Calling all TNs

GoWithTheFlow

happy news Lovely!!!!  I hope you figure out what it is soon though!

Lovelyface

Doglover2013 - This link has information - not sure whether to believe or not, but something to ponder upon when deciding your treatment drugs.  It is just a stupid study out of the million theories.

http://news.vanderbilt.edu/2013/03/breast-cancer-study-explores-therapy-to-slow-recurrence/

Worrywart9390

Doglover - I chose TC over ACT - the doctors gave us a choice of 3 routes,  both the surgeon and MO agreed we were making the right choice for me.  The ACT from everything they printed for me gave me 4% better chance of being recurrence free after 5 years.  I don't think there are any right or wrongs, it was a choice I discussed with my husband and doctors and decided that TC was right for me.  I would say get all of the information you can and make the best choice possible and don't look back. 

Good Luck to you.

Lovelyface

Thanks GoWithTheFlow - The Onco. talked very positively about TN, she said that I was almost at 3 years (to be exact on July 20, 2013), and she said it is wonderful.  She is taking it from diagnosis.  She said my numbers were amazing on the blood tests, but then I told her in 2009, they were amazing too, nothing out of range, and 6 months later, I was diagnosed, so ????  I gotta be happy TODAY, we'll see what tomorrow brings.  Hope everyone is having a good day today!

When I was freaking out yesterday and crying with the pain, one co-worker told me to medidate, looking at me with suspicion that I am screwed up or that I am too "negative". When I told her, I already meditate each morning for 1/2 hour, her advice did not stop there, then she said, do it in the evening too.  She meant well, but that was pretty irritating.  Another one told me to be happy, always smile.  I swear, I am a good person, so I never wish anyone bad, but soemtimes it is hard, and I feel like saying just go through this and see if you can smile and medidate.  So irritating.

GoWithTheFlow

People just dont know what to say.  I think unless you've been through this, people just don't get how we worry about reoccurance.  Since this has hit me back in December, my motto has been One Day At A Time.  I just cannot deal with more than that.  ((HUGS))

Worrywart9390

Lovelyface, Its true, people just dont get it.   I dont talk too much in front of people cause Iknow theyd think i was making a big deal of things..... they dont even want to hear about triple negative.  To the average person, breast cancer is no big deal, easy to beat, lucky we got this and not a different cancer.   IT MAKES ME CRAZY TO SAY THE LEAST....but I just stay quiet and deal with things on these forums.

People say the weirdest things to me, my father in law told me "Well, its something we all have to go thru at some point in our lives" ( and i was like really, I'm 48 , I would have been happier to get it later after my kids were raised )    my sister in law said , even after i told her triple negative, agressive , unpredictable, blah blah blah, oh well you'll go thru a rough time, but you'll be fine....Really?? my doctors cant even tell me that....hahahahahha  I can go on and on.........................It makes me think about things I've said to people that have been sick.  I think I have mainly listened and offered help but I will certainly be more careful in the future...................................                      We can only do the best we can and pray we beat this monster.  Try and stay strong. 

aeryno

Hi everyone, I am 36 and was diagnosed with TNBC on April 12.  After meeting with some docs 20 miles away I decided I needed to have my treatments much closer to home.  It took a while but was finally able to secure an oncologist and surgeon (whom I both really likeh) very close. In fact the oncologist is less than a mile from home.  

I was scheduled for a right lumpectomy with sentinel node biopsy on 6/6. The last imaging that was done was April 16. Went into the breast center to have the wires inserteed and when they did they discovered that it appears the cancer has grown along the tracking of the biopsy. Awesome! Surgery cancelled.  Don't know the exact size yet.

Met with the oncologist that afternoon and started chemo yesterday - Epirubicin and Cytoxan - dose dense for four treatments likely followed by a 12 week / once per week regimen of a taxane.  That may change as we may elect to do surgery first.  

Chemo went well yesterday - everyone was so nice and I received Zofran and Emend in my IV so other than having to use the restroom every 30 minutes all was well. Toward the end I felt a little loopy like I had a few drinks and was slightly buzzed and a little dizzy.  I napped in the afternoon, ate lunch and a small dinner, chugged 2 quarts of Gatorade/Propel (ew, so not used to drinking those!), plus water, took a post walk dinner and slept on and off throughout the night - mostly from needing to use the restoom.

