Calling all TNs

TifJ

WOO HOO Stupidboob!!

Simple- I had a small bump on my back before chemo and during chemo it got bigger and bigger. I asked my husband to look at it and he pushed on it a little and it exploded all over him- sorry, really gross I know!! Turned out to be a subaceous cyst. Hope yours is nothing special!

charusa

Congratulations Stupidboob!!! I am so very happy for you....

simplelife4real

Tekrwriter, I don't know why some people do things like what your supervisor did.  My guess is that she somehow thought she was protecting you or your privacy....either that, or it is hard for her to accept what is going on with you.  I also believe that  many people that have never had breast cancer have no idea about the different kinds of BC and how treatment varies a lot depending on the type.  I know that I was really ignorant about all of that before my diagnosis and I was an RN.  

With most people, I don't try to explain how serious my cancer is, but there was one person in particular that I needed to get my point across that this cancer was really serious.  I just kept sending her info about Triple Negative BC and after a few weeks, she wrote me back saying "I get it".  I'm still not sure she does, but at least she might have a bit of a better understanding.  

Since you are starting AC in a little over a week, maybe you could just send your supervisor a link to the AC information. http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/AC.aspx

If she bothers to read the side effects, she might just get a clue.   You could also maybe send her a memo outlining your treatment plan with estimated dates for each phase of treatment.  Just a thought....

BTW, I'm sure there will be a January 2014 chemo support thread if there isn't one already.  It's for anyone starting chemo in January.  Those threads are a big help!  It's nice to know you are not the only one going through it.  I'm doing AC right now.  I had AC after 12 weeks of taxol neoadjuvant therapy so I was a little worn down going into my AC, but it has all been managable.  Everyone seems to react a little differently to it.  For me, I sleep a lot the first week after AC and start to pep back up during the second week.  I hope your treatments go well for you.  I know I actually felt better once treatment finally started.  It was all that waiting for test results etc that was so hard.  Once chemo started, I felt like I was moving in the right direction.

JAN69

Merry Christmas to All.  May we all have a joyful celebration and we all stay NED all year long.  Janice

jenjenl

Agreed.  Merry Christmas.  I'm ready for you 2014.

LanaM

Merry Christmas to all! 

simplelife4real

Merry Christmas to all my new sisters! 

 I'm the only girl in a family of three boys and I always wished I had a sister.  Last night, as I was going to bed on Christmas Eve I was feeling a  sorry for myself about having cancer.  Then, I realized that having breast cancer gave me a whole world full of sisters and my TNBC sisters are the most special ones to me.  

Thank you to the women who have gone before me on this journey and are here providing support and encouragement today.  May we each have a good day today however we chose to spend it.  May we also each take a moment to honor in our own way our sisters  that have passed on from this disease.  They have also taught us courage and grace.

My AC chemo side effects don't stop for Christmas.  This morning, I woke up with constipation and nausea!  First thing I did was get my antiemetic medicine, a glass of water with Miralax, and a cup of coffee (my constipation cure) and settled down to listen to pretty Christmas music and journal about all the things I'm grateful for today while I wait for everything to work.    

TifJ

Merry Christmas! May you all have a very special day!!

Lookingforward66

simplelife4real

Thank you for your comments. I have a sister but she is very disconnected. I feel the same as you. You are all my sisters. You understand my ups as well as downs. Thank you all for all your support this year. May we all continue out journey in health throughout next year!  Merry Christmas to all of you great Ladies & one gentleman may we all continue to flourish!!

Marsha

Gwenie56

Simplelife4real ~ I agree with the sister saying you posted, and I love ❤️ knowing I have all of you to share TNBC life with!  I read postings everyday and think/pray for each of you as my heart leads...it is good for me to know that someone else either knows what I've been through or is where I am at in my journey.  

When I was first diagnosed (2/24/12) my precious daughter and I were planning her wedding which was to take place in 2 months (5/5/12). I started off with the whirlwind testing and port placement/lymph node bx and then immediately A/C every other week.  I would be steroid high and rushed to do taste tests and look at flowers ~ then the low would hit and my girlfriend and daughter would drive me around (with blankets, pillows, water, throw up bucket and pills) for dress alterations and bridal showers.  All the while I was surrounded by kind, compassionate and helpful friends and family.  I had two worlds, BC World and Wedding World. Plus, I wanted my daughter's time to be special and not about me. The wedding was beautiful and at the reception they had placed a bed for me in the back room of Union Station (Dallas, Tx)!  I was able to enjoy the evening and even danced some.  She left for married life and I was left with saving my life. (What a fog I was in)  I went on to finish 3 more months of chemo treatment and a DMX followed with 35 radiation.  Whew was I glad 2012 was OVER! 

