Calling all TNs

Hopex3

teresa....I know they used to give all three drugs at once..calling it TAC.  Some people still get it that way but it can be hard.  I had the Adriamcyn and Cytoxan (AC)  together for 4 weeks, every other week.  Then I had Taxol by itself for four weeks, every other week. I did fine with AC, except fatigue and Taxol was hard on my bones.  But I still continued to work all the way through.  Some people have symptons with the AC and none with Taxol.  Everyone reacts different.  I had really good results with chemo.  If I were to do it again, I would do the same.  Ask her if you did the two drug, would you be doing taxol at all after you were done with the two?   

jenjenl

I am 3/4 of the way being done with TAC now.  I get all three at once, treatment every 3 weeks for 18 weeks. 

gillyone

Teresa and Hope - my understanding is that when it is TAC it is taxotere, adriamycin and cytoxan given all at once, usually 3 weeks apart for 4 or 6 cycles. TC and AC/T are of course other options. Many of us have had AC/T. It seems to me that this study is to compare TC and either TAC ot AC/T - I can't tell which from your description. I don't think any of us can say one is better than another, only tell you what we had and how we fared and how we are doing now. Doctors would not offer an option that they thought was "less good". There are so many considerations in deciding treatment. I think you have to be comfortable with your oncologist and trust his judgement.              

navymom

Theresa, My Onc let me choose if I wanted to do TAC or AC/T.  Since I was uneducated about chemo at that time, I had no clue what to do.  So I asked her to give me what ever she would order for her own sister.  And she chose TAC.  She explained to me that both methods were equally effective in success rates.  She chose TAC because for me because she felt that I was in good shape and no other serious or chronic medical conditions.  I have been reading on these boards that some researchers are believing that giving "A" (adriamycin) is over kill for BC.  So that might be part of what the study project that your Onc is considering is looking at.  But you should be able to have the last word on how you want to go about chemo.  Do what feels right.  Ask tons of questions.  Bring someone with you to you appointments and have them write things down for you.  Best of luck to you.  And BTW I did pretty good on TAC.  Almost 4 years since dx and enjoying life.

Spica16

Hello Teresa,

To me, what your doc is asking you...are you willing to be in a trial where you will be given  either chemotherapy regimen (TC) or the other chemotherapy regimen (TAC or ACT)? Since she told you that you would not know until admitted into the trial...that is the gamble. You would not be making the chemo choice, just the willingness to be in the trial and receive whatever they assign you.

Like Gilly said, they would not assign you to a lesser chemo. Both have proven good results. It sounds like they are trying to fine-tune or streamline the chemo regimen. The more they can reduce the drugs given, the better chance of reducing toxicity, and therefore recovery time for the patient. There is a delicate balance of finding the minimum dose needed to eradicate the cancer and the absolute maximum dose that can be tolerated by the patient. If two drugs in combination work better than 3, it's a win for us!

Participating in the trial could be exciting, since it is an important part of fighting this nasty beast. If you like that idea, go for it! If you need to feel more in control of your treatment, and don't like risk, then it may not be for you.

Your doc told you what she would give you if you decline the trial. That is what she is comfortable with. Kudos to her for giving you this opportunity, even if it is a hard decision to make. Most of us never get this chance.

Best wishes ~ Shar

P.S. You can search for the trial information on clinicaltrials.gov

teresa008

Hi,

I still haven't made a hard decision yet on the chemo regimen. I did stop by the medical wig place though, and she asked me if my oncologist had said anything about an arm sleeve and gauntlet for edema? I had not heard anything from her about it. Does anyone know if it matters how many lymph nodes were removed, as far as this condition being a problem for me? I only had two lymph nodes removed. All of this stuff is so confusing.

Thanks so much for your help with any or all of this stuff. I truly do appreciate your time and thoughts, all of you who have responded to my questions.

Sending out my best thoughts for all of you.

gillyone

Teresa - I have a sleeve/gauntlet that I wear when flying. When my oncologist suggested it, it was as a precaution, not because I had lymphedema. Oncologists often make this recommendation, but I don't know anyone who uses one on a regular basis unless they have been diagnosed with LE.

