Calling all TNs

MBJ

mccrimmon:  I went to all sorts of support groups while undergoing chemo (they were at the hospital where I was getting treated so it was easy) and the age range was from 21 yo to 70 yo.  It was great to be able to attend these and I learned so much and gained lots of insite from going.  I agree with Heidi, though-it's your decision and only you know if you need this support or not. 

Jeanene:  You have found the best place to come for support!  Stay off of the regular internet-it can make you crazy!  Only come to threads on here that are supportive as some can be downright awful.  Surround yourself with only the people you love and who love you and that will include all of the courageous women here on this thread.  You are about to start a life changing journey but we will be here to support you through this challenging time.  Hugs!

MBJ

LMT:  We are all so different-Myself, I could not imagine waking up without breast, however,  I am very vain, love clothes, live in a (usually) hot climate and the thought of having to wear even more padding then I already did was just dismaying for me.  Reconstruction was a way to help me process all of the BC stuff and also end up with breasts that no longer needed padding to look like breasts.  Many women go without, some do recon later after they process all of this--it's a very personal decision and one that can be made later or not at all.  For me, having to wear a prosthetic would be more of a reminder then the scars that I have.  Best of luck with your decision and I recommend doing only what feels right to you.  Hugs!

ksmatthews

My dr's told me to stay off the internet unless it is this site or the american cancer society site.  Anybody can put stuff on the internet and it could be false.  So I have done just that.

Sorry to all the newbies, you can do this and you will be strong!

Susanhf

Hello ladies, I am new to this site and this board. I have TNBC and was dx a year ago in May. I had A/C and Taxol prior to my mastectomy. That was followed by 30 radiation treatments. Since I can't figure out how to put the dx on the bottom of the screen, I'll just tell you I was Stage 3B with extensive node involvement. I never had a lump. The ONLY thing wrong was a slight pink area on  my breast. How scary is that? I am 62 years old. There is no cancer history in my family. The ugly news is that less than 2 months after my radiation, I developed a rashlike area on my chest where the mastectomy was. Five doctor saw it, and I had a PET scan, and no one thought it had anything to do with cancer. My Onco saw me and sent me to have a punch biopsy, which concluded that I now have an "inflammatory recurrence." That means my skin has breast cancer--like IBC. I also have three nodes on my left (the healthy) side. These have tested positive for cancer.

I am now on Xeloda, and the purple-redness has faded considerably, making the doc and me happy. I am seeking a second opinion at Fox Chase in Philly with a doc who specializes in IBC. My breast specialist, a derm doc and my Onco all said my skin did not present as typical inflammatory BC. They even took pics to show to other docs.

I could really use some words of wisdom from anyone.I go to a group here in town, but I feel like I need more from people who might undertand my situation. I want to live, and I want to be as healthy as I can be. I know I am older than many on this board, and if you have any suggestions on anything that can make my situation more tolerable, please let me know. 

BTW Xeloda has had few side effects, and I get to keep my hair!

Thanks in advance.

jeanena

thank you all SO much for your supportive words. they really mean alot!!! I am so happy to have found so many "sisters" and it helps imeasurably not to be alone. I love you all! I know that I can do this!!  can't wait for my surgery to be over!!! I am so happy to see so many positive results from all of you!  hugs to you all!

MBJ

Susanhf:  There are women of all ages on here, not just younger women!  I do not know much about IBC but maybe there are others on here who will come on here.  I imagine there must be a thread for IBC specifically, too.  This is a great place for support for TNBC and I am so glad you found your way here.  It's sounds like you have great dr's who are familiar with IBC, which, from what I hear, is very important.  Glad the Xeloda is working and you get to keep your hair!!!

lrr4993

Susanhf - sent you a private message.

Titan

Susanhf..you are not older at all..isn't 62 the new 42???  .there are several women over 60 with TN..and several in their 50's like myself..unfortunately triple negative hits all ages...yes..mostly younger women...but there are a bunch of us older (over 50) here also...don't worry about it..we all just kinda hang together...even though we are at different points of our lives.

Welcome to this TN thread...

OBXK

LMT - I am 50, and have decided to be a "flat top". I will go back to have my "dog ears" removed, but no other reconstruction. After having a great pair of boobs, it surprised me, how much

I like my new look. And not wearing a bra - heaven.

Maria_Malta

Susanhf,  I'm not much younger than you (56)and like LMT should be having surgery some time in the summer after my neo adjuvant chemo ends on 12th August (if all goes according to schedule!).. while my onc and bs want to discuss whether lump/mx closer to the date, depending on how far tumour has shrunk, I'm pretty sure I'll be going for a dbl mx to minimise recurrance, and like LMT, am not planning to have reconstructive surgery... at least not to start with..Have spent all my life with large breasts (nice when young, much less attractive when droopy!!), and am actually looking forward to the freedom of not having to find the ideal bra, and like OBXK going for a new look...the boyish rather than the femme fatale!