It is interesting because when treatment is over then most everyone thinks it's OVER...I went on to have several more surgeries to replace expanders with implants and then to take out a failed implant. (as well at follow up CT's)  As you all know there is no follow up meds for TN unless reoccurance.  So MO said to call her if Ihave pain or headache that lasts longer than 2 weeks.  My deflated breast is no prize and I'm setting up appt's to have opinions about what to do but am leaning heavily on going flat. I can't even imagine how to do this with kiddos still living at home.  You are my heros!! 

SO ALL OF THIS TO SAY:  You all are my group to process with and feel with.  I do so love and appreciate all your honesty and helpful encouraging words to each other.  It "feels" as if you're saying it to me and I have strength and more wisdom to live this physical battle with. Life does go on, it is just different and in some ways better because I'm more aware of others and more compassionate with their struggles. I know more of what NOT to say and how to listen. I ask more questions and give more hugs. 

God has shown me great favor in my life, even with the struggles of my TN, addiction in my family and the recent death of my brother, I trust and believe in His grace and timing.  Life is hard but God is good and I am looking forward to 2014 with family and my friends in person and on line here.  

Dancing hard here in Dallas!! xoxo, gwenie 

ALHusband

Ladies I'm sad to report that after being diagnosed, losing our beloved dog, going through a lumpectomy, chemo, a mastectomy and a combo oophorectomy/hysterectomy, fate has chosen to deal my bride yet another blow in 2013. Her dad passed away this week. My how proud I am of her strength. Life keeps knocking her down...BUT SHE GETS RIGHT BACK UP AGAIN. Wow, what a woman my wife Kathy is! Way more than I ever thought I deserved!

Stupidboob

A cute little Christmas poem for us ladies..........(ALHusband share with your wife)

Merry Christmas To My Female Friends


If I were ol' Santa, you know what I'd do
I'd dump silly gifts that are given to you
And deliver some things just inside your front door
Things you have lost, but treasured before.


I'd give you back all your maidenly vigor,
And to go along with it, a neat tiny figure.
Then restore the old color that once graced your hair
Before rinses and bleaches took residence there.


I'd bring back the shape with which you were gifted
So things now suspended need not be uplifted.
I'd draw in your tummy and smooth down your back
Till you'd be a dream in those tight fitting slacks.


I'd remove all your wrinkles and leave only one chin
So you wouldn't spend hours rubbing grease on your skin.
You'd never have flashes or queer dizzy spells,
And you wouldn't hear noises like ringing of bells.


No sore aching feet and no corns on your toes,
No searching for spectacles when they're right on your nose.
Not a shot would you take in your arm, hip or fanny,
From a doctor who thinks you're a nervous old granny.


You'd never have a headache, so no pills would you take.
And no heating pad needed since your muscles won't ache.
Yes, if I were Santa, you'd never look stupid,
You'd be a cute little chick with the romance of a cupid.


I'd give a lift to your heart when those wolves start to whistle,
And the joys of your heart would be light as a thistle.
But alas! I'm not Santa. I'm simply just me,
The matronest of matrons you ever did see.


I wish I could tell you all the symptoms I've got,
But I'm due at my doctor's for an estrogen shot.
Even though we've grown older, this wish is sincere,
Merry Christmas to you and a Happy New Year.


Save the Earth; it is the only planet with chocolate

Stupidboob

ALHusband your wife has had one hell of a year.   I understand as I lost two dogs and my daddy this year as well, went through Chemo (second times) and radiation.   I hope she has a better 2014

Gwenie56

Jenn ~ I am so sorry about all you're going through. You've had a long hard last 3 years. Sending hugs.

Al ~ Your wife is truly blessed having you to share life with. 

Stupidboob ~ I loved the poem, gave me a laugh. Thank you. 

gwenie 

Sugar77

Hi Ladies,

Popping in to say Merry Christmas.  I don't post often anymore but do check in from time to time and follow how you are all doing.  Four years ago to day I was bald for Christmas wearing a beany cap to keep my head warm.  Hope you all had a nice day.

simplelife4real

Jenn, I'm sorry you are having to deal with these recurrences.  That is a lot to deal with over the last three years.  It makes sense that you are sick of this disease at this point.

Sugar, congrats on your 4 years.  I just spent Christmas basically bald and wearing caps to keep my head warm.  

Al, my heart goes out to both your wife and you on the loss of her father.  That's particularly hard right before Christmas.  

Stupidboob, thanks for the fun poem!

Gwenie, let us know what you decide to do about surgery.    I'm struggling with the whole surgery decision right now.  My initial surgery will be in Feb. 2014 and I'm just trying to learn about all the different options and the pros and cons of everything.  I have an appointment with my surgeon on Jan.15th and I feel like the more I know, the more comfortable I will be with whatever decision I make.