Cocker_Spaniel

What do you think ladies shall we all meet here one day??

ypecora7

Hi Teresa

I hope this helps a bit. I took place in a trial. My onco said I would be a candidate and if I was interested. It was either receiving TC or ACT. You wouldn't know what you got until day before your first day of chemo. It was randomly done. It was also that if you got TC it would be shorter chemo but every week if you got ACT chemo would be every other week take a bit longer plus they would add three extra weeks at phase two of chemo the toxil part.

I'm not going to say it was an easy decision to do because it wasn't. You need to see what is best for you and how you feel about it. I think that's something that only you can decide. It's personal to everyone. I can only tell you that I did it for a couple of reasons. First I figured that if by doing this I would help future bc patients to make things easier or better in any way then I'm all for it. Can't let this monster get the better of me and if there's a way that I can aide in killing it so be it. But it wasn't an easy choice. Another reason was that because you are part of this trial the Dr needs to keep a closer eye on you and I personally felt more at ease with that. All I can say is weigh in your options and whatever you feel more comfortable with go with it.

Eventually I was given ACT. I lost my hair everywhere in the first phase of the chemo and yes I was very tired and nauseous. But for me phase 2 was worst because I ended up getting diabetes because of one of the meds. It elevated my sugar the first time almost to 450. I had to start giving myself insulin for the first time ever. Along with having very bad neuropathy. That hasn't completely left yet. But everyone is different. A friend of mine had hard any side effects at all. Thank God my sugar has gotten better. I don't take insulin anymore. But I do take one pill a day until it completely lowers itself back to normal. Dr says with time.

Also just to let you know I had 3 nodes removed from me. I never had to wear anything. They did tell me to be careful. Don't let them take blood on that arm or blood pressure. So I don't. One of my nurses told me that you can get lymphedema at any time in your life. You need to be careful not carry any thing to heavy on that arm etc. I'm lucky because I have my other arm. So I try to use my right arm more. Just be careful.

Also I ended up getting a wig. It's part of the hospital. They sized you etc and didn't cost anything. It was a gift. I only wore it once. To a dinner party I had to attend. The rest of the time I used my scarves. I got so used to them it was hard giving them up. I truly hope this helps you. I wish you all the best and stay strong. All the best to you.

Best regards,

Yani

Spica16

Gilly - I seem to be following you around, today! That's because you always have such good answers!!!

Teresa - I was measured for a sleeve/gauntlet by the fitter for my breast form and mastectomy bras, and insurance paid for it. My BS must have authorized it. Like Gilly said, it was precautionary, in case I needed to fly or was going to engage in activities that could allow lymphadema to become an issue. Anytime the lymph system is jeopardized, by node removal, radiation, or obstruction of drainage, such as from scar tissue, lymphadema can arise. Unfortunately, we are at risk for the rest of our lives.

Get a set - as a safety measure. There are some with really crazy, fun patterns!

Yani - WOW! I was getting ready to send this, and your answer showed up. You have the voice of experience to help Teresa out. Isn't this BCO site great?!!! Thanks for taking part in the trial - it benefits all of our BC sisters! 

~ Shar

ypecora7

Spica16

It's my pleasure to help in any way I can. I think this site is truly great. I truly wish I knew it existed back when I started all this. It would have been an immeasurable way of help. You are told you have bc and its shocking news to say the least.Having a support group that you can go to that has been through what you are about to embark is so great. You may have family members there for you but it's not the same. Your answers can be answered by a support group and they can truly understand because they've been there. So kiddos to all of you.



Theresa: I just remembered. I had to sign and read a whole bunch of papers to take part in the trial. One thing that I did agree to was to have my tissues,reserved and looked at so that they can be studied further. That way they can further do study's analysis, etc. It was an extra choice that you either said yes or no and signed.. But that was up to you and didn't have nothing really to do with the chemo trial. Like your decision wasn't going to get you off the trial. This may apply to your trial and it may not. I just thought to let you know in case. Good luck again.

All the best.

