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sewhappy

triple negative breast cancer

Posted by @sewhappy in Breast Cancer, Jun 25, 2012

this is the 3rd time, now stage 4, spread to lung and bones
I would like to talk to another person with the same cancer.

Tags: Cancer, Breast Cancer, bone metastases, stage 4, lung metastases, Cancer Recurrence

cosette

Posted by @cosette, Jun 26, 2012

Hi Sewhappy,
What would you like to discuss about breast cancer? I'm triple negative,
stage 3 and want to get in a trial at the Mayo. I live in Ohio, so it's going to
be a bit of a trip. Sewing and rug hooking are my main hobbies.
Take care and write if you like.
Best,
Cosette

sewhappy

Posted by @sewhappy, Jun 27, 2012

Hello Cosette,
The chemo I started on is not working, cancer is growing and gone into the left lung, it is already in the right one, also spots on the liver. Stage 4.
This week they started another kind of chemo, hoping to stop it from growing.
The last 2 days I feel like I am not sick, 2 weeks before I was in a lot of pain. After a scan it explained the pain, because it started in the left lung.
I do not want to go some place else for treatment. In Feb this year I was in Houston for a month with my friend, her husband went for research at MD Anderson for leukemia. I rather be close to friends and family. When I feel good I enjoy verry much helping others with sewing. We have so much fun and I feel they all need me. This keeps me positive, instead staying in a motel alone somewhere nothing to do. I love my sewing and sharing what I can.
I do not understand stage 3 triple negative. Would you care to share.
One last question, I never heard that name Cosette, is that french? I am from Luxembourg.
Take care, all the best to you,
Jackie

cosette

Posted by @cosette, Jun 27, 2012

Hi Jackie,
I hope the knew chemo works better. Sometimes I think the docs need to
try different approaches (of which there are many it seems) and see what
works. I had some rough chemo rounds in the past two yrs. (was diagnosed
in 2010). In answer to your question... Triple Negative bc does not express the genes for estrogen receptor (ER), progesterone receptor (PR) or Her2/neu--
thus all three are negative (most bc is not like this but has positive receptors).
With TNBC, there is no Herceptin or drugs to help with recurrence and
tnbc is agressive and only 15% of bc patients are in this category (which is
composed of numerous subsets of the disease which the researchers are
just discovering). That's about it in a nut shell.
I totally understand the staying in a motel in a strange city thought---If Mayo has a trial for me, though, I'm going to grin and go. MD Anderson was anyother possibility although there is a trial in my home state that is crawling at a snail's pace and not accepting anyone anytime soon.
I, too, love sewing and recently took up rug hooking with wool strips to get
my mind off of all of "this" c. business.
Cosette is a French name. French is my second language, though I've
forgotten so much of it. Did go to Quebec a few weeks ago, and that was fun.
You are from Luxembourg, how long have you been here?
Take care, and by the way, check out Dr. Oz's web site for anti-cancer
foods---several lists on it (5 foods that "kill c. cells" ---bok choy (also broccoli,
cauliflower, B. sprouts), cooked tomatoes, strawberries, artichokes, and
flounder.
Best,
Cosette

sewhappy

Posted by @sewhappy, Jun 27, 2012

Hello Cosette,
I am so happy that you emailed me again. Even if you do not have the same cancer just listening to someone who has a hard time with cancer helps.
Some days I am so tired or in pain, then I rest.
Most of the time friends come over and I teach them about sewing. My friend from Tucson called this afternoon again with a problem, that I fix by email or over the phone.
There is so much I would like to share with me friends I have no time thinking of how long I have left.
Hospice was here today to prepare me.
I do not need hospice yet but they want to get to know me when I need them. In 02 I had left breast cancer her2, in 05 cancer in my right estrogen. Then this year in Jan I felt a bump on my breast bone, ignored it, I thought it was calcium buildup. Febr. I went to Houston to help my friend, if you go to MD Anderson stay at ST. Dominic, archdiocese of houston, I love it there. 3/4 mile from the hospital, around $ 50 per night.
I am 66, came to America in 65. Have 3 children, divorced and remarried (6 years) I took care of my husbands wife for 18 months until she passed. We stayed friend and married as friend, never a love affair but a peaceful marriage.
My friends are crying more than I am they say, what are they going to do with out me, I told them every one is replaceble.
I wish we known each other when you went to Canada, we could have visited together, we live in Michigan. One hour north of Grand Rapids.
Well dear Cosette, take care, all the best for you.
If there is any thing I can help you with a pattern or a pattern you are looking for let me know. For me it is so peaceful to sew.
Best, Jackie

noheminavarro

Posted by @noheminavarro, Jul 6, 2012

I just wanted to say hello to both of you. In April, I lost my dearest friend to an incredibly aggressive triple negative cancer that had begun as a tiny breast lump less than a year before. She was an amazing woman, and an endurance athlete in her mid-40s. The shock of it has still not left me. I find myself wishing she had had the time and ability to go for a clinical trial... anything. I understand what you are going through, because I was there with her. I wish you both the best. It feels like I've been dragged into a war that the whole of society is fighting, and it makes me feel better to know that some one somewhere is beating this horrible disease.

