Where are the tri-negs!
Comments
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Dear Lisa,
I think your reaction is fairly typical of all of us triple negs. When we read studies comparing our survival rates to those of women who have hormone receptor positive lesions, we despair. However, my oncologist pointed out to me that most of the studies that are freely available (without a subscription to a medical journal) on the Internet are already out of date. With new chemotherapy meds being used, the odds are evening out between triple negs and the rest of the gang.
One thing we have going for us is that our tumors might be aggressive, but they're often more susceptible to chemotherapy than hormone positive cancers. They grow fast, but tend to shrink rapidly too. If we manage to pass the three year mark, we're less likely to experience a recurrence than those with other types of BC.
The most important thing for us triple negs seems to be getting the right chemo cocktail. The Taxol drugs seem to be very good for us, as is the A/C combination. There's ongoing research involving the addition of Avastin to thwart the vascularisation that's characteristic of basal-type tumors.
Ask your doctor if he can get you into the B-40 trial which is currently recruiting. My BS and oncologist urged me to take part, and I am doing so. I've been randomized into one of the groups getting the Avastin ($6000 a dose -- many HMOs won't cover it!), so have high hopes.
http://breast-cancer-research.com/content/9/S1/S13
Take heart, dear friend. Whether or not you go the conventional or the trial route, there are effective treatments for triple negs out there. We just have to hit this crap hard and fast, as soon as possible. Hang in there and come back for information and hugs.
Love,
Annie
PS: Being in decent physical shape raises the odds of a person's dealing well with any illness. Keep up the good work!
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Hi Lisa,
I would ask your doctor about the platins as part of your chemo therapy cocktail. Carboplatin has been has been highlighted lately as being very successful for triple negatives. I am 3 1/2 years out from treatment and I figure 4 1/2 from diagnosis. There are lots of success stories on this site. Keep posting.
Warmly,
Sadie
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Lisa- being a tri-neg is a lot to absorb, isn't it? This is a great place to come for support and answers. Glad you found us. (I'm not one of the experts, BTW, I'm just a little ahead of you... started chemo in Jan.)
Annie- loved your post to Lisa. Thanks for the encouragement!
Paula
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Hi all. It's beena while since I've written, but read daily. When I was first dx I wasn't triple neg. The third recurrence I am triple neg. I was on Taxol, Avastin and Zomeda for four months. My markers dropped like crazy. Then it stopped and numbers went up. I'm now on Xeloda, Avastin and Zometa. I have mets to the chest wall, liver and spine. My onc. does ct scans every 3months and markers once a month. I have a ct scan on Thursday. I am very nervous about this. I hope things have shrunk, but for some reason I have a weird feeling about this. Thank you for letting me vent. I will try to write more. Maekelly
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Maekelly ((HUGS))
I'm thinking of you, while I also play the waiting game. May this last round be the knock out round for you.
Flalady
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Hi everyone, have not posted for a while
triple neg - dx may 06 - 1.4cm IDC and 5cm DCIS
2/14+ nodes - took 3 ops to get clear margins on DCIS
last one being skin and nipple sparing bilat mast
6 x FEC chemo
NED heading up to my 2 years
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Maekelly- best wishes for a clear CT scan!
yowyow- Congrats on being NED at 2 years--great news!
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Hi all,
Have not posted for a long time but do read the posts once in a while. My 68-yr old mom finished her AC treatments end of Jan. She's been recovering slowly since. These days she seems back to her pre-diagnosis days, in fact happier than before. She likes to sit in front of the mirror every nite counting her millimeter-short hair and waiting impatiently for the day where she can go out without her wig
. She is due for a check up in May so hope things will go well. A really grateful thanks to all who have offered advice and encouragment during our very difficult period. For those here who are still undergoing treatment, may hope and strength be your sustainance as it had been for us. Press on gals!