Good luck to you all, especially Jeanena for yr sugery on Wednesday.

Can anyone tell me how to input my med details for them to appear at the bottom of each post like the rest of you have done so I don't have to keep repeating these details?Thanks

ksmatthews

under your home, edit my diagnosis and save info

Luah

lynn18: yes I would recommend St. Lucia and will PM you.

aryanna505

I was diagnosed on May 10th, they thought it was just TNT size 1.5 cm with no lymph node involement. While waiting for my second opion with a breast specialist my breast began to swell and redden. The time frame was only 15 days before I saw the second opion.

The day of my appt. the doctor called me and told me I needed to come right down because the breast MRI I had done 4 days before showed 2 tumors in the right breast. I was shaking and shocked! When I got to the hospital they took me right to mamo and then to sonogram where the radiologist lead sonographer and doctor (that I hadn't meet yet) where waiting for me. They gave me a sonogram on the right side that showed two tiny tumors. When the doctor saw my left breast she said to my that't inflammatory. I said 15 days ago it didn't look like this! She said that's a stage 3C!!! I almost fainted I said should I pack my bags? and she said for what? It's treatable. I also had a biopsy on a lymph node above my left clavical that came back positive for cancer so they staged me a IV.

My CT scan came back no major organs involed. I told the Oncologist I don't want to here any more bad news just treat me.

I started 4 rounds of chemo on June 2nd. my last will be Sept.8 then double mastectomy,then radiation.

I believe that God is the only one that knows your path in life! and I am a strong believer in Jesus Christ, Iv'e prayed for strength in getting me through my chemo with less side effects and he has.

GOD BLESS ALL OF US TRIPLE NEGATIVE,INFLAMMATORY BREAST CANCER FIGHTERS!

katfinn

For Paintingmywaythru:  Yes, we have a very similar diagnosis.  I must tell you that T/C was not nearly as bad as I anticipated.  The steroid really kept me going for the first 3 days so I worked (I was really wired for the first treatment).  I had chemo on Fridays twice.  I worked that day in the AM and took the afternoon off for the chemo (but I think I could have done the reverse with no problem too).  You will probably get your shot on Monday.  You can work that day and schedule the shot as late as possible.  I would plan on taking Tues. -  Thursday off for that first treatment since you don't know what to expect.  For that reason, I wanted to change my chemo day to another day but my onc wanted me to schedule it on "his" day at the center.  I can tell you that I actually felt better after my second treatment but I think it may be because I took Monday off too and got more sleep.

Sleep was/is a big problem for me.  I used Ambien  (the doc only gave me the 4 hour pill at first but then let me have the "time release" pill that lets you sleep for 7-8 hours).  I see that many women here use Ativan which may work better.  I try to go without any pills for the last week but it's hard to get to sleep when you  know you need it in order to function properly at work.  It's easier when I  know I can sleep in and not wake up at 6:30 (although once you have your wig, it cuts down on your "prep" time)  

I am wondering if my 4th and final treatment will be the toughest as I have to say that the fatigue latest longer for this 3rd treatment.  I still only took 3 days off but I was pretty tired through the next week.  But honestly, it's really not that bad.  I  totally forget about the cancer while working (except that I did end up telling everyone and they are very supportive - school).  I have been very positive through the whole thing but of course, I'm only Stage 1 with no lymph nodes so I feel very fortunate. 

You will get "metal mouth" and possibly "thrush", you'll lose your taste buds but I still have an appetite.  I used to work out and run but it's hard to get that in when you work and are tired.  I did some yoga today and worked out in the yard for hours.  I had some bone pain after the first shot but I would take Aleve before I went in for the shot and didn't feel a thing for the 2nd and 3rd treatments. 

I wish you the best and hope you find a wig that is close to your own hair.  I bought an expensive one but like my $49 wig that I ordered from Paula Young.com the best.  I ordered 8 and sent 7 back (only cost me $8 extra to send  them all back). 

McCrimmon321:  I used this site as my "support group".  I am much more into the medical side of my diagnosis than the emotional side. Maybe I'll need more help with time but right now I just want to learn all I can to make sure I'm making good decisions. 

Paintingmywaythru

Katfinn- thank you so much. This is very useful. Do you think you could have worked Tues through THursday or were you so washed out you needed tos tay in bed...

I was thinking of taking Monday off with my Friday treatments but I will play it by ear and do  what I need to. I guess my clients will figure out what is going on..I am a therapist seeing individuals and couples. I should probably see if I can make it Wednesday and then I would work Thursday and Friday and rest Sat/Sun/Mon....anyway. I too am there Friday because it is hen the oncologist is there. Your words and info are very very comforting.

I expect life will feel very unsettled but I am trying to focus on our daughters wedding in 13 days.

I go to the radiation oncologist tomorrow. Do you know if radiation does anything to increase you statistics? Well I will find out soon enough. I truly appreciate your info. It sort of gives me an outline for my post treatmetn week.

Thank you.