rmerwin

Posted by @rmerwin, Sep 28, 2012

Hello - I have just been diagnosed with grade 3 triple negative bc and will see my oncologist at Mayo Clinic Jacksonville, for the first time next week. I am told to expect 6 months of chemo followed by 4-6 weeks of radiation. I have passed the terrified point but am very aware of what thew statistics indicate for this type of cancer. I plan to beat it because someone has to.

cancerfree

Posted by @cancerfree, Oct 16, 2014

I was diagnosed with stage III, grade 3 triple negative breast cancer in March, 2014. I wen through chemotherapy of AC and 12 weeks of Taxol. I had a lumpectomy and 19 lymph nodes removed which were all positive for cancer. I am currently going through 33 rounds of radiation. Is there anyone who has triple negative breast cancer and can tell me what your protocol has been. The idea of a recurrence has me looking for a clinical trial already and would like to know your experience. Thanks.

terrianne

Posted by @terrianne, Thu, Apr 21 at 2:25pm CST

Hi.. I was just diagnosed Feb 16 with Breast cancer. I am 44 years old and found a lump in Dec.. My ultra sound showed nothing, my mammogram showed nothing. I then asked my Dr to schedule me for a MRI and breast surgeon app.. The MRI showed the mass at 7 cms. I then had biopsy on Feb 16 and my First visit to cancer clinic on March 16 th, the mass was 13 cms ...I started chemo 2 days later.
I have a Triple negative breast cancer and would like to know more about this type of breast cancer and enjoy talking to anyone who has had this type.
Cheers, Always Positive

colleenyoung

Posted by @colleenyoung, Fri, Apr 22 at 8:57am CST

Welcome to Connect, @terrianne.
I moved your message to this thread where you can hopefully connect with @cancerfree @rmerwin and the others sharing here. You might also appreciated reading and listening to the stories of other women treated at Mayo Clinic for triple negative breast cancer here: http://sharing.mayoclinic.org/s=triple+negative+breast+cancer

Terrianne, how much longer are you on chemo? How are you managing with the side effects?

kimlofdahl

Posted by @kimlofdahl, Sat, Apr 23 at 8:29am CST

I was diagnosed in 2013. Stage II. Clear margins. No lymph nodes. I did 16 chemo. 33 radiation. It's been two years since my last treatment. Doing great! So thankful for every day I'm given.

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cosette

Posted by @cosette, Sun, Apr 24 at 1:37pm CST

Grannyk,I would be very happy to talk to you about Triple Negative BC. Best wishes Madeleine Cosette

colleenyoung

Posted by @colleenyoung, Sun, Apr 24 at 6:17pm CST

Welcome back to Connect @cosette. You'll note that I removed your personal contact information from your message. The discussion forum on Connect is public and I want to spare you from getting unwanted spam. To contact another member privately, I recommend using the private message function. Simply click the member's @username and then the envelope icon. Happy and safe sharing 🙂

@kimlofdahl and @cosette thank you both for your messages. I'm sure @terrianne will appreciate hearing from women who have "been there". Cosette, did you ever get on a clinical trial? Are you still hooking rugs?

kimlofdahl

Posted by @kimlofdahl, Tue, Apr 26 at 5:18am CST

Thanks for your help:)

fundytide

Posted by @fundytide, Thu, May 5 at 12:37pm CST

November2014 I had a lumpectomy for triple neg ,grade 3 stage 2 Breast cancer....then chemo and radiation. It has been one year April /16 since last radiation. Had Taxotere chemo. Does anyone have ongoing GI ( bowel)issues and brain fog and fatigue a year after treatment ?

colleenyoung

Posted by @colleenyoung, Thu, May 5 at 12:47pm CST

Hi @fundytide, welcome to Connect.
I moved your message to this thread so that you can connect with other women who have triple negative breast cancer. @kimlofdahl @cosette @terrianne, what ongoing side effects or late-stage side effects have you experienced post treatment?

