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Triple Negative Breast Cancer

blessing43
Posts: 11
Joined: Jun 2008

Does anybody know of any one who had or has this type of breast cancer so that I can compare notes, as I was recently diagnosed of same. Hugs to you all and God bless.

May

cabbott
Posts: 1046
Joined: Aug 2006

A friend of mine who was diagnosed two years before me had this kind of cancer. She had chemo and told me that chemo worked best on this kind of cancer. She had a lumpectomy followed by radiation and chemo, but I do not know exactly what kind. I do remember that she missed only 2 days of work that year in spite of chemo and radiation throughout the year. I just hit my 5 year anniversary last fall and she is still going strong with no reoccurances at year 7+.

blessing43
Posts: 11
Joined: Jun 2008

Hi cabbott
Thanks ever so much for telling me about your friend. It is very encouraging to hear stories like yours and your frend's. Many of the articles on the internet on triple negative is quite discouraging but like your friend said, so also my doctor, chemo and radiation works on this type of breast cancer. Thanks once again for taking the time to encourage me on my battle. Congratulation to you for overcoming the beast and remain blessed in the Lord.

Anonymous

Well, if there is a bright side, you might find it in reading just how yechy the estrogen inhibiting drugs can be (see posts). And the percentage of prevention they change is not that big. I haven't heard from women who were progesteron positive and what drugs deal with that. As for being her2 positive, that used to be a very undesirable diagnosis. There is a good drug that works to combat it now, herceptin, but it still may be better not to have that marker as it is an aggressive one. I am her2 positive and will be returning to the chemo room for the rest of the year, once every three weeks to get my herceptin infusion. It is not a chemo, so my hair will grow, but it does go hand in hand with an IV.
Incidentally, being estrogen positive does not mean that all of one's C cells are. In my case, only 45 percent are estrogn pos. So anti estrogen drugs will not do anything about the other 65 percent.
Maybe you knew all this. It sure can be complicated. I hope you have a doctor who will help with some good explanations. And maybe steer you towards some good diet and exercise goals that will empower you to feel that you are taking steps toward prevention. Best wishes, love, Joyce

blessing43
Posts: 11
Joined: Jun 2008

Hi Joyce
Thanks for sharing with me about your journey with HER2 positive BC. I have had about herceptin and thank God it does not have the same side effects as many of the chemotherapy drugs. I am HER2 negative and from what my doctor said, there is no drugs at the moment to be prescribed after 6 cycles of chemo and radiation. I understand a lot of research is being conducted towards this goal and by the grace of God, they will find something triple negative survivals can take after the above mentioned treatments. On the other hand, I understand that triple negative BC though very aggresive, is responsive to chemo. I have only had one session of chemo and will be going back for my second (three weeks interval) on June 13. The first knocked me down so badly that it took me a week to function somehow. I pray and hope that the second will not be as bad.

Like you said, a good diet (low fat diet) and exercise is very crutial after treatment.

Joyce hang in there and my prayer for you is that at the end of the herceptin treatment, you will be cancer free. Have a wonderful Sunday and remain blessed in the Lord.
May

coug90's picture
coug90
Posts: 59
Joined: Nov 2004

I was dx with triple negative breast cancer in December 04. At the time my doctors described it as this gansta standing across the street wearing leather and chains... kind of a scary metaphor! But I've been in remission for 3 years now. Please feel free to contact me with any questions - I'll try to answer them for you. I also blogged my journey on my personal page - Coug90.

God Bless,
Sharon

blessing43
Posts: 11
Joined: Jun 2008

Hi Sharon
I finally found some one who has gone through the journey of triple negative breast cancer. I thank the Almighty God for your life because everything I had read about this diagnosis seemed very negative - like it is the worst type of breast cancer. I believe that God has the final say in our lives. I visited your personal page and your story is very facinating and encouraging. I will like to know what you have been doing to keep fit and what type of diet are you on since after your treatment? Hugs and remain blessed in the Lord.
May

dancingfan
Posts: 19
Joined: Apr 2008

I too have triple negative breast cancer. I had a mastectomy and reconstructive surgery (trap flap). I was lucky I only had one lymph node that was involved. They put me on a trial that consisted of 4 treatments of A/C each was 2 weeks apart. I finished the Chemo the last week in May and I still feel crummy. My abdomen hurts after 4 months now. I am looking for others who could guide me as to when the pain will subside. When will I feel normal? Where are you at in your treatment? I wish you the best.... God Bless dancingfan