Kay

Gwenie56

simplelife4real / Kay ~ I applaud you for discussing the different options and finding this board before making decisions.  I probably would have made the same choices I did in regards to getting expanders and at least trying the implants after radiation.  It looks like you and I followed the same track of treatment except I did the A/C first, 5 treatments every other week, then the Taxol for 12 weeks.  My BS and MO decided the best for me was DMX due to many hot spots in the other breast and TN being so aggressive. What are you thinking about having done?  

I have an appt. tomorrow with my MO to check on some irregular skin moles that have come up in the area where my lump was first found in my middle chest wall area. (could they be skin mets?)  I know that a good attitude and positive outlook is desired with pre/post recovery cancer healing so I am daily living in the moment and trying to enjoy every moment AND THEN I feel something that hasn't been there before...my mind starts racing and I have to get it checked.  On the rational side I argue with myself that I used to suntan and since I am fair toned it is probably sun damage and nothing to get all worked up about. My MO has told me to stay off the internet but I do come on here!!  Good information and fellowship. 

Still dancing ~ gwenie 

Kbuntain

I have a question. I am new to this site. I have completed my 4 rounds of AC and tomorrow will begin my 12 weekly rounds of Taxol. I have not noticed much change in the tumor size with AC. Just wondering if the taxol will shrink the tumor more than the AC did. Anyone with similar experience? 

Paintingmywaythru

Hi all you amazing women and husbands out here, I am popping over to wish everyone a Merry Christmas. I was diagnosed over 2 1/2 years ago and am here to say life continues, gets better and there will be merrier holidays, different and a new normal, but once active treatment is over life settles down. Love to you all. I used this site as my lifeline and know what a fabulous resource it is. Peace.

bak94

So sorry to hear of the hardships some of you are going through. Alhusband, your wife has been through so much, but fortunately she has you to lean on, what a blessing. I know that it is hard on the hubbies also. My hubby has been rock through all my crap, but I know it is hard on him. Make sure you do take some time for yourself, go get a massage, go fishing (if that is your thing) or whatever you like to do.

Stupidboob-you have been through so much as well, things have to get better, right? We deserve some good!

kbuntain-for some reason some respond much better to taxol, so you very well may be one of those people! There are also other chemos. Have you asked your doc about adding avastin? I had a complete response with ac followed by abraxane with avastin. I am not even sure if insurance will cover avastin anymore but it may be worth asking.

So, UGHHHHH!!!! I had my lumbar mri this morning. I am about to go into full panic attack waiting for results, which will probably be Monday because my doc is on vacation until then:(  I am not even sure if the mri I had will show cancer, because they did not do contrast with it. Does it have to have contrast to show cancer? I have mychart so I am wondering if the results will be posted there tomorrow?? Tech said results would be ready tomorrow, but I would have to wait for my doctor. When I had an xray the results were posted on mychart, so I am not sure. Oh, and as the tech was questioning me I remembered that my goat had knocked me down a while back and I landed on my left hip, so lets hope this pain is a goatie injury and not cancer!

Lookingforward66

hello all. 

Bak94. I can't take the contrast with my MRI's. Allergic to it. But it still showed my cancer quite well according to my BS. Hope that helps you. 

Those of you trying to decide on expanders/implants, I decided no. I have knowledge of too many friends & friends of friends that had to have repeated surgeries to fix/replace.  I was unable to think of going for that many surgeries. 

I am 67 & do yoga. I do not wear my fakes to class but do everywhere else. This is the new me. My husband is a gem as he doesn't care if they are gone.  He is just grateful I am still here. It is one year ago today that I had my surgery. Feeling pretty good & according to PET scan end of November....no cancer!!  

Thank you all for listening....to my good & bad days. Waiting for a shoe to fall is now the hardest part. So we just keep on. Doing our best. 

Marsha

ksmatthews

bak94 sending good, positive vibes!!!!

Nettie1964

congrats stupidboob,  Good news was a  great  Christmas  gift.

I'm still learning how to NOT  freak over every new ache or pain.

I'm hoping we all have a  great 2014#

Nettie1964

I  was also wondering if any of you  were told  triple  neg  but at the end  was told  slightly ER + (2%)  so now  they want me on  aromasin.  what a  blow for me.  still not sure what to do.

TifJ

Bak- Hoping it's just a goat injury!!

christina1961

Brenda, Hoping all is well with the MRI result.  My low back issues worsened after a fall a few years ago, so hoping it is nothing major, just irritation caused by the fall caused by your friend the goat!