cosette

Posted by @cosette, Thu, May 5 at 1:06pm CST

 Late side effects I have experienced include lymphedema after 16 nodes were removed (only 1was positive).  It was initially something that I didn't have, but about 3 yrs. posttreatment it gradually developed. I continue to need on and off p.t., wear a sleeve/gauntlet,and now have a pump.  All of these things help. I also had a specialist test me for anew surgical technique to repair lymph flow.  I was not a candidate for that, at least notin the least invasive manner.  I do hope someday there is a "cure" for this condition.Good luck to all the Triple Negatives out there.  Keep fighting the good fight.Cosette

berit

Posted by @berit, Wed, Oct 12 at 3:25pm CST

I was dxed w/ triple neg breast ca, grade III in Nov. 2004. I had the lumpectomy the same month, followed by chemo, then RT. I was tired for at least a year and ended up shortening my work week from 40 hours to 30 hours permanently. I remember the brain fog. Chemo recovery takes a while. Keep in mind that chemo knocks out healthy cells as well as malignant ones. The healthy cells recover, but it takes time. Your fatigue is unpleasant (to but it no strong get than that) but normal.

Don't remember having GI problems, at least not any worse than I already had them. The good news: it's 2016 and I'm cancer free in that breast. The bad news: once you have had cancer in one breast you have a higher risk of developing cancer in the other breast which is what happened to me. In 2013 I was dxed with a stage I, estrogen+ breast cancer, grade II, in my other breast. I had a lumpectomy and RT for that and so far, so good, no recurrence.

I'm taking oral chemo which is much better that the two other kinds I took which made me feel like I had been run over by a truck. The side effects for all these drugs suck but bear in mind that your oncology team has rolled out the VERY heavy artillery to ensure your survival. With time, the side effects, while extremely difficult to tolerate now, will eventually disappear or at least lessen. Also bear in mind that if you feel lousy, imagine how the cancer cells are feeling!

Triple negative is survivable. Don't let anyone tell you differently. I'm 12 years out from my triple neg, grade III dx.

colleenyoung

Posted by @colleenyoung, Wed, Oct 12 at 3:45pm CST

Welcome to Connect, @berit. Thank you so much for sharing your story here. It's so helpful to hear from others who have been there!

fundytide

Posted by @fundytide, Thu, May 5 at 1:32pm CST

Hi Cossette....U seem to be coping well with lymph edema...I had 2 sentinel nodes checked after/ at surgery ,both negative ,so no lymph edema...so far..most of the women I met at the Cancer centre in Ottawa Canada ,were in their 30's and 40's with small children,but I am 73 am
And was told it was unusual at my age to get this particular type...what affected my quality of life totally were late side effects from the drug docetaxel ( Taxotere).... Symptoms like diarrhea with no warning,keeps me close to home and socially isolated...much worse than the disease...but I'm still here..and grateful for that.

kimlofdahl

Posted by @kimlofdahl, Mon, May 30 at 8:02am CST

I was having horrible stiffness in my legs etc. Swelling of knees and upper legs. I started taking Glutamimmune made by Ajinomoto( 2 scoops daily) and Turmeric Curcumin 500 mg. It has given me my life back. I also use Magnesium Oil. Hope this helps you. I also check my ph and keep it at 7.0. If your acid levels are out of wack it will affect your whole body.

neeci

Posted by @neeci, Tue, May 31 at 6:50am CST

How do we adjust our ph levels? I also heard that cancer cells don't like high ph...so??? Is this a myth????

Thanks, glad all is going well. Neeci

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cautiousoptimism

Posted by @cautiousoptimism, Wed, Jun 1 at 7:12am CST

I'd like more info about this, too. How are levels checked?

memes likes this
californiagirl

Posted by @californiagirl, Thu, Aug 25 at 5:58pm CST

I was diagnosed 4-22-16 with triple negative, 1 lymph node postive. Single Mastectomy 5-31 and I am now going thru round 5 of chemo on 8-31-16 and start 12 weeks in a row after 4 rounds of Doxirubicon.

colleenyoung

Posted by @colleenyoung, Thu, Aug 25 at 9:09pm CST

Welcome to Connect @californiagirl. Glad you found this group with @cosette @kimlofdahl @fundytide and others. We look forward to getting to know more about you. How are you doing on chemo? What side effects are you having to manage?

janicec8957

Posted by @janicec8957, Tue, Nov 8 at 12:26pm CST

Hello to all,

I am new to this site, and am trying to figure out the chronological order of posts. I see that there are posts from 2012, with responses from 2016. So, please bear with me while I get acquainted.