loisbarrie's picture
loisbarrie
Posts: 12
Joined: Jun 2007

Hi: I'm triple negative, and was diagnosed at 46. My first onc gave me a "poor prognosis"..and I was a hospice nurse then...which meant 6 months or less to me. I went for a second opinion, was given a green light to life, and did the chemo and radiation treatment. Now I have 40 extra pounds to lose. So, I hired a personal trainer, get a message every other week, changed hospitals/doctors again...to one that focuses more on recovery after treatment. They offer cooking classes and exercise specific to us. I'm taking a Tai Chi class soon. How do I do this and work? I don't work much....I have cognitive side effects that impair me still. I have borrowed money from a relative and am pursuing other financial means. I AM going to do whatever I can to add to the preventive piece because these other things ARE my medicine. I'm a squeaky wheel with my insurance company, etc. As long as I get the "grease" I need...I'll keep squeaking! ha.
lois

epgnyc
Posts: 138
Joined: Apr 2003

Sorry, I haven't been on-line in awhile and just saw your question. I was diagnosed in 2002 with triple negative breast cancer. Like you I was kind of horrified by all the negative (no pun intended) things I was reading about this particular type of breast cancer. In May of this year I had my 6th anniversary with no recurrence -- hooray! The good news is, like many other people here have noted, chemo tends to work more effectively for women with triple negative breast cancer. And while rates of recurrence are initially higher among women who are estrogen/progestrin negative, once you pass the 5-year mark the statistics even out and you have no greater risk of recurrence than the women who are estrogen positive and have been taking Tamoxifen, Arimidex, et al. Of course getting to the 5-year mark can be a bit unnerving. Being triple negative sometimes feels a bit like being the orphan child of breast cancer, but not all the news is bad. Plus there is lots of research going on now for treatments down the line for triple negative disease. Good luck -- I'm sure you'll do great.

makaha62c
Posts: 1
Joined: May 2009

I've just become a CSN network member and am looking for the info about triple negative. I was diagnosed about same time as you were and finished chemo and radiation two weeks ago. Now, I am thinking what's now. No targeted therapies are available for us. Exercise, good diet, mental health, good sleep...I can do many good things for me. I still feel fear being a triple negative. It is great for me to read all the experience that you went through.

Kimi

dmdudra's picture
dmdudra
Posts: 50
Joined: Apr 2009

I too was diagnosed with triple negative breast cancer.. I started A/C treatment in January and was done by end of February I started taxol in March and I am done with treatment #10 with only 2 more to go.. I lost most all my hair in February and just shaved it all off. with A/C I did have some nausea but with the meds my doc Rx I did fine.. the Taxol has been a piece of cake... in fact I have hair regrowth.. if you want to know any other things please let me know..

Mama G
Posts: 764
Joined: Nov 2009

My sister just lost her battle with triple negative after 3 1/2 years of fighting for her life. However, now that I look back I wonder why they didn't keep giving her the chemo since it was working so very well for her! She was tired of it and asked for a break, at that point the cancer took over.
Has anything new been found to help with this?

survivorbc09
Posts: 4378
Joined: Jun 2009

I am so sorry about your sister Mama G. The other posts are old, so, I don't know if any of them will post back to you. I hope so. If not, you might try private messaging them on here.

TLynn0102
Posts: 86
Joined: Dec 2009

Hi May,
I hold a membership card to the Triple-Negative Receptor Club..Welcome to you! It is not as bad as it sounds. When I was diagnosed I had immediately told my Dr. that I wanted a bi-latteral mastectomy with reconstruction. My oncologist ran the test for the BRAC1/2 gene because of my family history and sure enough I'm a member of the Carrier Club too! I was told that the cancer had not ventured into the lymph nodes when they did the biopsy but I was a Stage 1 Grade 3 patient. Because the grade was a 3 the treatments were very agressive. They gave me 4 AC chemo treatments followed by 16 weeks of Taxol. I cannot take any of the preventative medications but did have my ovaries removed and a hyst that was done years ago. They tell me that after all of this I should not have a reoccurance of BC again. Knowing that you do not qualify for the follow up medications is the hardest part to adjust to. Talk with you doctor and get all the information you can on your dx. This will help you as you move through the treatments. Feel free to ask any questions you want or to compare notes with me as you go through this, I will be more than happy to share my experience. God Bless.
Tracey

Mama G
Posts: 764
Joined: Nov 2009

I didn't ask too many questions out of fear, but I am more confident now that I've been on this website and will come prepared at the next Onc appt.
One of my "triples" was 5% positive.... The first onc was saying it's the same as triple negative, but the second was so upbeat and happy that it was positive she gave me a big
hug!