Felt ok this morning, went for my Nuestra shot and took Tylenol an hour before as recommended by the nurse.  Today's nurse said Aleve was recommended for bone pain so I went to the drugstore for that, sensitve toothpaste, Biotene mouthwash, Priolsec, and a few other things to have on hand just in case.

Tomorrow I got for an echo and CT scan since we weren't able to get those in prior to the chemo as the doc wanted to move fast. 

Thanks for all the tips and advise. Am very much happy to be one step closer to beating this!

Kayak2

aeryno, just wanted to mention that Claritin (yes, Claritin) is recommended if one has bone pain from the Neulasta shot.  Can be taken prior to the shot and for the next day or two (in case you don't have relief from the Aleve or Tylenol).  Good luck to you.

slowloris

I opened a fortune cookie today. And it said......"Everyone around you is rooting for you. Don't give up!"

I really needed that today.  

bak94

Slowloris-what a great fortune cookie! Even though you don't know me I am rooting for you!

aeryno-sounds like you have a great doc, getting things started so fast. How nice to have treatment so close!

Stupidboob-Sorry to hear about the heart problems. I had a constant elevated heart rate and very high blood pressure caused by the abraxane or avastin that I was on, doc thinks it was the avastin. I was also put on a beta blocker. I did a stress test on the treadmill and thought I was going to kill over right there! I was able to complete it thank goodness, didn't have to do the chemical one. I am still on the beta blocker. Are you having bad side effects from the beta blocker? Maybe they could try a different one? Thank you for the pm! I think I am doing a bit better.

Lovelyface-I have pain every day. I worry also. My bloodwork was all good and I will probably have yearly scans in August. My tumor markers are not as low as yours but pretty much have stayed steady after treatment, they were a bit out of range before treatment so doc thinks they are a good measure for me. My pain seems different than yours. When a wake in the morning it is like my whole body is in a cramp! My leags, arms, feet and hands. It is hard to explain, but feels like my muscles all shrank and are pulling super tight. As I start to move around and stretch I get a bit better. It seriously takes a few hours for me to get the stiffness/cramping worked out, and then I start to feel okay, almost normal by the end of the day/evening. Nobody really gets it, I think they think it is anxiety and don't understand why I can't do a whole lot. It is frustrating. I want to work and do more but I can't. I do think mine is estrogen related because everything got way worse after my hysterectomy. Nobody has suggested testing my hormones, but I guess it doesn't matter, can't do hormone replacement and my doc wants me on tamoxifen. I have terrible neuropathy also. My hands and feet are bad. I hate stairs because I have to watch every step, not sure where my feet are without looking! My doc ran a bunch of blood test to see if it was some kind of muscle disease and everything was good.

For those worried about the taxol study, I agree with those that said it has worked for many in the past and that is why they still use it. I had ac followed by taxol every 3 weeks in 2003 (not dose dense) and I did just fine. I had a new primary in opposite breast, docs are convinced that it was not a recurrence. My original tumor in 2003 was large, 3.5 cm and I had 2 positive nodes. My current doc thought my treatment was so successful the first time he gave me ac followed by abraxane/avastin. (Not taxol because I had a hard time with it the first time). I had a complete response, as I did neoadjuvent this time. And yes, I had AC TWICE!!! 4 rounds the first time and 6 the second!

OBYX, Kathy, LuvRVIng-Thinking of you and all others here on this thread! I wish I could send a note to EVERYONE, but my fingers are getting weird from typing too much!

bak94

Okay, I updated my signature finally and realize how much CRAP I have been though this past decade. No wonder why I am tired and crabby and weepy! I know many have been through much more and I have no idea how you stay sane. On the discussion about how you are never given more than you can handle, I also say BS:) I am an anxiety ridden, emotionally unstable, crazy person! Funny thing is many people have told me how well I handle everything and how I seem so happy despite all of this. Maybe I should have been an actress because I certainly don't feel that way! Only you all know the truth!

Cocker_Spaniel

OMG ladies not only has the demented witch got a hole in her roof (a quick get-a-way on her broomstick) but she's even trying to gnaw her own leg off.  Gave me my first real laugh of the day Kathy, as usual.  

kathyrnn

First some specifics, then I have some questions for the relapse or high stage ladies.



Schatzi- Keep taking the GABA. I stopped taking it for 2 weeks once and my leg very promptly showed me who was in control! At least I learned that the GABA actually helps.



Dolce - I did e-mail Vanderbilt. Basically said no current clinical trials for TNBC, but to keep checking their web-site.



