Calling all TNs

simplelife4real

Sly, I like what you are doing with the photographs.  I love the thread here A Retreat for Peaceful Contemplation .  It's all just beautiful pictures, no talking.  I've never posted there, but I enjoy going and looking at the  pictures.  Have you seen it?

slv58

Simplelife4, thank you! I have not seen it but am going to check it out (right after lunch!) I've been on here over a year and didn't know about it, so a big thank you! 

journey4life

Yes Maggie - I think you're considered an "oldie" !!!

Allydp

Hi ladies, for those that asked about my genetic results, they just came in this morning. I'm BRCA2+. I don't know if this is naive of me, but I see this as a blessing in disguise. Mostly because I feel a sense of closure with the nagging "why me's." But also because I feel like doctors know how to handle these gene mutations, and hopefully I'm getting this cancer out of the way while I'm young and healthy, since I was bound to get it anyway. 

As I mentioned before, my hubby and I struggled with infertility for years before my diagnosis. Without going into my whole life saga, we've decided to build our family through embryos adoption. I'm so grateful to have grieved the loss of biological child before cancer. I feel like God packaged this up as nicely as he could for me. My heart goes out to the ladies who have to cope with all that on top of everything else. No questions, I will definitely have my tubes and ovaries out ASAP. Given the fact that I've already undergone IVF twice, already puts me at a higher risk for ovarian cancer, so to me there's no time to mess around.  

Do any of you have any good literature on BRCA+? I'm looking to find articles for both myself and articles that I can send to my family. I plan to send a detailed email to everyone letting them know my status and what it means for them. I'd also like to recommend they see their doctors and I'm hoping that isn't overstepping my bounds. This email will go to mostly males, but I still hope they take it seriously since the BRCA2 mutation has higher risks for the male breast cancer. Thanks.

Stupidboob

Inspired:  We have the green one was well, but these are "supposed" to be free of BPA and a lot of other chemicals.   They are white...

slv58

Allydp, I love your positive attitude and acceptance with everything you and your husband have been through. I'm sorry, but i don't  have any information. Just want to send hugs and cyber support.

Allydp

Thank you so much, Sly. I really appreciate that. Sending hugs and cyber support right back at ya!

KSteve

Titan and LRM216 - Congratulations to you both.  Five years out!  That has to feel good.  I'm 3-1/2 years out and feeling very good, with the exception of having to recently do surgery (latissimus dorsi flap on radiation side due to radiated skin failure).  Now I'm looking forward to getting this tissue expander out and new implants exchanged in a couple weeks.  I forgot how tight those suckers make your chest feel! Other than this little bump in the road, life is so good.  I feel so fortunate to be where I am right now with my health, especially when I read posts from our new TN sisters and those that are battling AGAIN.  My heart goes out to you all and I wish you the very best.  I don't post often but I do check in to see how everyone is doing.  I just feel so fortunate to be on this side of the cancer journey.  I do remember living in fear during the beginning of the whole process, and then the coping that happens while in treatment.  I also remember the fear coming back when finishing treatment.  Now I just live everyday, think about cancer much less, and make plans for my future.  To those of you early in treatment or just beginning this crazy ride, it will get better.  Cancer eventually won't consume every waking moment of your life. 

Feeling grateful,

Kathy

Allydp

Titan and LRM216 - let me congratulate you as well. 5 years is fantastic!!

KSteve - Thanks for your comments about this eventually not consuming every waking moment. I just said that to my husband this morning - that it's crazy just how much cancer consumes me and my thoughts. Not necessarily bad thoughts, just that constant fight mode mentality. I look forward to when I can say I'm past all that. Congrats to you as well on being 3 1/2 years out and I hope the rest of your recovery goes quickly and smoothly! 

InspiredbyDolce

Ally:  Please reach out to ALHusband - he posts on these boards periodically, and his wife is BRCA2+ as well.  He went through the whole process of finding this out, and then having to make some decisions with his wife on how best to go about things, etc and I believe he will have some excellent information for you because he did quite a bit of research.  He is super nice and has been a big help to us on this forum!

Gramof2boys

Hi girls, I don't post much on this thread but do read almost everyday. I had my LMX and ALND last Friday. BS surgeon called today and I had pathologic complete response, no cancer in breast or lymph nodes!!! Yeah! I did do neoadjuvant chemo and my last PET scan showed nothing in my breast or nodes. I would like to know if anyone had PCR and what is the rate of recurrence? I will just live for now, still need to do radiation then my recon surgery, but it just shows you that neoadjuvant chemo does work, at least it did for me! Please let me know of any articles or stats for recurrence rates, I will also talk with my MO and surgeon.