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

Hi Blessing, I was dx with triple neg bc in July 09. Stage 2, tumor grade 3. Lymph nodes clear, had a simple mastectomy and the pathology report came back absolutely no cancer cells in the breast tissue. I just completed 4 cycles of Cytoxin/Taxotere 12-11. Becasue of my pathology report I do not have to have rads. Initially I was terrified by the triple neg but not anymore. Chemo loves aggressive tumors and works well. There is research being done but it's for more advanced cases which gives me hope should this recur.
Don't let all the negative talk about triple neg bc freak you out. Google it in and you'll find tons if info on it. My onc was and is very upbeat about it. There is a Triple Neg BC website but I found most everyone to be very negative and not at all supportive like this wonderful website.
My onc said I have a 15% chance of recurrance and I just am going to live my life and not worry that triple neg bc is "so much worse". Educate yourself about it and you'll feel so much better. I know I certainly do. We are all in this together and we are lucky to be surrounded with such great support.

Hugs, Judy :-)

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I could have been triple negative and didnt know it. My first primary was 15 years ago, all they tested for was estrogen pos or neg. I was neg. I had 6 months of CMF. I am estrogen pos now. anyway certain cancers are more aggressive and everyone wants to be on that "good" percentAGE. of course. but mostly it determines what they giveyou for treatment. .You can have no nodes and survive and lots of nodes and survive. I asked them to not give me percentages. Just would not be helpful BC is survivable and thats what I want to focus on for myself and for all of you . HUgs

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Thank you for your powerful and simple statement of facts. BC is survivable, whatever percentages may be cited, and however any oncologist may interpret them.

survivorbc09
Posts: 4378
Joined: Jun 2009

I wish that they wouldn't give us percentages unless we ask. I agree with carkris on what she wrote. Bc is survivable and we need to focus our attention and energy on that!

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Blessing, I was dx in august this year with triple negative bc stage 3c with a 6cm tumor. I have completed 4 a/c and 9 of 12 taxol. My chemo will be done jan. 14th then I will undergo a bilateral mastectomy, all lymph nodes and both ovaries in mid feb. I too was very scared when I was first dx because of the stuff I read on the internet. My doctor told me I have a 30% chance of putting it into remission over a five year period, I guess that five year mark is the magic number. I take it one day at a time, after all that's all we have is today, yesterday is gone and tomorrow isn't here yet. I am a fighter and I don't let my diagnoses get me down, I try real hard to stay focused on one day being cancer free. I'm 38 years old with a son in high school and a daughter in college, my daughter has been by my side every step of the way, she is a nursing student and bless her heart for asking all the questions I didn't know how to ask. Our fight may be a little longer or a bit more difficult but their are many who have beaten this beast and so can we. I'm a bit scared of the upcoming surgery but that too is another step closer to cancer free. We can do this!!
Hugs and prayers,
Kari

LadyParvati's picture
LadyParvati
Posts: 328
Joined: Oct 2009

I was diagnosed with triple negative on Sept. 30 of this year, so I'm just beginning my battle. Doctors have so hoped that it would NOT be triple negative that tests have been run 3 times trying to find an error, including the Oncotype DX prelims. Ah, well. I am where I am, and I'll deal with whatever I have to deal with!

I agree, reading all the research offers a more negative perspective, but we still have to remember that it is not a certain death sentence to be diagnosed with triple negative! I like to look at the other side of the coin all the time--when I'm told the risk of recurrence is higher, I look at the probability of it NOT recurring--which is still quite a bit higher than the risk of recurrence! So the odds are on our side. As several of you noted, there are many survivors!