Nettie, I tested 100% triple negative on biopsy and then when the mastectomy was done, the remaining tumor was found to be 5-10% ER positive, so I am on tamoxifen. I've been on it 2 years.  I have gained weight from it and have hot flashes but it is bearable, just not comfortable.

simplelife4real

Gwenie, I hope they are not skin mets.  I have a weird thing on my back that sprouted during my Taxol treatments.  I'm going to get my MO to look at it on Tuesday when I see her.  I looked on-line at skin mets just to see what they look like.  It seems like they can look different, so probably the way to tell is with a biopsy.  This thing on my back has got to go no matter what because it is in a wierd spot and hurts if I lean back in a hard-back wooden chair.  I was surprised to see you had 5 AC treatments instead of the usual 4.   Do you know why that was?  The reason that I ask, is that the AC really seems to be working for me.  If there is any residual tumor left on ultrasound after the 4th infusion, I wanted to ask my MO if she would give me a 5th one.  I know there is a life-time limit on the Adriamycin due to it's cardiotoxcity, but if it's working so well, I'd really like to try to get to pCR with it.

Kbuntain, everyone reacts differently to chemo, so what didn't work for me, might work for you.  It's also all cumulative, so maybe the AC weakened it and the Taxol will knock it out.  The good thing about neoadjuvant treatment is that if it is not working, they can make adjustments.  Without the primary tumor to measure, there is no way to tell.  Of course the down-side for people like us getting neoadjuvant therapy is that we have the tumor in there longer than if we had surgery first.  There are pros and cons to each form of treatment.

Bak, I hope it was the goat too!  I can't see my test results from MRI's and stuff on Vanderbilt's website until the doc releases them.  I'm guessing your system might be the same, but it sure doesn't hurt to look.

Marsha, congratulations on passing your one year surgery date.  I know that getting through those first 3 years are the most important.  You have one down, two to go!  Wishing you a  2014 complete with NED on all your tests.

Nettie, I would do everything possible to stay NED. 

Cristina, are you anywhere near Crossville, TN?  That's where I live.

Gwenie56

Kbuntain ~ I agree with simplelife4real about what works for some doesn't work for others.  My MO told me right from the start that she wanted the tumor to stay in my breast (if I could handle the anxiety) because that way she could tell if the chemo was working (A/C). She said some chemo can do nothing and some could even feed it. So my decision was to leave the tumor in. After 3 treatments I had an MRI and it showed the tumor had started shrinking.  I'm not sure when she would have changed the meds if tumor had not shrunk some. Ask your Oncologist what the plan is so you won't be anxious. By the time my treatment was over and I had my double MX they didn't find ANY cancer in the breast tissue.  The doc's in my case took me to the Hospital Board and asked for me to have the whole "shabang" with A/C, taxol, DMX and radiation. I heard that some thought it was overdone but I am thankful we threw the book at it!! 

Simplelife4real ~ I don't know why 5 was used but my MO had just gotten back from NY where she was learning more about TNBC and that was her recommendation. I LOVE 💕 her and trust her completely.  Today I went in for her to check my bumps on the chest area where my cancer was first felt and she assured me they were NOT mets and went through my aches and pains of post chemo bone aches, gave me some anxiety meds and heartburn meds then told me to go live life!  She also gave me a big hug and told the front office to refund my copay because I didn't really need to see her!  

Lookingforward66 ~ you inspire me with your picture (is that really you?) and I want to do that someday!!  Guess I better get my hiney up and about doing something besides walking. 

I have a heart echo next week just to make sure I am okay to start back on my adderall and going to the gym. I'm just so confused with my chemo brain and slow as all get out.  I need 2014 to be more focused and active. 

Thanks for listening, gwenie

placid44

Kbuntain,

For me, taxol shrunk the tumor more than the AC.  I still had some residual tumor at the very end, but it shrunk abou 77 percent.

Lookingforward66

Yes Gwenie56 that picture is me. It was taken this summer. I had to stop chemo because of allergies. I am one of the few that can't take it. In just the two DD AC treatments I had, after the second I bottomed out. WBC below 400, almost no platelets & VERY low blood pressure.  Admitted via emergency to hospital in critical condition. Put in isolation. 

After that & many discussions with my doctors --- I stopped. 

I am still recuperating very slowly. My B12 levels are low & take pills for that. Otherwise blood good so far. Exhaustion is my biggest problem. 

I returned to my yoga class in July & that picture was taken I think in August. I had, previous to being diagnosed, been doing yoga for over two years. I love it. I go slow. Some days better than others. Getting stronger & according to BS it is really helping my arm/shoulder range of movement. 

In yoga at the end of a session we say

Namaste

Marsha