Yani

ypecora7

Cockerspaniel: By the way I think that pic is beautiful. It looks so tranquil and serene. Is this a real place somewhere? Looks like a postcard pic. Great pic.

SherylB

teresa008,

You need to discuss the heart risks associated with Adriamycin with you MO. It is risky for anyone with possible heart issues and the effects on the heart don't stop when the drug is done. It can have lasting effects. There is much to consider when taking what is known as the "red devil". I have many other health issues and we decided not to go with the Adriamycin, I had a small heart attack even though clean coronary arteries (it was a stress spasm when my mom died). Both my mother and brother had open heart surgery so for me it was a no brainer, No Adriamycin. If you go with the big A you will usually have extra testing on the heart before starting. My MOs PA who has done strictly oncology for >15 years told me she had one patient who wound up needing a heart transplant, and felt that using Taxotere and Cytoxan would do the trick for me.  

I don't mean to be all doom and gloom but knowing the risks before making a decision is very important to me.

Sheryl

natL12

SherylB- You just answered a question I've had in my mind ever since I started reading about ACT vs Cytoxin/Taxotere.  Which is...why didn't my MO even mention there was a choice?  I had open heart surgeries (2) four years ago to repair leaky valves. So that's problably why the Adriamycin wasn't mentioned.

Thanks for answering a question I'd never asked.

others- regarding lymphedema. I had only one node removed, tried to follow the guidelines to avoid LE, and still got it!  So who knows what will happen. Worried a lot more about neuropathy...and only got it a little bit. (Fingertips and toe tips.)

Nat

OBXK

Happy Saturday from sunny NC!

Does anyone here, live near Athens, GA? I've found an RV I think I want for my "Summer of Love Tour" AKA "The summer my Stage IV mother dragged me around in an RV" - by 13 yr old son.

It's 18 miles from the UGA Arch

PM me if you can help.

melissa119

Ypecora7



Hi. Yes I grew up in north Bergen but moved when I got married 13 yrs ago. So I didn't have to deal with changing drs. But by the time you move you will be hopefully done and just dealing with followups so you will just have to find drs you trust as much and are comfortable with. Good luck!

kostura22

Hi fellow TNS.  I was dx 2 weeks ago with idc left breast and one confirmed node so far per biopsy.  I am 42 with a 5 and 7 year old.  No history in my family on any side.  Found a lump and now here I am.  Clinical stage 2b grade 3 with tumor size 2.7 centimeters.  Besides being flipped out anyways ~ the whole triple negative thing had me scared as there is so much bad press!  I have surgery on march 7.  I am having a double mastectomy as there is suspicious tissue in other breast and I have very dense breast tissue.  I know I can do this and am a strong woman.  Just still reeling from the shock.  I wake up with a bit of doom and gloom pit in my stomach.  I hope this gets better as I do want to be positive and esp. be there for my children and family.  Any encouragement would be wonderful! 

tnbcRuth

Kostura,

So sorry to hear about your diagnosis!  You may have to let your children and family Be There For You for a bit.  It's going to take every bit of you to get thru this.  Our stats are about the same, but I did it without family.  It was difficult.

But, it has been 2 years and 4 months since my last chemo, and count myself as a survivior!  

In honor of Triple Negative BC Day, I wanted to post that I am still NED and plan on staying that way!

Love to all my oldies, and ((())) to the newbies.

tikkismom

Hello all you wonderful helpful ladies

I  am posting in regards to my daughter who was dx with TN, I have been lurking for 2 months and cannot say how much help these forums have been to me ..they have made me research,question certain things but most of all have an idea of what I needed to do as a mom to advocate for my my most beautiful treasured daughter.