InspiredbyDolce

Gram - I can tell you that in the context of my conversation with my Onc, he said those who have a PCR "they know will do very well" - in reference to prognosis.  I'm not sure of any stats outlined specifically for 5 year survival rates based on response to chemo, but instead may have been analyzed based on other factors, such as stage of bc, if lymph node involvement, etc.  I do believe you have received the very best of news though and congrats on this result!  If I find any articles regarding PCR I will post on here for everyone. Again, so delighted to hear your news!!!

*Update* Here's an article I just located:

http://breastcasym.org/neoadjuvant-chemotherapy-tr...

Excerpt from article:  "Overall, patients with breast cancer who experience a pathologic complete response (pCR) with neoadjuvant chemotherapy (NACT) have significant improvements in both disease-free survival (HR 0.48, 95% CI: 0.37-0.63) and overall survival (HR 0.48, 95% CI: 0.33-0.69) compared with patients with residual invasive disease.4 In TNBC the contrast is particularly stark. The prognosis for patients who experience a pCR is excellent, with less than 10% developing a distant recurrence at 5 years, and equivalent to that for patients with other breast cancer subtypes who experience a pCR."

InspiredbyDolce

Hey everyone .... so we've been talking recently about recurrences, how many TNBC survivors there are, where are they ... etc.

I started looking through the start of the TNBC thread and can tell you that I've already found several survivors .... they may not be posting in this forum, but they are either checking their mail (as shown by log on date) or they have posted in other forums, such as forums having to do with reconstruction, helping others with those questions, etc.  Some look like they only post something every 3 - 6 months or longer in between their posts.

There are many TNBC survivors - I'm just listing a few various ones (profile name and mini info). No recurrence unless I specifically mention it. There were many more, I'm just trying to give a good variety of different scenarios. 

TNBC Survivors

NoniJones - 26 years survivor 1st dx of TNBC ... 2003 new primary TNBC (Both times No Chemo - 1st time radiation)

Phyl26749 - 17 year TNBC survivor (1st time age 42) new primary 2009.  

Meece - 11 year survivor! stage 1

PattyPoo53 - 10 year survivor!

Nordy - 9 year survivor!  She was dx'd in April 2005 with stage 2B 

CinnamonRocket - 9 year survivor! stage 3B

Gorialla12 - 9 year survivor! stage 1

HairSprayMom - 6.5 year survivor!  Dx 9/2007, 3b (with a 1cm and 2 cm tumor on the chest wall)

CRS319 - 5 year survivor and Mom is 11 year survivor!

SkiGirl - 5 year survivor - stage 3A

Morgan513 - 5 year survivor - stage 2A

FMAKJ - 5 year survivor (at 6/2014) - Stage 1 (No Chemo)

Scooter-12 - 5 year survivor - stage 2

MichelleS - 5 year survivor - stage 1

Karen3 - 4.5 year survivor (chemo withdrawn because tumor did not respond to 4 different ones)

Anyways, just wanted to post this here to give us all hope. There are many TNBC survivors, we just don't know about all of them. 

Hope this news is comforting and wishing everyone a peaceful day!

sylviaexmouthuk

Hello Titan

I just wanted to pop in
to offer congratulations from all of us in the UK on your reaching
five years. I know how important these anniversaries are. I also
wanted to say that I have now reached 8 years and 9 months exactly
today and I would hope that would be an encouragement to everyone. I
had a very large tumour and was given a poor prognosis, but here I
am. Back in 2005 I think we were really in the dark ages with triple
negative receptor status. I live normally most of the time but still
realise the possibility of the cancer coming back. I live a simple
lifestyle and rely mostly on a simple healthy diet and an active
lifestyle.

I certainly do not
think that I would be alive today if I had not gone through orthodox
medical treatment and had neoadjuvant chemotherapy, a mastectomy and
radiotherapy. At the moment I do not think there is anything else to
keep us alive and certainly not anything that we can take.

I do not know why some
of us get mets or other recurrence but it could be that the treatment
we get kills off the fast developing cells and would miss those lying
dormant which can suddenly be activated and start moving round the
body. Cancer is very complicated and with two hundred different types
I do not believe in a magic bullet.

All we can do is eat
healthily, get some exercise, try to avoid negative stress, and get
on with our lives.

Congratulations on your
thread.

Best wishes.

Sylvia

Allydp

InspiredbyDolce - I just sent ALHusband a message. Thanks so much!  Love the info you gathered on recurrence and survivors on this thread. Thanks for pulling that together!