I am determined and a fighter, too, so I'll be doing what I can to reduce my risks. I've reduced the fat in my diet as well as the alcohol (even through the holidays!), and I've started walking more, though our big snowstorm messed that up for the past several days. I'll get back to it, though!

So we're in a special sub-club of the big club--the Triple Negative Club!--let's fight together!

Hugs & prayers, Sandy

rdy2rtr
Posts: 2
Joined: Dec 2009

I was diagnosed with triple negative breast cancer in September of 2009. My mother died in 1990 after her breast cancer metastasized so I have a family history. I was initially told by my surgeon that I would only need radiation based on the size of my tumor, the fact that it was non-invasive and there was no lymph node involvement. I thought "oh I can handle this; no chemo!. But I met with my radiologist and she wanted me to talk to my oncologist first based on the specs of my tumor. The oncologist explained that I had TNBC and the tumor was a grade 3 which meant it had a good chance of recurrence without chemo. I was so bummed... all I could think about was the way chemo affected my mother 20 years ago. The oncologist gave me a lot of information and I did research on my own and of course decided that I needed to complete the 6 rounds of chemo after reading that TNBC only responds to chemo. I'm part of a chemical trial which is trying to determine if adding the drug AVASTIN to other chemo drugs will decrease the recurrence and increase women's life spans. I've just finished my 3rd round of chemo. I experienced tingling and extreme tenderness in my feet after my 2nd round. It's only the second day after round 3 and so far so good. I've decided that the cancer cells found in my body were meant to be a wake up call to take better care of myself! I've stopped being afraid and opened my eyes to the REAL joys of life. I want to wish all of you a Happy New Year and New Life!

rugobraun
Posts: 2
Joined: Jan 2010

Just read your post, this is my first time on here and we are pretty much in the same boat, I'm 43, with a size 10.2 tumor, and need to start chemo asap. I think on Jan. 12th. I am really scared about all this happening so fast for me. I was just diagnosed in November. It seems like all my options are now limited. I can't have surgery until after chemo (five months worth), and maybe even after radiation too. I have a daughter, 22, and she is just a blessing too. My son is in high school. I am still being staged. Had the lymph node biopsy last week to see if it has spread. I also did 4 more breast tissue biopsys last week too and have a bone scan planned as well.

TLynn0102
Posts: 86
Joined: Dec 2009

I think that all of us here can honestly say that from the time you are diagnosed until you completely finish with your treatments your life is just short of being on a Mr. Toad's Wild Ride. What amazed me the most about the process is how fast everything went. I remember feeling stressed about the diagnosis itself and exhausted from all of the appointments, tests, doctor meetings, etc. that needed to take place just to begin the process. No where in the book I received did it tell me to hang on for Mr. Toad's Wild Ride. Things do settle down a bit once all the important tests and appointments are completed. Having your family and friends around you will give you the strength you need to get through all of this. There is a light at the end of the appointment tunnel. Hang in there!

cjhw
Posts: 3
Joined: Jan 2010

I am just beginning Mr. Toad's Wild Ride. I was just diagnosed last week and just was told about this site today. You are all so uplifting and full of information. I see my oncologist tommorrow and after reading this I have even MORE questions on my list. All these posts give hope!! Hang in there everyone....I am sure I will be back tommorrow after my appt with questions!!

rdy2rtr
Posts: 2
Joined: Dec 2009

I want to ask how you ladies managed your chemotherapy side effects. I have completed 3 rounds of chemo and I must admit that I am considering stopping after the 4th round; I'm scheduled to complete 6 rounds. I've had to have injections to increase my white blood count. The joint pain caused by the injections was horrible. I'm feeling like my body can't handle 6 rounds; the chemo knocks me out. I NEED ENCOURAGEMENT!!!

boppel
Posts: 26
Joined: Dec 2009

I am so sorry , I know what you are going thru. Just a little tip....I took the shots in the evening , so I would sleep thru the worst of the joint pain, it helped. Please try it and don't give up, it will get better. Hugs....em

Kimberly Ann's picture
Kimberly Ann
Posts: 3
Joined: Jan 2010

Nice to meet you! I was diagnosed with triple neg. Breast cancer. There isn't a lot of info out there about it. From what I can gather if there is no recurrence within the first several (3-5) years then the chance of recurrence is very little. I have been cancer free for 2 and half years now. I haven't had the opportunity to meet anyone with triple neg. yet. I was diagnosed at 38. I have no kids and no family history of cancer. I was under an extreme amount of stress when I got it though. I was considered stage IV. Some had spread to the lymph nodes and there was somehting suspicious in my lung. I had chemo, radiation, and surgery. So far so good!!

