Calling all TNs

adagio

slow loris - count on my prayers for you - healing thoughts coming your way.

InspiredbyDolce

When I saw my Onc in January he said that they know those with a pCR will do extremely well long-term, and then he said that those with even a partial response they know they will also do very very well.  So I'm thinking with how far her tumor shrunk, and the fact that the final infusion was just administered that she is surely in that category of someone who will experience very very good results long-term.  

Regarding the swollen node at neck - it could also be a reaction to a food ingredient or a chemical.  Have you eaten anything extra-processed lately (or overdone it with nuts or fish) that could be giving you a slight reaction? There are so many strange ingredients in processed stuff, that just one unknown thing could cause an inflammation.  Also, what about laundry detergents, scents or new chemicals? Chinese food or something with MSG?

Google the foods you can eat for anti-inflammatory and see if you can get it to do down naturally.  Garlic, and red cayenne pepper are anti-inflammatory.  An anti-inflammatory Ibuprofen could also work.  Sometimes if I overdo the dark chocolate covered almonds I will have a slight inflammation as well. 

Jianchi

jenjenl: I have had a swollen lymph node under my jaw on the left side as well.  It seems to be there for a long time before it disappeared.  I hope it is nothing cautious for you.  

Jianchi

slowloris: I wish you all the best on your scan.  I can relate your sadness and worries.  I too am very unstable emotionaly lately.  I saw my survivorship counselor today, and she introduced me to an app called "inner balance", you can purchase a sensor to work with you iPad/iPhone on breathing exercises.  I will update how it does for me.  Take care!

ksmatthews

Hello ladies, I was just checking in.  Haven't been on in a week or so and wow the boards was busy!  Too many to reply to each person, so I just want to let all my BC sisters know that I am saying prayers and sending hugs...

Titan

thinking about all of you going through ***())### right now....waiting to hear good news...love you all

Nettie1964

I so just want to go on with life! I want to find my new normal!  I'm so sorry for you ladies facing test and waiting and other things. My thoughts are with you all!!  If only I could get the intermittent back pain to stop, I think I would be able to relax a little!! It's just so annoying.  It's one of those things that before the dx, I would have just ignored, but now it won't leave my mind!  I guess I'm finally going to have to face the fact and ask for some sort of scan, but I'm not sure I'm ready if it is the cancer.  I'm not sure I'm mentally prepared to handle more!!  I pray everyday that it will just go away!

Anyway, sorry to moan and groan, but sometimes it just consumes me!

InspiredbyDolce

Continued prayers and good thoughts for everyone waiting on test results - sorry you have to wait through the weekend!  When I was dx'd with bc, I had to wait all through the Christmas holiday weekend, and through that Monday due to the way the holiday fell.  I was climbing the walls - and the timeframe to get results took longer.  The bright side of things was that since I found out on 12/27 I was able to get straight into surgery on 1/4, because the majority of people are still having fun and aren't having complicated procedures at the first of the year!  When I was waiting for results, oddly enough, I found it easier to be busy and around a lot of people - which is not the norm for me. 

Praying so hard for everyone - and I hope we all get to see excellent news on here next week. 

Many hugs to everyone!

tekwriter

Nettie boy you nailed it for me.  I was trying to talk about that just yesterday.  The new normal, is exactly the phrase I was looking for.  This going through chemo right now, knowing the treatment plan, repeating the steps, being out of work, this is the new normal for now.  It is easier to deal with than all the waiting and testing. I will have to remember that phrase.  Thanks

slowloris

Well, Its the good news/bad news scenario. 

Bad news first. As I expected, many nodules showed up subcutaneously over the sternum area (8 of them) with 2 actually on the skin of my LEFT breast. There is some concern of possible deep node involvement as well, but it could be post surgery inflammation. (I think not). 

The good news is no organ involvement or distant mets. I was so worried bc I developed a slight cough and though it had gone to my lungs. So overall, I was relieved. I'm back on chemo - gemzar/carbo iv for atleast 3 rounds of 3wks each, then reevaluate.

I was told with my type of tnbc, I will probably be on chemo off and on for the rest of my life. I can live with that if we can confine it to the skin. I'll take what I can get, and appreciate each day I am here to be with my children and family.

