Calling all TNs
Comments
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I'm new ~ found this board last night. I am Triple Negative and just finished a year or so of treatments, double mastectomy, radiation and now reconstruction this past month. I am somewhat anxious now since ALL that can be done for me is done. Well, except for the Doc visits and MRI's that will always be in my future. I am to tell her if I get a headache that lasts longer than a week and if I feel anything different in my body. I read that 3 year survival is good if you make it and even better after 5 years.
Thank you all for your input on this feed.
I believe that God holds my life in His hands, trusting Him.0 -
Gwenie56 - welcome! Good to hear you made it to the other side! I hope you adjust well to your new normal. Try not to let fear get the best of you. It robs you of your joy today. Continue to be well...
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Gwenie56 - Welcome to this board, I hope you will find it awesome! Many of us find this to be our ultimate solace place where we openly talk about everything, and nobody judges us. My ex-Onco. as well as the present one have said to me that I will be cured if there is no recurrence by 2015. I guess they believe in the 5 year mark. But I love to hear about the 3 year mark, although it depends on when you want to start counting from, the diagnosis or treatment?
I finished chemo on December 30, 2010, and I started radiation March 1 - March 31. So, there was a gap of 2 months in between Chemo and Rads for me.
I did taxol every two weeks (dose dense). I did have some neuropathy, but not so bad. It was very doable. I think for me Taxol was very easy compared to AC.
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Welcome gwenie. Glad you found us. This is a great forum with lots of love and support.
ALhusband. I started my rads about 4 weeks after Taxol. I think 3 to 4 weeks is average although my MO said 4-6 weeks.
Here is a link I posted to the Weekly Taxol forum yesterday. It was recently posted on this site. It is a study comparing weekly and dose dense Taxol.
http://www.breastcancer.org/research-news/20130612-3?utm_source=Personalization&utm_medium=accounts&utm_campaign=60,650 -
I will try to catch up asap been going through a rough patch.....
Can you all tell me what you docs feel about the Ki67? When first diagnosed I was 44% and now l am 84% this really disturbs me. Last chemo, yesterday I hope0 -
Stupidboob - I don't know about K167, but will try to google and read up. I am sending you healing thoughts and hope you feel better soon. Like my breast surgeon explained to me, she said lots of things are always going on in our bodies all the time. When test numbers such as tumor markers and K167 rise and fall, please don't always think that it is the devil, it could be other things going on. I hope you had your very last chemo and a bright future is ahead of you. Have a wonderful weekend!
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Thank you lovelyface that is a good way to look at it. I know it means how fast the cancer is growing and that tends to freak a person out and then when I research it I get poor prognosis.....who wants to read that :-(
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Gwenie - welcome to the group, it's a place of love and support.
Stupidboob - I'll take any info on Ki67 too. I imagine it was in my path report and I didn't notice it. I did notice one thing - my HER2 is "equivocal" this time and is having further testing. My appt with my onc was the same day as my case went before the tumor board. After she gave me my recommendations, I asked what my HER2 results had come back. She got that blank look, where you know they don't have a clue what you're talking about. She looked and they haven't come in. Told me that the info might change the Tumor Boards recommendations. *head-desk, *head-desk*. A room full of experts and not a one of you noticed that in the path report???? *sigh*. I really think I may go for a third opinion before chemo. I have two differing opinions now, I think I need a third for a tie breaker! Can't do chit though, because the path report still hasn't been updated.0 -
OK - read my report again, isn't even any mention of Ki67?
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Kathryn did you have the onco
test, I understand one or the other is done0 -
Jenjen- Big congrats to you!
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Kathyrnn thank you so much for the honest answer. I am not up on the levels of nodes this node is a smidge below the crease in the arm pit. The Dr. pressed in deep to feel it. He also showed me how to feel it. So I have to press in & rub downward to feel it. It's not huge....but you can feel it. I know if it was larger sticking out there would be a lot more worry. I remember a girl I knew in school that had Hodgkins Lymphoma & I got to see her lump before they removed it. It was large. But I know a few cells can still lurk & not cause this. I am a realist & know the chances are 1 to maybe 3-4% of this happening. So it is very low. He is an old very wise cautious Surgeon! He is very good, also has done research & has published papers on his research. I trust him & he knows that my breast cancer case surprised him because it just didn't seem like my cyst would really turn out to be a cancerous tumor. But he always lets the testing do the second guessing not himself! Again thank you for your candor. Julee
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DOGLOVER and RUTH - I had neoadjuvant dose dense AC 4 doses every 2 wks, then was supposed to get dd taxol every 2 wks for 4 cycles. My first dose of taxol gave me intense pain. I have a very high pain tolerance, and it literally kept me off my feet for 3 days. I had intense nerve shooting pains from my hips down, where tears were streaming down my face . A call to the mo on call (not my regular onc, of course this happened on a weekend) gave me no sastifaction - told me it was from the neulasta. I know the difference between bone pain and nerve pain, no doubt in my mind it was from the taxol. Besides, I had neulasta 4 x's already with no se's. My reg mo switched me to taxotere for the next 3 tx, every 3 wks. I did get some moderate neuropathy from the balls of my feet to the toes. residual now is in my toes still 7 mos out from chemo. The funny thing is, I was told the AC was the hard part, but I breezed through that. The combination did a great job, no residual tumor , 1/7 nodes positive post chemo, removed with bmx, then rads. Even with that response, I now have a local recurrance in skin and/or chest wall. It seems to me that there is no cookie cutter cure for tnbc. What works for one may not work for another, but I believe I did get a great response from the AC . On Xeloda now, meet with mo on 19th to see how its going.
