it is still in trial phase? Although it seems it is standard now for other big cancer centers. The first treatment is scary, but the nurse will be right by you and ready in case of a bad reaction, plus they give you pre meds to prevent a bad reaction. As far as the neulasta, I have had very minor side effects from it. First treatment I had 1 neulasta and my counts still tanked so they gave me 3 neupogen shots 3 days in a row. By the last shot I had pain in my lower back and couldn't sleep very well one night, but then it got better. The second time my counts did not tank, probably because of all the shots from last time and I have had no side affects from the neulasta shot this time so far (knock on wood). It's not fun, sometimes not easy, but it is doable, you can do this, it is worth it to do it.
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StupidBoob, you can do this. You can. I had AC first and yes with Nuelasta shots. Once I stopped trying to be conservative with the Ativan it wasn't so bad. I just slept a lot. Don't try to have AC on an empty stomach. I tried to eat very lightly on the theory that if I started vomiting there wouldn't be much. I found it was kind of like morning sickness and I was better off not letting my stomach be empty. You will get cold during the treatment from the fluid going in. They give you blankets but you might want to bring cozy socks and a hoodie so you can have your arms free. The Taxol wasn't bad. I had a little peripheal nueropathy and when I told them before treatment they decided to send me home without the treatment and reduced the dose a bit for the next time. Just communicate with your team. Mine was very responsive to any and all side effects. They watch you like hawks for any allergic reaction and they have the meds they need to counteract a reaction right next to you. I said it before and I will say it again. Trust your team or find a new one. THEY are the experts. Don't give in to this lousy disease by not having treatment. Tell them you are agoraphobic and have a medicine phobia. You probably won't be the first. If we felt sure of alternative treatments that's what we ALL would be doing and it wouldn't be the alternate anymore. Cut it out, poison it, burn it. Yes, it is barbaric and freaky and scary, but you know what? I know I have done what needed to be done . And I am convinced I am cancer free.
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Jenn3-hoping for good scans for you! Sorry your treatment is running you down, hopefully that means it is doing its job and you will get good news. Are you getting platelets or transfusions to help you out?
Here's to no progression, and to regression for your June scans!
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Stupidboob- I understand you are scared but most of us got through chemo just fine. I'm not telling you it's fun but it's very doable. I started with DD AC and went on to 12 weekly Taxol. My main scare before I started chemo was that I would not feel well enough to take care of my almost 5 years old little boy while doing chemo. But you know what, even if there were days when I had aches and pain from chemo or neupogen shots, I was well enough to take care of my little boy every step of the way. My best advice is try to take it 1 day at a time. Then one treatment at a time. Accept help from family and friends during treatments. You may be suprised how, with everybody's help and support, chemo will go just fine. Best of luck. ((Hugs))0
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Stupidboob: I did 4 X AC followed by 12 Taxol. It was completely doable! Everyone is different, but for me, I carried on most of my regular activities. I felt a bit fluish for a day or two, and would be a couch potato for a bit, but nothing terrible. I contined to work (I am self-employed). I walked and lifted weights throughout. I continued to ski every weekend. Neulasta was okay. Of course there were some side effects, but they were moderate and easy to manage. Just so you know, there really is a range of responses. Many women come on here seeking help because they are having a problem, you may not see posts from women who are doing okay, kwim? I wish you all the best!0
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Luah has a good point. Many of the "survivors" have just moved on and are not posting here. This may sound cynical but I kind of figure that the insurance companies wouldn't PAY out for these treatments if they weren't beneficial for the most part.
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Stupidboob...sorry but I just have to laugh at your screen name..I hope you aren't offended...but seriously..your name just kinda describes the whole bag of crap..doesn't it?
And hey everyone but I'm gonna go off on a tangent here a little..I think the "Stupidboob" name started me thinking (maybe a bad thing)...but anyway..seriously, how do you ladies that had the lumpectomies really feel about your boobs? I never really thought much about mine..they were just there and a part of me.....however, when I found the lump I never really saw a reason to chop the whole thing off..I don't see it as an enemy..or trying to kill me...it is what it is..the cancer could have shown up elsewhere..I don't feel like my breasts were sending out signals to attract cancer..it just happened...I did the lumpectomy because I didn't want to go through all the surgery, recon ect...I really respect the women that DID do that...they are much braver and stronger than I am.
Welcome to the club Umater...
And the Mom thing..Suze your kids sound adorable! They can really get you through the day can't they..your little girl..well she just seems to love her Mommy alot...I love it...
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thanks ladies..............means alot that you took time to write. I will try to respond tomorrow, but I think for tonight I am going to have to go to bed, as I have had a VERY emotional evening. Thanks again
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Good Night Stupidboob...try to sleep well ok??? I know it is hard with everything going through your mind..
Heidi..I meant to tell you that I went to a banquet last night and there was this Jungle guy there..His Mom rescued "wild" animals like you do.(I thought about you the whole time)..we saw a chinchilla, box turtles, an albino skunk, an alligator and alot of snakes..I did OK until he brought out the snakes..My mom and I were cowering in the corner...I told her I remembered her with the hatchet..and she said.."Oh no..it wasn't a hatchet..it was a tool I used to pound them" My mom is like 5 ft 2 now and a little thing..it cracks me up. I know that what she did probably wasn't a good thing...but it was right to her at the time.
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My Mom's weapon of choice against snakes was a hoe. She was terrified of them, but was more afraid of us getting bitten by one. I think she came close to passing out the day we found and carried home a green snake.
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Hello,
I was dx with TN in 12/10. I had estrogen positive IDC seven years ago. Finished 5 rounds of T/C - had to stop at 5 due to neuropathy. I go back to the onco in 30 days. My ca 27-29 was normal at dx, but it has been out of range since starting treatment, which is causing my onco concern. I just turned 50, May 2. I am married, and have 2 boys 11 & 16.0 -
OBXK: Hi there. So sorry you are having a second round of BC--that just sucks. We share the same birthday though I am a little bit older. I had 6 rounds of TC and had to stop the last Taxotere because I had a n alergic reaction. My ca was normal, too, at dx. Glad you found us here.
Stupidboob: There is nothing I can add accept that I took my Neulasta shots in the belly and they never gave me any side effects. I took Mag07 for constipation and it made all of my chemos much easier to deal with. Most of us do fine--but chemo is the only weapon for TN--surgery and alternatives are not enough--I was doing all sorts of alternative things and got no response!!! Chemo was the only thing that worked and surgery took out the remains. You can do this!
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Stupidboob, first I have to say that may be the best screen name I've ever heard. It made me laugh. Thank you, don't do enough of that lately. I'm afraid I can't offer you any advice on SE's as I haven't started my treatment either but I just wanted to reinforce what others are saying. We are TN's and Chemo seems to be our best bet. We were diagnosed around the same time. Onco wants to start me in 2 weeks, I just want to start and get this over with. My onc wants to do TAC x 6 for me and from what I've heard it gonna be rough but I don't see any other choice. I've been told the waiting is the hardest part. Please try to go thru the treatment before trying alternatives, not sure who said it above but if they worked they would be the norm and not an alternative. Everyone says 6 months is not a very long time when compared to the rest of your life and I'll agree on that.
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