It's been a long 18 mos. Nonstop treatment and surgeries, dx 3x with cancer, or maybe just never got rid of it to begin with. Thank you to all of you... I know I can come here with questions, fears, rants, and laughter without fear of being judged. Thank you all.

adagio

slow loris - so sorry to hear about the nodule involvement - that is definitely hard to deal with, but you sound so positive and I am very impressed by that.  Chemo is no piece of cake - I wish you well - will you lose your hair again?

Titan

Just got done reading  "That's why I'm here"...the Chris and Stefanie Spielman story.   Chris Spielman was a football player for Ohio State and the Detroit Lions and Buffalo, New York.  His wife, Stefanie was diagnosed with bc at age 31 (not tn)...because she took herceptin.  She was diagnosed 5 times in 11 years,   She had 2 kids after the first diagnosis..... it was a hard read for me...wasn't sure I wanted to read it but I really couldn't stop reading once I made the decision..   Alot of it was about football but alot about Stefanie and what she went through and how she handled 4 kids.  She was very public about her experiences and raised so much $$ for cancer research because she could....since her and her husband were in the limelight.  not sure why I'm posting this really....like I said it is a hard read because of mine (ours) experience with bc....but I still felt uplifted reading it...

well..anyway..hang in there Lori....really sucks...and hoping treatments work for you so you really don't have to be in treatment forever...

Cocker_Spaniel

JIanchi I'm so hoping you are not positive for the test.  When I had mine done because my mum had ovarian cancer and my grandma had left breast cancer the same as me, it came back inconclusive - whatever that means.  My BS said ask for it to be done again. But quite frankly I am sick of waiting for results and all the wondering and hoping.  I just think if It comes back, it comes back and I'll deal with it then but really that is because I am burying my head and just don't want anymore worry. Fingers crossed tightly for you.

Slowloris Im so sorry it's bad news but good news no organ involvement or distant mets.  Many prayers and hugs to you and hoping they find that one chemo that will knock back this cancer once and for all.    Thinking of you heaps.  

Nettie don't apologise.  We are all here to rant about this F cancer.  Would some physiotherapy help you at all.  

All you ladies wondering about your new normal I wonder if there really is one.  As I get older and will get older people's aches and pains am I always going to be on cancer alert.  It's bad enough now that I can't go a day without looking in the mirror to see if anything is there or feeling for any new lumps.  Will there ever be a new normal for me or am I always going to be wondering and dealing with anxiety.

Have a good day ladies.  I'm going to go looking for my new normal.

Jianchi

Cocker: hugs to you.  I appreciate your positive thoughts for my genetic test result.  I am thinking about MX as I want myself to be prepared for all kinds of possibilities.  I look at my lumpectomy spot, which is very close to the chest wall,  I don't even think MX goes that high.  Anyway, I will talk to my BS and get a second opinion when the genetic result is out.  I can totally understand you worry about not get your normal life back.  Me too.

Slowloris: sorry about the bad news. sending positive thoughts to your way.

Titan

hmmm...new normal...i think I may have found mine...I hope...weird stuff but no matter what happens to us personally life moves on...our kids grow up, weddings, grandkids, job changes, our parents get old, we get older...and the bc hopefully becomes something that is put in a box and put away on a shelf and you just don't look in it anymore....the onc appts and mammos become something that we put on our calendar and go to and forget about it....OR if this doesn't happen and we have to continue with this fc then we do..and we come here and talk about it....

I used to walk around with a bag of spinach....haven't done that in awhile...after a few years out I have a hard time keeping myself on track....with diet and exercise...I run because I like it..not because I'm trying to prevent a reocurrence....I just wish though...i could be that happy goofy person I used to be...I'm trying....very very hard to be that person again

tekwriter

Sloloris I am so sorry about your diagnosis.  Not what I was hoping for. But you have a plan. Hope they find something that realllllly kick's it's but this time.

ALHusband

Well here's some kinda sorta good news! Kathy has now completed what, God willing, is her LAST surgery on Friday. Exchange surgery. All seems to have gone well. PS had to do some fairly extensive work on one side...so she's hurtin for certain on that side...but nothing like prior surgeries. He also took a squamous cell carcinoma in situ off of her upper lip, just under her nose, while she was under. But now, after a year which included spinal fusion (unrelated to the BC), lumpectomy, mastectomy, hysterectomy, oophorectomy, exchange surgery...hopefully she can turn in her frequent flyer card at the O.R. Woo hoo!