JULZ - trust your instincts and your body. Don't panic, it could be a node enlarged due to infection, not necessarilly bc. But, yes it is possible that they don't show up on scans right away. My PET scan done after my recurrent tumor was excised showed no uptake 1 wk after. 1 wk after scan, 3 new lumps came up, yet nothing showed on scan the previous week. So definitely get it checked, just dont assume the worse.
STUPIDBOOB - My understanding of the KI67 is that it shows how active the cells are dividing. My original biopsy was 90%, meaning that of the cells they examined under the microscope, 90% were actively in the dividing stage. It measures the rate of growth, the higher the number, the more aggressive the cancer. My biopsy with recurrence was 84%. I don't know if my bs will excise my new tumors, but since i've started Xeloda, I'm sure those numbers would be lower now if biopsied.
Tomorrow, my girls and I will take my husband out for Fathers Day. I appreciate every day I have to share with them, and hope all of you have a wonderful day as well. I just really wish my father was still alive to share happy moments. He was my rock, and I miss him so much. I now know what he went through with his diagnosis of CHF, the fear and heartache of one day leaving his children. Dad, I love you.
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Julz - I'm glad you didn't let it scare you. I think yours is definitely lower, because none of the docs could palate mine. I like your doc!!!!
Stupidboob - I'm going to have to pull my original reports. There is no testing in my current pathology report except for ER-PR-HER2 testing.0 -
Is anyone taking Folic Acid as a supplement? If so, what are the benefits or the reason you are taking it?
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I am! I probably read somewhere on here that it is a good thing to take..have been taking it since the end of chemo...I know my onc approved of it then and now...reading on the bottle it says it promotes heart and nervous system health...and also female reproductive health....not sure exactly what that has to do with breast cancer...anyone else know?
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Hello everyone. I'm seeing so many new names on this thread and would like to welcome all of you.
Thanks for all of your good wishes regarding my son's return to the States. He is well and glad to be back with his family.
Nothing much else to report....I passed my 4 year survival date a few weeks back. Pretty uneventful. But I did by myself a bottle of Korbel to have with dinner that night. Had to clue in DH and he was happy to share in a drink with me. BUT next year will be different.......I am planning a party and will also be getting rid of my 10 year old car and buying a new one to celebrate the occasion. So there, Cancer. Take that.
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Folic Acid: My original MO told me to buy under the tongue folic acid at Trader Joes for neuropathy. I fortunately never had that problem so didn't take any.
Oh me, under the tongue is sub-lingual, I think.
Navy Mom - Congratulations on your milestone. I'm almost 2 and a half.
Best wishes, warm hugs, and optimisim. Jan
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Hi everyone - haven't been on here in awhile. It has been 3 1/2 years for my survival date!
Just wondering what everyone does for check ups? My onc. just sees me every 4 months and I have no other tests done - is this the normal.
thanks,
Kelli
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Kelli, I am still in treatment, but I had asked my MO what follow up I will have after chemo and radiation and she said, I will get regular mammograms, visits with her and my BS, and thats it no blood work, no pet scans. She said we will go by any symptoms if I get them and she said studies have shown that those who get pet scans and bloodwork have the same survival rate as those who just report symptoms and I read it in many onlline articles.
I think it may depend on how advanced the cancer was to begin with if they recommend tests or not. But I'm only guessing.
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Thank you NavyMom! I have been at BCO for 5 years now after they found suspicious calcifications in my 2end Mammo at age 41. That Biopsy was B9! What I learned here helped me to find early & get the "real deal" DX last year. My best friend that I met here is now 10 years out with TNB! To you, Kad, & the others (names escape me) Congrats to those milestones of years rolling by!
PS...My BC was found in the same breast as the first biopsy a few cm's away on the side of my Lefty!0 -
Folic Acid, Fish Oil, & CoQ10 I have been taking about 8-10 years now for my Heart. I have high blood pressure, cholesterol, & lots of family history of strokes & heart attacks on both sides....lately with my reading on BC & TNBC I am beginning to wonder if this is why my tumor was larger but mostly non-invasive?
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Slowloris & Kathyrnn the worry still lurks but each hurdle makes it passable. Also I know from many BCers here & in real life that often enough they double check stuff at scan time. I go every 6 months to my Breast Surgeon Onc. & my RADS Onc. I only had to see the Med Onc twice as I had no chemo. But he told me to call if I ever had any ?'s. I had ? back about 2 months ago & he was true to his word! He called me a few days later about 7 at night! I love a team that works together for the patient!
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Worrywart I think you are right. I only get mammos & an ultrasound if warranted. I go every 6 months. No blood tests except the BRCA testing at the beginning.
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At 4 years out, I see MO every 6 mo for exam, and blood work (blood count, tumor marker and metabolic panel-that shows kidney and liver function). No scans unless there is a problem/pain. I see BS every 6 mo and PS once a year. And also see my PCP every 6 mo to manage Metformin and blood pressure and cholesterol. Geez, can't forget the gyne, the derm, and the dentist. Oh crap forgot the eye doctor too! I gotta stop typing....
Have a good day everyone.
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Still here. Ben doing chemo almost nonstop since 2008. Had 2 recurrences -- supraclavicular node and T11. Still working full time, though being bald and tired is getting me down some.
Refuse to google survival rates!0 -
My wife's MO says (in an appropriate, kidding way, in front of me), "After chemo is complete, then you and I get married for a while. We'll see each other monthly for a year or two. Then every 3 months after that and then every 6 months after that. You'll call me, almost like a hypochondriac, any time you notice anything different going on in your body."
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Navymom: Congrats on that big milestone. So good to know you're doing well.
5th Sib: Thanks for linking to that taxol study; first time I have seen biweekly versus weekly results... kind of reaffirmed the choice I made for me.
ALHusband: Your wife's MO sounds like a gem.
Welcome to the newbies. Hope everyone has a good week.
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Can you swim when getting radiation?
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