My daughter was diagnosed on January 9,surgury on the 29 and Chemo on Feb 28,I might need a little help with my staging and chemo lingo. I was not sure how to put some in so I am hoping you can help me with a few things,,, she had a 2.5 and a 3 cm tumor basically one on top of the another and clear margins but lymphatic invasion I was not sure what to put in the tumor size ...do I add them up or go with the biggest? Do I count the 4cm in her biggest lymph node which by the way was the lump she felt first. She found the one in her lymph node end of November and chalked it up to nursing my second grandson who was born OCT 19,2012 and then found the lump in her breast  xmas day. I have done all the research ,read the patho report,read the book Positives about Negative and relentlessy asked questions of the surgeons and oncologist and treatment protocol. My daughter at this point is not intersted in all of the patho reports.. she is focusing on being positive to get well for her 2 sons a 3yr old boy and a 4.5 month old. We were extremely devastated by this DX and it just seemed like everytime I learnt something it was never good news.....I cried on Feb 13 when the cat scan came back clear .... it was the first good news we had since Jan 9. The surgeon if you can imagine has her staging wrong on the cover report he has her as IIB and no lymphatic invasion and its attatched to the patho report!! Anyway she is happy with that and that is where i will leave it.

I foound that this is the best forum to post on it is up to date and the information that pertains the most to us.

Her Chemo is FEC-T not sure how to throw that in a shorter version and not dose dense. And all other tests have come back clear,ct,bone ,muga, blood.

Thank you for listening and hopefuly I can put the proper sizing and what not with your help.

A very devasted and heart broken but slowly getting more positive mom

InspiredbyDolce

Hi Kostura, Tikki's Mom and anyone else newly diagnosed:  

I'm so glad that you are finding out all that you need to know.  You will find great support here, and with the internet and smart phones being so accessible by most, many patients now have the resources to be informed and become a part of their healthcare management.  

TNBC is a shocking dx to get, however I'm going to send you a manual, if you will give me your e-mail addresses.  

It explains that the majority of TNBC patients will have an excellent prognosis.  While the initial 5-year statistics are slightly less encouraging than ER+ breast cancers, the longer term prognosis is closer to ER+ for survival. The manual mentions the best opportunity also lies in the original initial treatment to concur this.  It's an excellent PDF manual for all families and patients dealing with the diagnosis.  It was written by the Triple Negative Breast Cancer Foundation and is a great source of information.  I don't see this same literature available as a download anymore, so if you will PM me with your e-mail address, I will send you this PDF manual.  

As you probably have started to find out, healthy eating, low-fat and exercise has an overall benefit as well.  Here is a link regarding this. The read might start out a little technical, but it starts to talk about the theories related to TNBC and  overall health management, including the reason for insulin/glycemic control, low-fat, high fiber diet.

http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html

There is some old information easy to come across on the internet, which may spark fear when researching TNBC.  

So, for a quick note for you, regarding some statistics, per Wikipedia:

Some types of triple negative breast cancer are known to be more aggressive with poor prognosis, while other types have prognosis very similar or better than hormone receptor positive breast cancers. ^[3] Pooled data of all triple negative subtypes suggest that with optimal treatment 20 year survival rates are very close to those of hormone positive cancer. ^[1]

Also, the Mayo Clinic has also posted some very positive stats online on their website.  So there is some positive information out there.  

Last summer MD Anderson announced the 10-year $3B Moonshot Project to target and find therapies for 8 aggressive cancers. The research is being led by 6 highly-skilled teams, and TNBC is amongst that project.  To find out more about that project, google "MD Anderson Moonshot Project".  Many of us firmly believe something will happen soon - TNBC is a hot area of research right now, and it was conveyed medical advances would happen perhaps as soon as a couple of years into the project. I mention that because 10 years might seem like a long-time out, but they predict emerging treatments to happen at the front of this mission.

I was dx'd at age 43 and tomorrow is my 14-month healthy-victory anniversary.  I never ever thought I would have to face something like this in my lifetime.  I have no family history of any health issues, and thought I was eating healthy, but once diagnosed I really found out what eating healthy was like.  It's kale/blueberry/flax blended in the mornings.  

I hope you find comfort, support and friendship here.  If there is anything I can do to help, please let me know.