Jianchi

alhusband: all the best to your wife's recovery from the surgery!

JAN69

alhusband  Woo Hoo is right!  Blessings to you both.

InspiredbyDolce

SlowLoris: Well, no words can express how I feel to get your news - although as you said, it's a relief to hear that it has not gone to the organs.  The fact that you can do chemo off and on may be just what you need to get you to the point where they have a targeted therapy for TNBC and hopefully one day in the near future can keep this away forever for you.  You are so strong, and you do seem to have such a positive attitude!  We'll definitely be here for you - keep doing what you are doing and have faith.  Let's pray your good news can turn into excellent news in time!  Think of you and sending you a big hug!  xoxo

InspiredbyDolce

AlHusband:  Congrats to your wife - relinquish the card!

slowloris

Thank you all for the good wishes. 2 days out from 1st tx and I feel normal. No loss of taste. no nausea, just slight tiredness. i don't know if a cumulative effect will occur with each subsequent dose, but so far, so good.

AlHusband, So glad to hear that your wife may be done with all of her surgeries. I think a wonderful relaxing vacation is what you need this summer. (I'm partial to the beach).

I know what many of you mean by trying to find your "new normal". With ending my work career, dealing with constant dr appts, missing my MIL who passed in march, and worrying about my mom who had a heart attack in Dec, I'm not sure what normal is anymore. I'm sure I'll settle into a routine, and I think that is what we ALL probably need... a routine, a plan. Hopefully everyday stuff will keep our minds occupied and the new normal will appear. I wish this for everyone, when days can go by and bc is not thought of at all.

BanR

slowloris: I will only look at the good part and that is there is no distant mets. Your tumor looks like a lazy one. I see that you got diagnosed thrice at stage 3. So your tumor is maintaining a consistent status.

My onco mentioned about a woman who has been on chemo since the past 6 years. So then as we are talking about a "new normal"  here, a life without hair and being sick 5 to 10 days a month, because of chemo is her new normal. 

All I realize, post this diagnosis of mine, is that, we humans are very flexible. We can adjust to almost anything.

Curlylocks

Slowloris, I am sorry that you are having to face this beast way too many times in such a short period of time.  Cancer sucks!  Hope you dont have to many side effects from this current round of chemo.

Michele

LPBoston

I just want to thank everyone who started this discussion board.  I see no one holds anything back both positive and negative.  Sometimes I feel I just want to vent but I don't want to discourage others who are new to cancer and I want them to keep a positive attitude to get them through it and I don't want to bring them down.  I don't feel so alone anymore and I just love the fact that you all say "the new normal" - I've been saying that since last year and thought I was the only one who understood what it actually meant. Thank you!

LPBoston

Has anyone been on Taxotere?  I was allergic to it but had to take it anyways so they desensitized me to it and I was told this is the only type of chemo treatment for my TNBC and if my cancer comes back there is nothing they can do. I had another type of chemo 8 years ago.  Is having two types of chemo all they can give you? 

Curlylocks

LP Boston, no worries new warriors or seasoned warriors we are all in this mess together.  Having done the dance before, makes it even pisser and harder the second time around.  I get that being a 2nd timer at this game!

I have been on Taxol for my first bc in 2005 and did OKAY on it. 

Here is something I found on chemotheraphy drugs used for TNBC:

"Xeloda (capecitabine) and platinum drugs, among many others, are often
used for relapsed disease. Platinum-based chemotherapy drugs, such as
cisplatin and carboplatin, are also proving highly effective for a
subset of patients with TNBC whose tumors carry a mutation in the DNA
repair gene BRCA1. More than 75 percent of these tumors are TNBC. “These
tumors have a defect in their ability to repair damaged DNA,” explains
Kent Osborne, director of the Smith Breast Center at Baylor College of
Medicine in Houston. As such, he goes on to say, they respond better to
DNA-damaging agents, such as platinum drugs, than to other TNBC tumors".

It also talked about the taxanes being used which is Taxol and Taxotere.