Thanks Ruth! I take oxycodone and it does nothing for the pain, but I'm willing to try anything. They were going to try an experimental Marcaine Pump (delivers a type of Novacaine to the nerve) but that's not an option during chemo. I have another steroid epidural next week and I'm praying this one works. My doc is pretty good about trying stuff and I have a Cancer Card again and I'm not afraid to use it!!!!



Lory - I hear you about the bumps. You can do mogul bump skiing on my breast now ;-)



Doglover - Glad surgery went well. I chose TAC. I did have a slight decrease in cardiac function, but that could just be old age!!! I'd do it again. Either choice is right.



Aeryno - Welcome! This is a great place of support and caring.



Bak -Question for you, are you on cholesterol drugs? I hear you about stairs. I do so many *faceplants* my friends don't even get concerned anymore. Many of us deserve Oscars for our acting skills. (((BIG HUG))). At least we can take off the masks and be real here!



Worry, Love, Flow - I try to go with the idea that people are trying to be helpful and bite another inch off my tongue. The one that cracks me up is my PCP. He doesn't get how aggressive TN is, and has that it's easy to beat attitude.



Annie - If I can make someone laugh, my day is complete. *smooch*



OK I need some advice from relapse or more than one round of chemo ladies.



My case went before the Tumor Board and I saw my onc yesterday.

She gave me the honesty I asked for. It was a difficult visit and forgive me, I'm not ready to talk about it yet.



The results were that I was right in my main question. The Tumor Board didn't feel T-C would be an appropriate choice. (I apologize to anyone who I scare with that info, remember that's just their opinion and we all know what a crap shoot this is). They are not even sure that chemo at this point is necessarily the right choice. (They explained why the Caldor Study didn't apply to my case)



If I want to do chemo they gave me two choices. CMF - Cytoxan (again, already had it)Methotrexate-5FU requiring 6 mo of treatment or Cisplatin which is 3 mo of treatment.



They said it's basically a crap shoot and they don't recommend one over the other.



Anyone have any information why one choice would be better over the other? Two opinions and now I'm more confused (other opinion wanted TC)



I'm also thinking of contacting John Hopkins for a third opinion but I have to wait for my final pathology report. This tumor came back HER2 +2 which is equivocal and has to have further testing.

ALHusband

I am not a cancer patient. I am just a guy who loves his wife more than life itself. My wife had Stage 4 Hodgkins Lymphoma 16 years ago and was treated with Adriamycin and MOPP. Now as of April of this year she was diagnosed with TNBC, Stage 1c (1.9cm) but no node involvement. The onc says she can't have any more Adriamycin due to a lifetime limit she reached 16 years ago. So, they are treating with Cisplatin and Taxol weekly for 12 weeks, to be followed by radiation. Has anyone heard of this? Can anyone speak to the probability of success given this is NOT the standard treatment? This course of treatment was given 3 opinions AND put in front of a Tumor Board with no disagreement among the doctors. But I really don't see ANYONE else who says they're getting the same treatment! Not even one person!

kathyrnn

AL - welcome to this group. You are very welcome here and we hope you will encourage your wife to come join us.

I can't answer your question, but there are many who will come along to help.

I am currently fighting a relapse. In looking through the research studies, I found several testing the effectiveness of the Taxotere-Cisplatin combo. (Taxol and Taxotere are very similar drugs) One of the suggestions for my relapse is treatment with Cisplatin. (I've already by Taxol) So while this is not the "standard" treatment, I don't think it's also an that uncommon a choice.

My guess no one will be able to answer your question of success from any given treatment. I believe (correct me ladies) that the current stats are 77% will do fine after treatment and 23% will relapse at some point. No one knows why people fall into one group or another.

One of the frustrations we all struggle with on here is that while doctor's talk about "standards of care"......we patients are finding that little is really standard.

Please check back, because more experienced people will come along. Please don't hesitate to come join us. This thread is the best thing that happened to me after diagnosis!

Tfosher

Thanks all for your support! I plan to jump back on here in a few days and catch up but right now I am posting from my phone (we just moved). My sister found out Monday that she lost the baby. I am very sad as they wanted more children and I know it can be hard now BUT I feel she has a much better chance to beat it now!



She will be participating in the I-SPY2 trial- without being about the effectively search well on my phone- any great stories to share? It sounds promising to me. She has her petscan tomorrow to make sure it hasn't spread.

InspiredbyDolce

Friends, what do you all make about this article?  It was a surprise to me.  I didn't know that circulating tumor cells can be at 0.