Thinking of all of you today.  Big hug!

stride

Hello, I' m signing onto this thread because I want to go to wherever that place is in CockerSpaniel's photo. I recognize some of you from other threads (hi Tazzy!) and I have lurked a bit on this one. My final pathology after surgery was basal-type TN, although my initial biopsy was PR+. The TN was chemo-resistant. But I was node-negative and had a clean PET/CT scan after surgery. So I suspect my cancer was locally aggressive, but did not have the tools to spread outside my breast, thank goodness! While I think I will be somewhat paranoid for the next few years, the rational part of me knows I will never see that cancer again.

stride

Also CockerSpaniel, I loved the pic of the dog ready for the weekend! We all know that feeling--yippee!

OBXK

Welcome to the new ladies! I am so sorry you find yourselves here, but it is a great place to get support, practical advice and information.



Tomorrow, I meet the surgeon who will do my port replacement.



Wishing everyone a great week ahead...

Minicoopergirl

Hi everyone,

So I finished up my 8 rounds of chemo 2 months ago today... My question is, what do you tell people about your current condition? Do you tell them you are in remission, cancer is gone, ...? I just don't know what to say-everyone expects me to feel fantastic and be 100% positive just because I'm done with chemo, when really I feel more scared than ever and I'm still really tired.  I'm scared to death that every ache and pain is the cancer growing, when I eat something non-organic the cancer is growing back, I just don't know how or what to say when friends, family, co-workers ask "how are you doing?"... any advice..thanks

gillyone

Something like "I'm doing OK for now, or I'm OK right now." If people push for more you can explain that you are NED (which means there is No Evidence of Disease) and you hope to be NED for a long time!

But the bottom line is there is always a chance it will come back. Some of us have a very hard time with this and many others (non-cancer people) simply don't want to hear it. It is easier for them to believe we are fine. And most of us are - we just don't know.

Mini - you have not been "done" for very long and it takes a while to recover physically. Give yourself time. And mentally - it does get better with time, I promise!!

InspiredbyDolce

Mini,

This is how I proceeded - and it is a challenge, but perhaps this will give you some ideas or things to consider:

When people would ask me "how was I doing?", I always said "great!".  For one, I did feel great usually if I was out and about for them to ask me that, but perhaps more importantly, was that I expect great things.  I try to visualize it, so it can happen.  It starts with positive thinking. I also found that on my lowest days, when I was worried, if I turned the focus from myself to others, it really helped.  So some days I would force myself to get out of the house and go about, helping others.  With regard to if you are feeling worried, and someone asks how you are doing, it all goes back to, what do you want to share with them? Do you want to open up a conversation and recieve support? Do you want a hug?  Do you just want someone who will stop and listen to your fears?  What is it that you want to happen or what do you want that person to know?  For me, I wanted people to only look at me as healthy, and I wanted to return as much of my life back to before bc as possible.  It's never the same, I understand. But there came a point, later on, when I was done talking about the c, dealing with the c, and ready to see what life was now like.  You'll get there too.  At 8 weeks post-chemo, I too, was trying to find my new footing in life.  It just takes time.

We all know it can come back, that is why we have the emotional stress that accompanies a bc diagnosis.  Try to remember the best, most inspirational things that you can.

By the way, here is a link to a 26-year survivor.  This is the link to her, you have to scroll to the top of the page to see her profile name (nonijones) and read her story and update.  http://community.breastcancer.org/forum/72/topic/783934?page=2#post_2980659

If you have a rough day allow yourself the opportunity to cry, pout, stay on the couch, watch a movie, treat yourself, party with the girls or something - for that whole day.  Don't be hard on yourself that day. The next day things will appear much brighter. But those feelings will come and go. And somehow life moves forward.  You don't have to hold it together all the time, but over time, you should find more ups than downs.

What helps me the most, is knowing I worked out for the day - gives me instant control over my feelings. I feel like I have done what I am able to do.  I also eat healthy, no diet coke, no coffee - water and green tea only. BUT, there are days, when I can't control myself, and I will have 15 of those little Trader Joe's cat cookies, following by 4 squares of dark chocolate, followed by more bad choices for that day.  It's hard, but then again, Friday night we had shrimp and veggie bowls, with a tiny amount of whole grain penne pasta.  It was awesome - and I remember thinking, this is yummy, and healthy!