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

I am a fellow triple negative bc survivor, diagnosed at age 34, about 13 months ago now. I've finished chemo and rads, too. There is a site, www.youngsurvival.org, that is geared toward younger women with bc and has lots of triple negative survivors. So if you want to talk more about tn issues, there's that resource as well. Nice to meet you.

Mimi

Darlene_Mays
Posts: 20
Joined: Jan 2010

I have read your blogs many times, and have always gotten some degree of comfort from them. I, too, am diagnosed w/TNBC, and will begin chemo on Feb. 1st. I am frightened by some of the postings I have read about the pain/discomfort of chemo, I hope I am strong enough to make it through the treatments. I will be getting TAC, which seems to be the standard. This is my second bout w/BC - but I took Tamoxifen for 5 years, and it seems statistically the odds of getting this more agressive BC was pretty good (didn't know it then, but know it now!) I am now age 62, but have been fighting this fight since age 50.
Just wanted you to know your postings are helping...Thanks and Hugs!

angelsabove
Posts: 1
Joined: Feb 2010

Hi....I just signed up today and am learning my way around the site. I saw your post and I just had to respond. I am 36 yrs old and am also triple negative. I had a 4.7 cm tumor which had spread to 3 of my lymph nodes. I did have a double mastectomy and chemo and radiation. i am 2 weeks post radiation. I am so glad to hear that you are doing well 2.5 years later. Please take care and would love to talk with ya sometime.
MAY GOD BLESS US ALL

lndsmom
Posts: 20
Joined: Oct 2009

I was diagnosed in June 2009 and started chemo in July. I finished chemo on 10/30 and had a mastectomy on 11/30 with 3 nodes positive. I was Stage 3a, Grade 3 (a 5 mm. tumor). I should be starting rads the week of 1/18/10.

The best part of following this schedule is that you know whether the chemo is working or not. My tumor was 6 cm before starting the chemo. The nodes were also palpable before chemo and could no longer be felt by the 3rd treatment. Although we had hoped the tumor would shrink more than 1 cm, it didn't make a difference in the type of surgery that was required.

On my last visit with my oncologist, he said there is no reason that I shouldn't live the rest of my life cancer free! He gave me no statistics...and I'm glad. I only want to know that he is optimistic as is my surgeon. It makes me optimistic.

I still have a long road to travel, but I'm looking forward to graduating from rads and moving forward. I have a life to live!!!

Penny

heismyhope
Posts: 1
Joined: Feb 2010

This is my first post. I have had a lumpectomy and radiation via mamosite. Surgery Dec 16 2009 and Radiation Jan 25-Jan29. There was confusion in my Testing so radiation was done first but now that I am Triple Negative I have been advised by one onc to have TC 4 times 21 days apart and by another to have TAC 6 times. 21 days apart. The first onc says the Adrianmycin part is too hard on the heart. The second onc says that is because the A is given in a short time and shocks the body but if given over a 4 day period is less damaging to heart and very helpful in avoiding the cancer returning.

I am confused and would appreciate any info anyone has on continuous infusion of the A (administered by wearing a pump over a 3 or 4 day period) as opposed to short term (one day)treatment.

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Hello, Heismyhope. I am aware of new trials suggesting that Adriamycin does not help as much as originally believed and that it may not be worth risking heart damage. But, the only treatments that are in standard use for TN are TAC as the one onc. has recommended; or, dose dense AC+T. At least, that is my knowledge.

I myself had TAC. Many of the triple negative women on youngsurvivors.org have gotten dose dense AC+T. You might visit that website for more info. Also, you might visit TNBCFoundation.org.

It is hard, isn't it, to make such an important decision when you are receiving widely different opinions?

For myself, if I had it to do over, I'd take AC+T, but TAC is proven successful against triple negative cancers as well.

My best to you. Please let us know what you decide to do. You will find much support, wisdom, and friendship here.

hhfheidi
Posts: 2
Joined: Feb 2010

Cytoxin and Taxotere X4 given three weeks apart is a very acceptable regimen for TNBC without the cardio-toxicity of Adryamycin. It is one of the protocols used by Sloan-Kettering (who also invented the AC-T regimen).