In October 2011, I was diagnosed with Stage 1cN0M0 grade 3 triple negative breast cancer of the left breast. My sentinel node biopsy was negative, and my treatment regimen consisted of a lumpectomy, followed by brachytherapy radiation, and then 4 rounds of Taxotere/Cytoxan. I remained disease free until this year. After receiving injections of Prolia, for osteoporosis, I began having pain in my hips and thighs (bone) in fall 2015. When I saw my Oncologist for my 6-month routine exam in June 2016, he ordered a PET/CT scan to rule out bone mets. The PET/CT scan was negative for bone mets, which we've decided was a side effect from the Prolia, but it did show 5 FDG highlighted lymph nodes - 1 small axillary node, 3 subpectoral nodes, and 1 subcarinal node (right hilar area). The largest subpectoral node biopsy confirmed grade 3 TNBC in July 2016. There was much discussion regarding the one subcarinal/hilar node ~ whether to attempt biopsy to confirm malignancy vs a false positive (inflammation) of the node per PET/CT scan, but it was determined that it would be too aggressive to get to the node to biopsy. But, because they are assuming this subcarinal/hilar node is malignant, they have staged me at 4, because it is on the opposite side of the other nodes, and the breast where my original breast cancer was. So, my official diagnosis is Stage IV Regionally Metastatic Recurrent Triple Negative Breast Cancer.

A clinical trial was discussed, but my Oncologist wanted me to be available for radiation immediately following chemotherapy, so we decided on 4 rounds of Adriamycin/Cytoxan, which began in August. I had my last (hopefully) of 4 rounds on November 2nd. On November 18th, I will have a PET/CT scan to see if the AC has worked, and implement a plan from there. I trust and like my Medical Oncologist, but have decided that I would like to get a 2nd opinion from a respected Breast Oncology program, and have scheduled an appointment at the Jacksonville Mayo Clinic in December. I feel like I have nothing to lose, and everything to gain at this point in time.

As a retired nurse (Pediatrics), I am great at researching and understanding much of the jargon, study outcomes, and journal articles that I have read. In the past 5 years, I feel like I've become a reluctant expert when it comes to TNBC. Stage 4 is extremely frightening, and since it is TNBC, even more so. It seems that much less research time and funding goes towards metastatic breast cancer, but when it's a recurrent metastatic breast cancer, even less. I'm looking forward to reading more stories on this web site. And, I hope to learn from each and every person.

Best wishes to all.

Janice

colleenyoung

Posted by @colleenyoung, Tue, Nov 8 at 3:47pm CST

Welcome Janice.
Indeed this discussion group of women with triple negative breast cancer was started in 2012 and reactivated in 2016. I'd like to introduce you to fellow triple negative members @kimlofdahl @cosette @terrianne @fundytide @berit and @californiagirl.

No doubt leap frogging from stage 1 to stage 4 TNBC is shocking and frightening. You might appreciate watching this video with Dr. Victor Pizzitola and the breast imaging team as they lead a tour of Mayo Clinic's breast cancer imaging center in Jacksonville, FL http://mayocl.in/2fQLfAS The staff there are so welcoming, knowledgeable and work with state of the art equipment.

Janice, does the current protocol of chemo followed by radiation lower your eligibility for clinical trials? Were you looking at a specific clinical trial?

berit

Posted by @berit, Wed, Nov 9 at 11:55pm CST

Wow! What a nightmare, Janice. Your story was sounding like mine until it jumped from triple negative, stage I to stage IV. You are doing EXACTLY what I would have recommended, getting a 2nd opinion. You can't do better then Mayo, and you can DEFINITELY do worse. I was dxed with stage I, triple negative, grade III in my L breast in 2004 and was cancer free (after lumpectomy, chemo and RT) until 2013 when I got a 2nd cancer (stage I, ER+, grade II) in my R breast. Don't you love how this damned disease won't let you alone?

I must say, a jump from stage I with no positive nodes to stage IV sounds like a BIG jump to me. I'm not a doc, but I was an oncology social worker for many years so you do get a sense of the usual way things go. I think you are very smart to get a 2nd opinion. It's you LIFE! You owe it to yourself to leave no stone unturned. No good doc will be offended by your getting a second opinion. if s/he does, you don't have a good doc - drop s/he IMMEDIATELY for someone better!

My thoughts are with you. And I'm sure everyone else's are too. Keep us updated, please.
Berit

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