But do know, that the majority of women will survive this.  It is hard not knowing what our future holds.  I get that.  Our lives have changed beyond belief.  But have confidence in the treatment you had, continue being pro-active in your healthcare management plan, and expect an excellent future. 

Also, try reading Joel Osteen's book "Every Day a Friday".  There is a snippet in there about how his Mom was dx'd with bc, and now today she is a very long-term survivor.  It's a very inspirational book, that you might be able to take a page or two from and find comfort in.

I hope this post helps you a little!

Many hugs!

Spica16

Hello tikkismom,

Don't let the surgeon's report disturb you.  He has to report his initial observation of the tumor seen during surgery. This is called the clinical staging. He can see the tumor, it is usually distinct from the normal breast tissue, but he cannot see the cancer cells. Also, he does not cut into the tumor. With a lumpectomy, he tries to get good margins of normal-appearing breast tissue, but again he cannot see if there is malignant cell infiltration. The same goes for the malignant lymph nodes. This is all done meticulously, so that cancerous cells are not transferred to healthy tissue during the procedure.

With digital mammogram, ultrasound, and breast MRI, my suspicious mass size was changed several times. My surgeon estimated that he would have to remove 11cm (yikes!) of tissue, along with a Level II axillary dissection, since I had one known positive lymph node. He staged me at T3N1 or Stage3. 

The official staging is done by the pathologist...only by pathologists. They are the specially trained experts that see what is going on at the cellular level through the microscope. This is called the pathological staging.

During the gross exam of the surgical specimen (mastectomy or lumpectomy) they measure the tumor, describe the color and texture, and note the type of surrounding tissue. They also report the number of tumors found, and the number of lymph nodes found within the axillary tail (axillary dissection), and if any appear grossly malignant. You find this information on the gross description portion of the pathology report. All of these areas are dissected and representative tissue is taken and processed, so that eventually glass slides with stained tissue/cells are made. This is how the pathologist is able to describe the tumor at the cellular level. This information is found in the microscopic description portion of the pathology report.

ER and PR assays are performed, and reported in the final pathologic diagnosis. Depending on the size and capability of the histology lab (where all the tissue processing, slide making and staining is done), ER, PR and Her2/neu will be done there, immediately, or possibly sent out to another facility. That is why Her2/neu may take longer to be reported.

After the microscopic work was done on my mastectomy specimen, the pathologist called it as T2N1 or Stage2. I was downgraded!!! It seems that the tumors (4.1cm primary with 3 tiny satellites) had surrounded themselves with fibrotic, vascular, but benign(!) tissue, which had caused the mass to be perceived larger than the malignant part actually was. I have this crazy image of aliens in their escape pod - but my jedi-surgeon-knight used the force, and they are gone!!! 

Back to being serious...tikkismom, you are your daughter's best medicine. With your loving support, she will do just fine. No, it will not be easy, but it will be doable. She may not be willing or able to read her reports or look at other info, but as long as she stays with her treatments, and talks to her doctors (and the chemo nurses - they are priceless), and hugs those babies tight, she will get through this. Big (((hugs))) to you all.

~Shar aka former Histology Technician 

P.S. Besides my wonderful family and friends, the best reason for fighting through this BC journey...is hearing my 2.5 yr old grandson say "I love you, Gamma"

SherylB

Nat,

I am glad I was able to answer an unasked question for you. I would be confident in saying based on your history Adriamycin wasn't even a realistic choice.

Hang tough, Sheryl

SherylB

Kostura,

Welcome to the place we never wanted to be. Stay tight on these boards and they will provide you an unbelievable amount of support, compassion, empathy, humor, and love among others.

Hugs, Sheryl

russell33

Hi Sheryl, hope you are doing well.  I was wondering if you had #3 infusion yet?  I had mine last Tuesday.  I would say #2 was way worse especially with the body aches.  My last treatment is March 19.  Are you doing 4 cycles or more?  I am having horrible night sweats which I'm sure is from not having my periods through this.  Awful, I wish there was something they could do.  I don't sleep good so that makes it even harder.  Do you know when you start radiation?  Just curious if we will be on the same schedule.  My appointment with radiation is March 12 so I will know more then.  Have a great week.  Anne