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

I'm TNBC and had a simple mastecomy, Sentinal Node Biopsy clean, no nodes involved and no cancer cells found in breast tissue after mast. I had 4 cycles of C/T three weeks apart. My onc. did not want to use A becaue of the possible effects on the heart. But I am 67 and maybe that made the difference. But C/T is also a standard cocktail used for TNBC.

It's really hard to decide when you have two doctors giving two opinions, but no two doc's agree about almost anything. So it comes down to your choice or even see a third onc. This is your body and someone else can only suggest but we need to know all the facts to decide.

TNBC is not the end of the world. Definitely go the the triple neg website that was posted. One great thing, once our treatment is over, it's over, none of that five year stuff that can cause side effects too.

Good luck with your decision and keep us posted. Google for info, I got tons of info when I was first dx.

Hugs, Judy :-)

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Wouldn't it be nice if there were at least one guaranteed chemo regimen that worked every time, for every woman?

Guess the word for that regimen would be: CURE.

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

Amen!

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

Bumping this thread up for goblue!

hugs,

kederrick
Posts: 7
Joined: Jun 2010

I was diagnosed with triple negative breast cancer in Jan 2010. I was 45 years old. I immediately looked at my husband and said "I won't see Trevor, our grandson (who was 2) make 5 or my daughter get married. My only personal experience with breast cancer at the time was my mother, who was diagnosed at age 28, had a radical mastectomy followed by chemo and cobalt treatments only to find it returned in her liver a few months later. She lost her battle at the age of 30. Naturally I assumed that the same thing would happen to me. I live two hours from Houston and was determined to go to M.D. Anderson. God had different plans as they could not get me in for 6 weeks and that would be to redo my mammo, ultrasound, and biopsy and then schedule an appt with a doctor afterwards. I knew it was aggressive, however, at the time I didn't know it was so rare or just how bad. A family friend called and told me about her experience and her doctor in Baton Rouge. He is a christian man, world renown, and specialized in breast cancer only. I saw him a week after receiving my biopsy results (which at the time said it was malignent but I was still awaiting the ER/PR/HER2/and Fish results). The day I saw him I had gotten my biopsy results showing the triple negative but still waiting on the FISH test results. At that time the tumor was .90 cm at the largest area. I had surgery 17 days later and opted for a bi-lateral mastectomy. By the time the surgery was done the tumor was 2.5 at the largest area, giving me stage 2A breast cancer. There were no nodes involved. I began chemo (Taxol and Cytoxin) three weeks after surgery. The day after treatments I received a shot of Nulasta which helps keep your immune system built up. Four treatments three weeks apart. My last treatment was May 19. I feel great and confident that I did the right thing. I was cleared to return to work July 1. (I teach elementary and the exposure to that many kids could have been dangerous during chemo) and I go back to the doctor in August for blood work (tumor markers). I was also genetically tested for the BRCA 1 and BRCA 2 mutations which I did have one of those. Since I don't have my ovaries or either breast now we will just keep a close eye on things. But as of surgery I was "technically" cancer free at that time. God knew what was best for me and I have the upmost conficence that he sent me to the best in the world.

faith_trust_and_a_little_bit_of_chemotherapy's picture
faith_trust_and...
Posts: 300
Joined: Jun 2010

I was also diagnosed in January of 2010. As a single widowed mom, I had similar thoughts...I won't see my daughter graduate from HS. I returned to work, also teaching, as soon as I was cleared by the surgeon. I just finished my 6 course of TAC today. I chose to do chemo on Fridays, rest weekends, and returned to work on Mondays. It has been an education just watching the changes my body has gone through.

I asked for all my labs as I have finished my chemo treatments and was surprised to see that my markers have been going up. The nurses assured me that with my triple negative status this is not unusual, but I'm concerned after reading this board this evening. I see the radiologist for a consultation in a week and it looks as though "how I spent my summer vacation" will be spent with daily radiation treatments.

My chemo nurses also said, my hair should begin to return in about a month, the taste of food and neuropathy in my feet should take 1-3 months, but that everyone is different so...

But the blasted chemo is done!