I finally have my oncologist appt on Jan 29/14, next Wednesday...so want to get this show on the road...not really but dont want to give this beast a chance to do anything!

Michele

belleeast

LPBoston,if it comes back,I would seriously think about switching Drs. There are different chemos out there,they can use! 

Also,don't worry about venting. This is a safe place to do so! Everybody has their days when we just need to let it out! (((Hugs)))

InspiredbyDolce

LPBoston - There is a manual on the internet called NCCN Guidelines for Treatment of Cancer by Sites or it may be called the NCCN Guidelines for Physicians.  Here is the link.  http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#breast  You do have to scroll down to the correct section (Physician's) and then select the type of cancer (Breast).  If you download this (it is about 250+ pages of schematics and medical terminology) you can track the specific type of bc you have, with various information about your path report and it will show you in that the preferred chemo treatment, other chemo treatment, etc.  The chemo groups were divided into what I think were 1st tier recommendations and then supporting tier recommendations.  I remember it listing a lot of chemo variations and multiple combinations of various types of chemo medications. 

Maybe what your Onc meant was that if it returned he wouldn't be able to aim for a cure but for disease management instead? I agree with Belle - it's unusual to hear an Onc say that there is nothing they can do - but then again, he may not have elaborated on what he meant, and so there could be a lot of meaning behind that small mention of his.  Maybe he was meaning if it came back to distant organs versus a local recurrence?  I think I would drive right down there and ask him for clarification.  I wouldn't even call - I would do a 'pop-in' and tell the Nurse that you wanted to see the Onc for a quick second to get clarification on something.  You might not feel comfortable doing that - but that's how I've handled a few things with my Onc - back when he and I were still getting to know each other.   

InspiredbyDolce

Regarding the new normal - it is a process to discover life again after bc treatment and to emerge again into a typical daily routine or lifestyle, one that you had before bc.  With the exception of the new normal (diet, nutrition and exercise) this is how I was able to make the leap forward into carrying on with life. 

• Well, for starters, worrying about recurrence risk was pretty exhausting for me - it consumed me.  I was able to significantly tone that down and transition by keeping very positive information close at hand, saved on my web browser to refer to any time I needed some positive medical information. 
• I also started acting like a survivor.  For me, that involved remembering how I lived before I had my bc diagnosis at the end of 2011.  It would have been a terrible year if the entire year I worried about getting bc in Dec (before I knew I had it).  I decided to live again like that rather than live with the idea the something 'might' happen. 
• I started seeing my opportunities.  Example: instead of seeing a workout like a chore, I started to view it as an opportunity.
• Then to execute this new attitude, I had to do what I call "fake it until you make it."  That for me meant every day just going about living as if nothing is going to happen.  Things like, lining up goals again, saving into the 401k, shopping for a new credit card, replacing old car, etc ... whatever it was, it meant just going back to standard operating procedures in life.  It meant creating and sticking to a schedule again, just like before.  Sure, there are few additions to the daily routine now - but faking the routine until it became a habit was huge.  Before long, I woke up and bc was no longer the first thing on my mind.  In fact, I could go a few days without thinking about it and was no longer doing actions solely because of the worry.  Making my kale smoothie went from making the kale smoothie because I need to have vegetables for optimum health, became just making a kale smoothie.  Little by little the presence of bc as part of the daily routine subsided and the reality of living a happy and full life started to return. 
• I also continually referred back to what my Oncologist has shared with me and learned to put this in his hands.  He is responsible for making sure I succeed and I'm entrusting that he is monitoring me closely.  I shifted some of the responsibility of my survivorship back to him.  He is the expert and I needed to support him more that he is the expert. 
• I also got on Metformin.  Once I was able to get on that (thanks to several women here at bc.org) I felt like I had gained some control (if you are a Type A personality you might understand me when I say that). It's kind of like the placebo effect - beneficial effects that may not be directly correlated to the drug but tied to the belief that the drug is helping.  For my psyche this was a big win.
• I added Vitamin B12 supplements - or a B-Complex - it can help to ward off depression because B vitamins play a role in chemicals that affect our mood

It's also noteworthy to mention here, that this was not a process without much attempt -- there were several times during the transition where I was anything but the example above.  However on those off days, I would just let myself give in to an off day, and tell myself "I will try again tomorrow."