Calling all TNs
Comments
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Arlene: missed your news, somehow–sorry! *BIG HUGS* for you, too!
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Good news Meadow and Arlene. WooHoo!!!! So happy for you two!
NavyMom, glad you're doing so well! Thanks for checking in with us! HUGS!!
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Hello All,
Yea Meadow!
Happy belated Birthday Annie! Mine was the 20th. It was my 69th year celebration this year.
Mine was bittersweet this year, as I lost a dear friend who truly helped me out of the dark place that BC can leave you. Her funeral was on my birthday. But I did get to celebrate two days later. My daughter took me out to a fantastic lunch, at which I gained 3 pounds. I will be coming up on three years and NED this December.
I come on and read but don't post much. Still doing my yoga and trying to get out as much as possible. Sorry to say some days it's just too hot. Our weather is cooling down a bit now (thank heavens) in the 80's.
To all the newbies I'm sorry you're here but this is a great place even if you just come on and read. To all of our more permanent members thank heavens all reports are doing the NED dance.
Annie, make that appointment and get that mamo. Get it out of your head everything is going to be fine.
If I have forgotten anything important I plead senior citizen brain. 😜
Marsha
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Marsha, happy birthday! So sorry about the loss of your friend. Thanks for letting us know you're doing well.
I'm a yogi, too. I credit it with my relatively mild treatment SEs.
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Great to hear Meadow! Congrats! May NED no longer mean No Evidence of Disease. Let's change it to NEVER Evidence of Disease! I like that better!
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Thank you Al! I agree! Thank you all so much. Happy.
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Hello!
Big celebrations for Meadow and Cocker!
I don't know that this is the actual study but it shows survival rates by stage for triple negatives:
http://www.healthline.com/health/triple-negative-b...
Questions for you anyone with lymph nodes involved: if your nodes were removed and you had a masectomy, did you still get radiation? It doesn't seem like there'd be anything left, but I just want to make sure it doesn't get sprung on me at the end.
Cheers!
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Thank you for taking the time to post! I needed to see some long term TN survivors on here for encouragement. All of you have been incredibly supportive and helpful as I express my fears about having TN. I start chemo on Tuesday. Looking forward to blasting this bastard with some medicine. He will not win this fight!
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Just a quick answer as on my way out. Peabrain I had cancer in four nodes and it was spreading out of one of those so my surgeon took all of them out and yes I had radiation. They particularly did the breast and then the nodes to make sure. Hope they were right!!
Oh and thank you all for my birthday wishes. Made it to another one!!
Hi Linda long time no hear. How are your beautiful girls getting on.
Fighter good to hear from you. So glad you are doing well
NavyMom great to hear from you too.
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Hello everyone, I see I've missed birthdays, good news, and questions. No way can I catch up, but will jump in to recent posts.
Happy Birthday, belatedly, to Marsha and Cocker Annie. Birthdays are good.
Hugs of happiness Meadow.
As for the questions of treatment and years of health post treatment. I had 6 of 12 nodes that were found to have escaped breast. I had surgery first, then chemo, and finally radiation. All of that took 10 months, start to finish. I have been healthy, happy, active since. It's been nearly 5 years since diagnosis. I still feel vulnerable about the cancer returning, but all my lab work always comes back in the normal range. I'm 73 years old, grandma to 7 of the most wonderful grandkids, and have found my "new normal" is just as good as my "old normal." J
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Peabrain: I had 3 positive nodes, one was as big as 2.5 cm. Back in 2009 when I was dx, the standard of care was radiation with mastectomy only if you had at least FOUR positive nodes. So I did NOT have rads. I believe sometime in 2010 the standards were changed. This freaked me out for awhile.....I was worried that I missed the opportunity to throw everything at the beast. But all is well, I am doing fine and last year my Onc released me from her care. I see my Primary care MD every 6 months and the gyne once a year. And my plastic surgeon every other year. My breast surgeon has retired and I have not bothered to find someone else to feel me up!
But the bottom line is, get a second opinion if you are the least bit concerned about what is recommended to you regarding any of your treatments. A good doctor will want you to be confident with the choices you have to make. And if that means getting another opinion, so be it.
Question for all: Anyone having heart issues now? I will be having a repeat MUGA scan next month. My last echocardiogram showed a decrease in my heart muscle function. Dr. not sure if it was the Red Devil (adriamycin) or my High blood pressure causing the problem.
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Hi Navy Mom, Good to see you. Sorry you are having heart issues. The last time I saw a cardiologist was soon after end of treatment. He told me my heart was 15 years younger than my years. And I usually have low to normal BP, which I find amazing considering my family history. I see my MO tomorrow for routine check. I'll try to ask him about heart issues years after treatment. How are the grands? J
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Meadow...so happy to hear your good news. Such a relief.