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

My beloved Moopy (dx'ed Nov 2008 with Stage IIIa TNBC) and I were pretty darn happy when she finished her sixth round of TAC in early May 2009. We knew we had a lot ahead of us with the radiation, and we were right. But we felt the first, and worst, part of the trip was over. And we were right about that too.

You're doing the right thing with your aggressive approach to getting information. But tumor markers... well, even the oncologists themselves don't agree on what the tests mean or on how to use them. I think one is best off *not* making a big deal about them and let the onc keep track - that's the policy Moopy's oncologists followed and it worked for us.

I do recall that last summer, right after Moops finished rads, her markers were a tad on the high end of "normal." Even though nobody knows what "normal" means, we felt spooked. But on her next onc visit, the markers went down and they are staying down. That would support what the nurses have been telling you. So celebrate!

And please drop by often. There are quite a few hormone negative (better than "triple negative") ladies here and their SOs too. Everyone is in the same boat here, and everyone always pulls together. Still, sometimes it helps to talk with the people assigned to the same oar as you...

God Bless,
Joe

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Big congrats to you faith trust and..! You completed a huge milestone! And, that isn't easy!

Wishing you continued good health and happiness!

faith_trust_and_a_little_bit_of_chemotherapy's picture
faith_trust_and...
Posts: 300
Joined: Jun 2010

No one mentioned the cumulative affects of chemo, it seems they eek out the information on a "need to know" basis. Hell, after number two I was ready to power wash the patio furniture and wondered what all the fuss was about. I admit to feeling beat after this final TAC round, I'm trying to be kinder and gentler with myself.

When I was first diagnosed my daughter was online with a friend and started asking me some very pointed questions...seems her friend's mother is a survivor and she knows a survivor and they graciously met with me and shared their stories prior to my surgery. I email a small caring group of friends with updates on a regular basis.

There would seem to be an underground of supporters for us through this trial. Smiles on the faces of other women that see us and not see past us. Maybe it's the scarves, night caps, or lack of eye brows. Maybe they see our fatigue. I had a woman, a stranger, reach out and pray with me in the bookstore yesterday, it ended with an embrace.

But I am rambling, it must be sleep deprivation and I have a long commute and work tomorrow.

Truly I thank you for your words, I will continue to seek the answer to the increased marker numbers, but try not to make myself crazy over it. I will keep it mind they are simply numbers.

Bless you all.

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

bumping up for scubagirl

arkansasgirl's picture
arkansasgirl
Posts: 84
Joined: May 2009

Hi

I'm triple negative too. I also have a very rare type of BC that chemo and radiation has
no effect. But after being DX in April 2009 - had both breats removed and 6 rounds of
chemo I'm cancer free as of FEB 1, 2010.

My motto is: Cancer won the 1st battle and I won the 2nd but the war is not over for I
will not give up.

God Bless You

ARKANSASGIRL

24242
Posts: 1417
Joined: Mar 2001

I think I was worried more about the stage since chances for survival lessoned with each stage. Sure triple negative has less options for treatment phase and we definitely hit hardest with chemo and radiation. I was stage 3 IDC bc with 11 out of 21 positive nodes and HER triple negative at the age of 36. My chances for survival back 14 years was less than 50% with all the treatments in place. 14 years later feels pretty good even though have more health issues but dealing with them is all I can do and press for quality to my health is all there is. Easy no but doable for sure...
Tara

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Just wanted to thank you for your post. I was stage 3 with 6 pos. nodes. Nothing is as encouraging as hearing from someone who survived many years since diagnosis. Thank you for taking the time to come here and share your experience. You help me hope! My best to you.

sportsmom63
Posts: 1
Joined: Sep 2010

Dear 24242, just wanted to say thank-you for your post. It is very encouraging to hear you are 14 years out. Most people I personally know are estrogen positive and it is so nice to hear on this site from those who are triple negative. I was diagnosed June 6th, mastectomy on June 22nd and chemo started July 28th. I will be having my 4th of 8 treatments tomorrow and I am doing well so far. Thank-you for your post, Diane

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

Welcome to the awful little club nobody wants to join, Diane. It's good to hear that you are holding up well under the chemo and hopefully you will keep us all updated on your progress in the fight against the beast. There are quite a few TN ladies here, including my beloved Moopy, so if you have any questions do not hesitate to ask away!

Best,
Joe

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