Sofie
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Hi All,
Lisa, of course having a healthy body helps us in many ways and protects us from other cancers. I beleive it eating lots of veggies (I go w/o meat 3 times a week), eat lots of fiber and will get back to working out when my strength comes back. Way to go on 40 lbs. I have been trying to loose 10 lbs forever. Now with the weight gain, it is 20.
I have read that Taxotere was more effective than Taxol. Not sure how old that article was. But I chose to stick with Taxotere rather than go to Taxol even when the SE got so bad.
Chemo is the only tx and rads if you have more than 5 nodes invloved. I only had one involved.
Live your life. Heck, we really risk our lives every time we get on the road. I refuse to live in fear though I will listen to my body more closely and not procratinate on going to the Dr.
Enjoy the days ladies, it is raining her in Middle Tn.
Debbie
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Hi all,
Wise words from Debbie. I can't always do it myself, but she's so right about living one's life and enjoying every day as the special gift it is. In addition to using the treadmill for 30-40 mins every day, I also eat nothing but fish, vegetables, and fruit. No meat, ever! I also take massive doses of calcium and vitamin D every day -- personally I think that has saved me from the bone mets so often associated with triple negs at my stage of the game.
However, I came here to post news: my hair has fallen out in patches so I look like Chicken Little, but ------------- THE TUMOR IS SMALLER THIS MORNING! Truly, honestly, really. It's still there, but there's a noticeable difference in size.
Today all of a sudden looks glorious.
Love to all,
Annie
PS: And I'm on Taxotere too; my oncie says it's more effective than the other Taxols for triple negs.
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Annie
I'm doing a little "Happy Dance" for you. Pray the next scan... it's gone.
Living in Hope,
Flalady
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Dear Florida Ladym,
I always keep my eyes peeled for posts from you. What a kind and caring person you are! It's people like you who make this board as special as it is. Thanks for always being here for everyone.
Love,
Annie
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Whoo Hoo on the incredible shrinking tumor. Let's pray and hope it continues to shrink. Good news is such a joy to share.
Debbie
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Hi - 2 yr. triple neg survivor, diagnosed 1/31/06, 5cm, IDC, Stage IIB
I had 8 rounds of chemo (A/C and Taxotere), lumpectomy (2 surgeries to get clear margins) and 36 rounds of radiation and finished everything in January '07. My first 3 mo. check-up there were some suspicious calcifications so had a sterotactic biopsy. Everything was ok and also ok at the next 3 mo. check-up. Have my next check up in April - feeling a little anxious but I'm guessing that is only normal.
I finally quit wearing my wig about 6 weeks ago (I know - nuts to wear it almost 2 years but I felt I looked better!) - hair is very thin and came back kinky in the front where the bangs are. I am getting used to it but am not happy with it!! (I used to have thick, straight, shoulder length hair.) I'm still tired - during treatment got into the habit of going to bed at 9 (had to get up by 6 for work) and am still doing that! I often fall asleep before 9 which is really irking me since I like American Idol and keep missing it!!
When undergoing treatment, was on this website several times a day and now check in a couple times a week to see how things are going with triple negs.
Take good care everyone.
Jackie
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Hi All,
I am sitting in the cancer center chemo suite having my last tx. Was dx. Sept 07, had bilateral mast in October but didn't start chemo til January (4 rounds CT 3 wks apart).
I'm apprehensive about the the next 3 months til I see my oncologist again. Does that seem like a long time? Tomorrow I meet with the plastic surgeon to schedule my exchange surgery so that should keep my mind preoccupied.
Anyone see Good Morning America this morning? Robin Roberts admitted she is a Triple Neg.
Thanks for being here - I'm glad we have this topic.
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Afternoon ladies ... while I don't have any wonderous insights to add, just wanted to wade in on being triple negative.
Had bilateral mastectomy in Sept 07 and have just finished my last round of chemo - FECD x 6 treatments. I have 30 rounds of radiation to follow beginning March 31. While the radiation was pro/con, my radiologist and I talked and we concluded that we'd throw the kitchen sink at my situation ... I'm all for that. I have a pension that I want to be around long enough to collect !!