TexasKaren

Rella:  You are right, as long as we are ALIVE there is hope, and we fight and do what we have to do!  I am a long time member of breastcancer.org, but there is also a great support site:  www.tnbcfoundation.org.  They are all about triple negatives, and have great discussion forums too.  Yes, there are several on there who are 9 or even 12 years out... You are all my heroes!!  My orig. dx was in 2007, and my recurrence with bone mets this past December.  I am doing whatever I can and will continue to fight as well, but know that it's all in God's hands, and his will is my will. 

OBXK

Aryanna, Wow, things moved so fast, your head must be spinning! The good news is, in my opinion, surgery is a cake walk, compared to chemo. Before you know it, the holidays will be here, and all of this will be behind you.

Wishing you well, Karen

OBXK

My ca 27.29 was normal when I started treatment, but has been rising. I go to have it checked again tomorrow. I know enough about tumor markers, not to let it scare me, yet it does. Hope I get the results by Wed. It's hard to get back into living scan to scan, after having a few years reprive.

Fingers crossed...

Suze35

Aryanna - that is scary, but I'm glad you started treatment so quickly! Just so you know, supraclavicular nodes are no longer considered Stage IV, and are treatable. I had two myself (treated with radiation) and my doctors are still hopeful I'll do well. No organ involvement as of yet!

Maria_Malta

thanks ksmatthews I must be blind

Anonymous

This guy takes great pics...

Suze35

Heidi - I want to be on that beach, watching that wave hit, holding an ice cold glass of dry chardonnay...sigh.  You have the best photos.

Suze35

OBXK - from what my chemo brain can remember, tumor markers can rise during/just after treatment because as your tumor dies, it distributes dead cancer cells in your blood, which are picked up by the blood test.  So hang on to that thought!!

Luah

Amazing photo, Heidi!

Ladies, I just had to post a link to a story in our local paper this morning. When I'm feeling down I'm going to think of this little girl and her family and their journey with cancer. Hope it has a bright ending:  http://www.theglobeandmail.com/news/national/toronto/from-a-child-with-cancer-a-lesson-in-living/article2067054/

Fighter_34

Heidi darn he DOES!!!!

Checking in surgery went great I feel back to normal. Just exercising and taking it easy. Hope all is well with everyone.

MBJ

Fighter:  Heal up and be well!

Heidi:  That picture is just gorgeous! 

Aryanna:  Wow, your head must be spinning but thank goodness you have started treatment.  I had adjuvent chemo prior to MX and I did really well.  I wish the same for you!  Big hugs!

OBXK:  I hope you get an all clear on your scans!  I really hate waiting.  Hugs!

kittycat

Painting - I also worked through chemo.  My first rounds were AC every other week.  I had chemo on Wednesday and would start to feel bad by Friday afternoon.  I would spend all weekend in bed and would start to feel a bit better by Monday or Tuesday.  When I had Taxol every week for 12 rounds, I would also do them on Wednesdays.  This chemo was much more doable.  My counts stayed higher and I had a better quality of life.  I would rest on the weekends, but could pretty much work throughout the week including the days I had chemo.  I'm a sales rep and travel.  I was actually able to travel and see customers a couple times while on Taxol.  Good luck and PM me if you have any questions. 

TifJ

Fighter_34- PM me if you have a chance and let me know how your exchange went. Mine is next Tuesday!! Glad to hear you are doing well!

MBJ

For those of you following my temperature reset: I found out that my taking Melatonin for sleeping the last year and a half was interfering with me being able to get my daytime temperature up. Even using the pills didn't work until I quit doing melatonin. I am now starting over, without the pills, and I have found my hot flashes at night are now non-existant (though I went through 4 nights of withdrawel and hopefully I am done) I am now trying to manually, without the pills, keep my temp up. I purchased an inexpensive space heater by DeLonghi called SafeHeat and my routine is to get up, have a strong cup of coffee, eat something with high fat content to give me lasting energy, get into a hot shower to get my temp up and then I plop myself down in front of the space heater to keep me at an approximate temperature of 98.6 F. The idea is to build up your ability to hold at 98.6 F for an entire day. If you can do this your body should naturally fight off any future cancers, by dressing slightly warmer then usual (stay away from A/C during the reset period), after two weeks your body should rest itself naturally. By taking your temp periodically during this time you will learn to be able to tell when you are at the proper temp. My right foot with plantar fasciitis aches and my thumbs hurt when my temp is below 98.4 so I use this as my redf flag that I need to bring my temp up. If you are able to finally keep your temp up during the day, you will also sleep better at night.

Susanhf

Thanks all for the welcome. We are all in this rocking boat together. I just learned that the nodes under the left arm, where a breast still lives, are triple neg, too. Am going to Fox Chase for IBC doc  to check me out. I am happy with my present docs, but want another look. BTW, I am stage IV. But there is no organ involvement, just skin and new nodes. Fingers crossed that Xeloda holds things at bay. You people are great!!