KSteve

Allydp - When I look at your beautiful picture and "listen" to what you say in your posts, you've definitely got the right attitude.  You are in the fighter mode at this point of your journey and that is all consuming (as it should be).  You've educated yourself and are doing everything in your power to kick this monster to the curb.  It doesn't feel like it now, but gradually your mindset will change and you'll start thinking about your future instead of your "now".  Having said that, not a day goes by that breast cancer doesn't enter my mind in some way.  But it goes away quickly and is usually not a thought that is accompanied by dread or fear.  It is a part of me now, but not in a bad way.  On Sunday we had just come home from a wonderful weekend of snowmobiling and staying in a mountain cabin for the weekend with our kids (19 and 23) and some friends to see our neighbor being taken from his home by paramedics.  They were doing chest compressions while moving him to the ambulance.  My husband looked at me and our kids and said "And that is exactly why we live our lives to make as many wonderful memories with our family as possible.  None of us know when our time is up."  Unfortunately our neighbor did not survive so that was very sobering for all us.  I have a different perspective about life after having survived breast cancer but I feel grateful for that. 

Keep putting one foot in front of the other!

Hugs,

Kathy

Stupidboob

I love to see people come together like this...........I do not have but a couple friends and even those would not do this....:)  My cousin's sister did not shave her head but she cut her hair real short for her and she did not lose any of her hair.   I have to admit to you all that I do get jealous when I see the love people show.   (sniff sniff, little pity party)

http://www.local12.com/news/features/around-the-we...

gillyone

SB - I can understand how you like friends and family coming together to do something for her, but, I'm sorry, shaving their heads to show support does is not meaningful to me. Their hair will start growing back the very next day. They are healthy and are not going to lose pretty much every hair on their body, never mind eyebrows and lashes.  It is so different for those that lose their hair to chemo. You have to deal with worrying if it WILL grow back, the chemo curls, the color and eventually the totally new kind of hair you are left with. This was more for themselves than for her. Maybe they did a whole bunch of other stuff for her - cleaned her house, did her grocery shopping, made meals, went to chemo with her - but  to me, those are meaningful things.

Stupidboob

Gillyone I totally understand............I meant as a whole...........my hubby and I had to go it alone and it just warms my heart to see others have so many around them that care...........no matter how they show it.   I do agree it is totally different to just shave your head verses losing it.  My hubby said he would shave his, but I would not let him.  It was my fight, not his as far as hair went.....I was so glad he was with me through it all.

gillyone

got it

tekwriter

I found it heartwarming.  I have a college friend that goes to all my  chemo's and appointments with me and she makes it an adventure and fun.  I have a friend at work that keeps me updated on things and cheers me on.  I also get cards from my team and people that stop by on my caring bridge.  I feel blessed for each and every one and for you guys.

mags20487

back to the menopause topic....guess who is back?!?!?!?  Seriously...woke up with it today....craps and all.  It has been 6 months and BAM.  I hate this game

Maggie

FierceBluebird

Stoopidboob, I loved it!

I need all the ..warm fuzzies i can get right now and love to see things like that. I have two sisters and a daughter all who have long hair down to their waists. I would be upset if they shaved their heads! Lol!

simplelife4real

In terms of haircutting for support, I think I would have liked it had my husband shaved his, but he would have none of it at the time.  Now, that my hair is finally starting to grow back, I know deep down what a difference it is to lose it from chemo vs. shaving it.  Now, I see that it wouldn't have helped me much if he had shaved it, but it should helped me a LOT that he cooked many, many meals for me and took care of pretty much everything else as I was lying around too weak to do much of anything.  What he did (and continues to do) means the world to me.  

You all are my emotional support....no matter where I am in this journey, I feel like I can come here and write about it and you will understand and be supportive.  When fear starts to creep in and it does for me multiple times during the day at this point....I just tell myself "don't go there" and start listing all the things I have to be grateful.

KSteve, that exerience with your neighbor is such a reminder how important it is to seize the day.  I have several fun things planned today...I want to make the most of them.

Carpe diem!

Luah

When I started chemo, my 2 sons shaved my head, and my husband's... it was a bit of a family party... we have a photo of dh and I looking pretty cool in dark shades, bald. I think it helped take the grimness away from the act... and I do think it helped my dh feel better, making that show of support.... nothing wrong with that, the cancer journey was rough on him too. In the end, I think we all do whatever we can to get through the dark days and for some, having others around who are also bald is less lonely.  