Arlene...glad you received good news also.
Cocker..hoping you have many more years of good health!!!
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SA8PG: Glad to hear the eye twitching cleared up for you. I am doing well so far. I am having my 4th round this Friday (30th). I am halfway done, but I can tell the results are cumulative. I am taking a lot more naps now :-) I am going to the gym today after work. Trying to build myself up again before my treatment on Friday!
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YAY Meadow!! So very happy to hear the great news!!
Happy belated birthday, Cocker!!
Great news, Arlene!!
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JAN69, congratulations on your many years of good health, and thanks for posting!0
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Good news meadow and Arlene.
Happy birthday's as well!
Love and hugs from the UK!
x
Tom
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Hello,
Thanks for all the rads info. I asked my MO about it today and sure enough, he is recommending rads. Everyone was so sure that my nodes were clear before my surgery that I sort of slipped through the cracks after surgery. Doubling back now and will see the radiologist soon. I am very glad to have this forum and able to compare the treatment protocol of others.
On another note, here an interesting article about genetic mutations, which are often tied to TNBC. http://www.geneticliteracyproject.org/2014/04/08/b...
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Hi Everyone -
We got me moved over to Salt Lake City and checked into the Hope Lodge yesterday. When I met the RO a couple weeks ago he told me I would be getting 25 doses - so that's what we planned. Imagine my surprise today when we showed up for the simulation and tatoos - he told me he only wanted to give me 15 now - and no boosts! I had such a good response to chemo, and a clear path report - so there was even some discussion about whether I even needed rads - so it actually makes sense to me that I don't need the whole enchilada. My first one is this Thursday the 19th - which means I should actually be done and home before Thanksgiving. Yeah!!!! I have learned so much from all of you that I have my aquaphor, vitamin e, emu oil and mepilex dressings all ready. Oh yeah, a cooling towel too. Good to be prepared!
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Georgie...great news!!!
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So much good news here! Congratulations to all on good scans and all the other positives here.
I started FEC yesterday so am feeling a bit "hit by a truck" today but I saw my mid-chemo MRI and it really does look a lot better than when we started, my doctor is quite pleased.
Now just waiting to see what items from the SE list of horrors I get to contend with. I survived 11 taxol and 4 carbo so i think i can do this (we decided to skip the 12th taxol and get on with the FEC after a low blood count delay and a good looking MRI).
Hugs to all who need them. -Julie
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Is it common with TNBC to get radiation even with no node involvement, a tumor smaller than 5cm, a BMX, and PCR? My breast surgeon said she felt there would be no rads if I get a PCR which we think I will (based on we can't find my tumor anymore!) but my MO says it is a grey area and we would discuss with RO when I get closer to the end of treatment.
Ag23-Thinking of you during your first round chemo today! You got this!
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Peabrain, great article. Thank you.0
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Julie- if you scroll back you can see my posts about rads after a BMX, PCR, no nodes, and tumor under 5cm!! A few of us ladies on here had all if the above and no rads. I'm at Dana-Farber and got a second option at MGH. ALL the docs said the risks outweighed any benefit! It was hard for me at first... Now I'm feeling better about it. Rads is not easy so if you don't need it... Why put your body through that? All the docs said a Pcr is more benefitting then the rads... I try to remember that!
Hope this helps! I'm sure the other ladies will join in!
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LillieRose, I really appreciate that, and am so glad people have options. I, unfortunately don't, because I have inflammatory breast cancer, which is also triple negative so rads is absolutely necessary for me. I will read your posts though, it's good to know what to "look forward to" good bad and ugly
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Thank you LillieRose for the insight, I will scroll back! I really do not want to do rads if I don't have to! Here's hoping these last 7 rounds of Taxol kill the beast and I can move on to reconstruction quickly after surgery!
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48 years married to my old feller today. Every single year we have been married he has brought me a bouquet of red roses. This years ones came from Columbia in the USA. They are absolutely beautiful. He never ever forgets. I married a wonderful man.
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Happy Anniversary Cocker! Glad you got your roses! Well deserved! I got off the hook on flowers with my wife. She told me early on that she's not a big fan of flowers because they remind her of funerals! So flowers have never been something I've bought her. Perfume (Chanel #5 is her favorite) and jewelry (she likes silver more than gold so I get off a little cheaper there too!) are the old stand by's in the event I can't think of anything else for the particular occasion. But if my wife said she wanted the moon I guess I'd start building a ladder. Love that woman!
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Happy Anniversary Cocker and hubby!! Wishing you another 48!!
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Cocker...Happy Anniversary and may you both be blessed with 48 more years of love.
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