This article references a study where 299 people had a 0 for circulating tumor cells.  I've never heard anyone post on the boards with a 0, or even with a 1 or even a 2?  What do you all think, is he talking about a circulating tumor cell, which is what the Tumor Marker tests identify, circulating cells?  I thought everybody carried some cancer cells.  How do you get to 0?

UPDATE:

Now I've tried to read more on the internet about what defines an actual circulating tumor cell.  They identify it as one that has shed off the primary tumor, which I think would be one that they identify and then would call lymphatic vascular invasion. Is that what you all understand this to maybe mean?

I think circulating tumor cell must be a different thing than a tumor cell burden, which is what is identified in tumor marker tests.

http://www.ascopost.com/issues/july-1-2012/too-soon-to-know-how-circulating-tumor-cells-might-be-used-to-guide-treatment-of-breast-cancer.aspx

Thanks for your thoughts and opinions!

OBXK

Bak - I heard a doc on NPR Sunday - the show was the People's Pharmacy, it was on depression, stress and fatigue. Go check out the podcast.



Kathy - I think it's all a crap shoot. I had T/C when mine came back. Since the Mets I've done carbo/gemzar which worked for three months, now doing xeloda. I hope you find your magic bullet. If only this fc wouldn't become resistant to treatment so quickly. I am so

sorry this is happening to you.



Lovely - I am sticking a pin in my voodoo doll for the unthinking co-worker. She should be limping by noon tomorrow.



Tfosher - I am so sorry for your sister's loss.



Alhusband - I am so sorry that you and your wife are going through this. I think a lot of treatment plans are based on age, general health, node involvement, etc. I hope you the answers you need and that your wife is able to tolerate the treatment well.



Hugs to luv, Annie, dawn,navymom, fighter, Heather and all the old gang.

Good thoughts to all of you just starting the journey.

InspiredbyDolce

ALHusband:

I have a manual that is a Physician's Manual for Treatment for Breast Cancer.  When I looked through it, each particular diagnosis had various chemo regimens, and I don't remember any one group having only 1 option.  Several are usually listed under the Preferred Treatment.  I will Private Message you, check your Private Messages and I can send you this manual or give you directions to download it directly off the internet.  You will need to use the flow chart in the manual to arrive at the right page for your wife (for instance, you first start with the page of the type of bc she has, then if nodes are involved or not, you click on a link that takes you to a new diagram, etc, and before long you wil be at the recommended treatment page for that exact situation). I hope this will help you. 

InspiredbyDolce

TFosher - Extremely sad to hear the update.  I wish your sister many well wishes and she tries to heal emotionally and physically as well as take on this treatment. We are all standing with her. 

InspiredbyDolce

Lovelyface,

Try not to panic until you see your Onc for a follow-up.  A couple of things, I know it may seem silly, but could any of this be the reason for the pain again?

Did you recently buy a new pillow?  Did you sleep wrong?  Did you move over a coffee table or pull back a couch?  Did you try to vacuum under a table, and when the vacuum cleaner was in the down position, you pulled and vacuumed it under the table?  Did you lift something unusually heavy, like an extra heavy bag at the grocery store?  Did you wear your purse with something really heavy in it one day or for a long period of time one day recently? Did you turn your head while holding something really heavy, causing a strain?

Does it go away with heat?  Have you tried a natural anti-inflammatory, such as Arnica? 

I kind of think also that Linda has made a good point.  A burning pain, can be a nerve pain, or a pulled nerve, or a tendon or pull.

Let us know what goes on .... thinking of you and hoping you get closure soon. 

InspiredbyDolce

OBXK - Too funny!

Lovelyface, I see I'm behind on my reading.  I'm glad everything is working out and that you had great reports from your Onc's office!!!

kathyrnn

Tfosher - I'm so sorry for all the traumas your sister and your family are experiencing right now. We'll be here anytime. You're a good sister!



Karen - you're one of the wisdom angels who has walked a long path with this. Let's send that magic bullet your way. ((Hug)). I see It hasn't gotten your incredible sense of humor ;-0

jenjenl

I finished radiation today...YAY!  My skin held up well during this phase.  I am happy to have a lot less appointments over the summer.  I have one more surgery in july to remove my left breast but active treatment is over.  It's been a long 7.5 months.  I hope that I can move on and not think about cancer everyday, I don't think I am there yet but I have hope.  Thanks for the support ladies.  xoxo

mags20487

jenjenl...happy dance for you today

tfosher so sorry for you family's pain right now

Maggie

Lovelyface

jenjeni - The memory does fade away slowly and things do get better.  Congratulations!