I'm glad to hear that at some point the energy comes back. Right now, I feel like my mind says "yes, let's go for a walk" and my body says "go ahead without me". Unfortunately, if the body won't play - there's no game - ha !!
I'm still bald but am starting to get what I have termed "dryer lint" on my head ... it's soft, but not really hair. Funny enough - I miss my nose hairs most !! Me and the Kleenex company have been best buddies all throughout chemo. I will never under-estimate the hard work that those nose hairs perform. My fingers still hurt some, but is starting to lessen.
Haven't had the joy of the follow-up visits yet, but I'll be right there will ya after the end of my radiation. It does feel like a bit of a black hole for us triple negative people ... you're done treatment now, good luck and good bye ...
We'll keep our heads up ladies and together, in 50 years, we'll have a party !!! -
Hi Ladies,
I am getting concerned. I just finished 4 rounds of Taxotere. It appears my hair is coming back like Laura-Vic said "dryer lint. It is growing on the sides but not on the top. There is a bald strip right down the middle of my head! 21 years ago I had chemo and my hair came back thick and even all over. Does this mean I am going to be one of the few who has thinning hair from Taxotere? If so, I may be like Lily and wear a wig for 2 years.
My old hair was thick in the individual strands. Now it is like white fuzz. Anybody get this and then get their normal hair back. The curly does not bother me. 21 years ago, the curls were lost as it grew and I cut it. I have always had very wavy hair.
I missed Robin Roberts talking about her DX. What I heard was "Triple Negative, a deadly form of breast cancer" and I walked out. I did not want to hear anymore.
Debbie
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Debbie - I heard that comment from Robin Roberts too and I switched the channel !! The last thing I need to have repeated to me is that I have a cancer that accounts for only 15 percent of the norm ... and ... that it's deadly, and ... that there is very little known, and ... that the treatments are limited, and ... well, you all know the horror stories that we all can create.
Funny, I never really paid attention to those things until it was me ... -
Did you know that African women are something like...60% higher chance of being TN? They don't know why yet.
Flalady
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Hi all,
I'm new to this chat line so have some catching up to do.
I am five yrs. out from br. cancer. I developed br. cancer 2 yrs.
after the genetic testing showed I was negative for the gene, even
though we have a close cluster the family, maternal grandmother, aunt & my mother who passed away from it at 52. Anyway, I am also TN and have
found it frustrating to find much about it. Treatment ends and you feel like
you're left hanging. The attitude from my GP was that I'm now cured. The news only mentions research advances regarding estrogen +ve tumors. What's happening with regards to treatment advances or long term survival for those with TNs.
Also reading through previous conversations I noticed a few of you mentioned having neuropathy. I developed this in my legs & feet a yr. ago.
No one mentioned any connection to cancer treatment. I've been told it's likely fibromyalgia. Can you tell me more about what you've learned about this?
Thanks
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Hey Sofie- glad your mother is doing well.
Annie- I'm so happy that your tumor is shrinking. That's just what the doctor ordered, eh?!
Jackie- I'm glad your hair is returning--I'd personally hate having to wear my wig that long since it is soooo uncomfortable. You must have a nice one. I hope your hair gets back to "normal" for you soon.
CarolC- I haven't finished chemo yet, but I'm thinking 3 months is prob. about right for follow-ups w/ onco. Just remember, you're in charge--call him up and schedule an appt sooner if you need to!
Interesting about Robin Roberts being TN...
Hey Laura-Vic: congrats on finishing chemo!
Debbie- well, obviously I'm no expert (haven't finished chemo yet), but I'd give your hair a little more time to recover. I only have 1 lonely little hair on my head at the moment! My dh had chemo and rads for brain cancer in 2006. He was 6 months or more getting hair back. We really thought it wasn't going to come back (esp. since he got rads to the head), but he looks great now.
cardspeirs- you didn't say what kind of chemo you had, but one of the se's of the taxanes (taxol, taxotere) is neuropathy.