InspiredbyDoice - Thank you so much for caring and taking your time to write and give suggestions.  Received with a lot of appreciation, and even if I received your post after my doc appt., still it helps with figuring out what is going on.  I am taking into consideration everything, thanks again.

tnbcRuth

Doglover - Looking back, I would have skipped the Taxotere.  I have had neuropathy in my feet and legs for 2 yrs and it has been awful.  I now wear a hydrocodone 10mcg patch so that I can walk.  Otherwise, it feels like I have been on my feet for 30 days and nights and can not take one more step, and that is when I wake in the morning.  They constantly hurt.  (Neuropathy has been observed regularly in patients treated with docetaxel (Hilkens et al 1996; New et al 1996). 

My hands are now somewhat like wearing mittens all the time...dexterity is gone, so I no longer can sew, etc.  I have an irregular heartbeat, enough to annoy me from time to time, but not bad enough for intervention.  

I stopped my treatments after 4 rounds because it was literally killing me.  I know others will say they had no reactions, but I felt obligated to share so you have both sides.  Please discuss with your onc the common side effects and how skipping T would affect you.  Good luck!

julz4

Hi Everyone.....I am Julz4 & have a ?.  I was DX with ER & PR negative DCIS grade 2-3.  The tumor was 2.8 cm & had 3 spots of micrinvasion.  I had a lumpectomy with a SNB.  2 nodes were removed & both were negative.  I had 33 rounds of RADS.  No chemo.  My surgery was last year May 22.  So I had my 6 month checkup today.  I told the mammo place I was having some issues with pain, itching, & feeling things.  Long story short they did extra mammo views & a ultrasound.  Nothing new was seen.  The lumpy areas look like pockets of fluid maybe....small seroma's (sp).  Also maybe a lymph node seen.   I Then go over to see my Onc Breast Surgeon as I always do after all mammo checks.   He checked again all my concern areas through a palpable exam.  He found an inflamed lymph node further up high in the under arm on the same side as BC but not quite where the ultrasound tech scanned. My area of concern was a little below there.  My Surgeon is really cautious & is sending me for another ultrasound next Wednesday & I will see the Surgeon again after the ultrasound.  I know how nasty this triple neg stuff can be.  Has anyone ever had this "CRAP" show up with clear nodes taken out?  The way our Family Luck runs in the Toilet is why I think he is checking this out!  He told me not to worry as he has NEVER had a node come back positive after a MRI never showed any positive nodes.  But I know we all worry it's the nature of our beast to mess with our minds & play with our doubts!

Thanks for letting me spew!  Any input would be a help!

encyclias

Ruth, I am so sorry you are suffering from the side effects of the Taxotere.  Thanks for the warning.  Back in January, when I had completed my 4 cycles of A/C chemo, my onc was pressing me to do a course of Taxotere.  Having already researched the potentially long-term or even permanent side effects, I refused with the backing of my GP and my internist.  Being a diabetic, inviting neuropathy for any reason is dangerous.  But more dangerous for me was the potential of foot damage which could start a chain of future amputations.  The possibility of permanent hair loss bothered me less.

What also helped make my mind up was that the A/C chemo alone had done such a 'miraculous' (my onc's words) job clobbering the two big solid lumps, why should I risk further treatment with Taxotere, definitely a case of diminishing returns -- all that risk for just a 3mm residual carcinoma which was removed by the surgeon.  Had the A/C chemo not been successful, I probably would have gone on to other chemo drugs -- with Taxotere being at the very bottom of the list.

I've just started rads this past week.  So far, so good.

Carol

slg76

Tfosher---So sorry to hear of your sister!  I am not TN but came accross your post after searching pregnancy in the forums.  I was 33 and 6 months pregnant when diagnosed (stage III, 4cm, 0/8 nodes).  My daughter (almost 3 now) and I are both healthy now.  I know that a dx so early in the pregnancy has some other issues that come along with it.  Cancer is scary but I found it especially hard to be sick at the time in your life when you most want to be strong for your new child.  I found it easier to deal with myself being sick than to think about my daughter having a sick mother.  I'm happy to talk or help in any way I can.  I'm fairly well versed in the subject and can send you some information on pregnancy/chemo.  Sending support and a hug!