It is raining here in WV after a nice warm day outside.
Hope you all have a good evening.
Paula
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I have found they don't know a lot about neuropathy. What I read is you get this from metal toxicity from chemo's. They have a few drugs, that did not help me when I was real bad. But now I use Lyrica for the restless legs side effect of neuropathy. I did do acupuncture and it did help some. Cardspeirs do you have trouble with your legs at night? Mine are painful during the day mostly if I stand a lot or sit to much. But the nights are bad. I just can't seem to win on the balance of activity. Mine is still in my hands and feet. I just tied my shoe the first time in 8 months. My... those little things I have missed the most. Still can't button my shirts or where sandels. I'm 8 months from last chemo.
Flalady
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I read a lot when I was first diagnosed, and then decided that the reading was bad for my health. When I hear about the recurrance rates, I start to get depressed feeling why bother - it's going to come back anyway.
The best thing about reading all that stuff is it pushed me into being more aggressive about my treatment - doing chemo even though it wasn't required because of the size of the tumor and cancer stage.
I'm very afraid of the next 3 years and how I will handle it if there is a recurrance. This time I feel like I'm in a fog. Next time?
susan
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hello cyber sisters - thank you all for sharing your thoughts and stories! I really try not to read too much about Trinegs mostly because I feel like there isn't much I can do about it...but hopefully that will change.
I am a little scared now actually.....but being informed is probably the best choice. I am definitely going for tests! (My onc doesn't test after treatment)
Susie
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There is nothing we can do to change trip neg....I get terribly worried if I think about it sisters xxx
I was dx 6 months ago...just got four more cmf to do then rads...had 4 ac and will bbe 8 cmf in total.
My gran was dx at 40 .... then at 46... 40 years ago and lived til she was 80... no one knew about tip neg and there was no chemo...just rads.... I hold on to the thinking we have as much chance as any ....if we hit hard first round....no hormones for my gran either xxx
There are many trip negs that dont get recurrance.
I have learnt so much coping mechanism....and reading up on the ladies that sadly dont make it....has made me live life in the moment and put as much into it ....not let negative thoughts creep in unless neccesary....
You all inspire me deeply.... and we will get through this journey and be here for each other always .... xxx
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Sueps,
You're a brave lady. Hang in there -- we'll all get through this together.
Love,
Annie
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Hi Ladies,
Here is an interesting article about TN. The longer we survive, the better chances we have.
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Annie I am in the same clinical trial as you. I was placed into group
1A which is the standard treatment I have finished my taxotere and will start on the A/C the 28th.
This past Wed. my tips of my fingers started feeling numb and my toes are hurting. The clinical trail nurse said it should reverse itself over a period of months. As long as it does not get any worse.
I ask to have a ultra sound done before I start the A/C . I want to compare the size from beginning to 1/2 through. I will have the ultrasound right before my chemo on Friday.
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oh....it has been so very long since I've posted. i lurk occasionally. I hope my post shows when I registered - 2003. DX at 37, no nodes, stage 1 - and God willing....no recurrance. Docs tell me I am back to the "normal" range - for chances of getting BC -
So, for the newbies who receive the Triple Neg dx and are worried....Best of luck - many of us are doing very well!
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It is good to see long term survivors ... everything I read about triple negative is ... well, negative. It's basically the black hole - good luck to you - hope you are alive in a few years. The freaky thing for me is recurrence ... what I've read is that if you have a recurrence - the time from recurrence to ... is about 8 months. Geez, I hope I haven't gone through all this crap of chemo and now radiation pending only to not be able to make it to collect my pension ...
So, for all you long termers .. thank you. I hope that I will be one of you ... in the interim, I guess I just keeping trying to make those annual milestones ...
Laura in Victoria
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