FierceBluebird

I'm an "animal" person so last winter everyone was buying me those crazy animal hats for my bald head.  I would occasionally make the family wear them as well. 

I'm sure people thought we were cray! lol..

CatWhispurrer

LookingForward & Inspired - I think I first mentioned the meditation.  I am trying to learn.  I have been listening to a book on DVD called "Full Catastrophe Living" that teaches it for stress relief and living in the moment.  Very good.   I would like to do yoga too but haven't looked into classes if anyone has any good stuff to recommend, let me know.  I would like to know how you learned meditation too.  It is hard for me to tune everything out, especially with the phone ringing and my cats trying to walk over me LOL!

I finished all my tests this week for the clinical trial.  Still haven't gotten the HER2 results back and can't be in trial unless it is negative.   It was supposed to be done by Tuesday!   I am getting a port put in on Monday and start Chemo on Wednesday (I told them trial or no trial, I needed to start).

Cocker_Spaniel

Gilly, Simple, Stupidboobs

I think people feel they are supporting you when they shave their heads if you have cancer which is  a very nice thing for them to do  and it shows the sincerity of their support  but to me its unnecessary.  Yep Gilly,  if they offer to go shopping, cook you a meal,  or some other things around the house this helps and supports you so much more. My two daughters offered to shave of their hair but I said no there was no need for it as I knew they supported me 100% anyway and I didn't want them to ever be in a situation where they had to shave off their hair (because of cancer, support or for any other reason). My old feller hasn't got enough hair to shave off now but I really wouldn't want them to do it for me.  Just being there for me was enough as I felt very lonely with worrying about the surgery, chemo and everything else that went with the diagnosis because I tried to stay happy and cheerful for my family's sake as I know they worried about me but to know that they were there for me, my friends were supporting me and the support I got on here was marvellous. In the end the 'hair shaving' event turned into a happy occasion as I chose when it was to be done and we all got a tremendous  and much needed laugh out of it.

The biggest laugh I got was just before my hair was shaved my youngest daughter told her two children that I would lose my hair and maybe wear a wig so that they were prepared.   My little Ben (4 yrs then) stood in front of me for ages just looking at me (with the same head of hair he had seen on me all of his life) and whispered to his mum "Mummy is that Nana's real hair or a wig".   But it wasn't the "hair shaving" event that made me weepy it was my little Caitlin's (6yrs then) words that did that when they both stood before me and I said are you ready (for me to take off my hat) and Caitlin took one look and said "wow Nana you are so beautiful", that was what brought on the tears.

Cat I hope you manage to get your treatment started soon and that you qualify for the trial. Thinking of you every day and still deep in your pocket. 

It's Saturday ladies and I think gardening might be on the agenda with my old feller.  Have a good day. Sending hugs.    

Sugar77

CS - gardening...oh how nice.  We've had a really rough winter here in Canada this year and spring arrived yesterday.  Can't wait to see our flowers popping through the ground, which is still frozen.  Enjoy your Saturday.

Hi ladies, just popping in to say hello.  Hope you are doing well.  Take care!

bak94

Titan and LRM216 Congrats on the huge milestone! Thank you for still checking in and your continued support!

I just got the blood results from my 3 year check up-All good and in the normal range! She didn't see the need for any scans, already had the mri on my bad back. I am now on the 6 month schedule. I get my port out on April 1rst. If I can manage to lose some weight I may be able to do reconstruction, although I honestly don't know if I want to do more surgery, as my energy is still low. I would love to have reconstruction but not sure if I want to do what it takes to get there. well, I would love to lose weight.

Has anybody else had stage 3c or locally advanced triple neg that could not be removed surgically? I know gillyone had stage 3c and it is good to see you are doing so well! Anybody else? I know there are some stage 4 triple neg gals that have been ned for some time, they post on the stage 4 boards and wish they would come over here once in awhile. Even though my docs say I had a complete response and have an excellent prognoses now, I worry because of basically being stage 4, which doesn't that mean that it will most likely return? I forgot to ask my doctor. I guess most of us worry regardless of stage, but I sometimes do not know how to plan for the future, and still basically go day to day, hour to hour.

Cat-I am thinking of you and glad that you many options for treatments. My retired MO, who was deeply involved in research, really wanted me on Herceptin even though I was only +1 for her2, he saw great benefits. I will check out that book/dvd. Meditation really has helped me in the past but I also have not been able to get there lately. I had a dvd that had gentle yoga and then went into meditation. It was a great one, but I lost it and can not remember who it was! I know I got it at Costco years ago. Have your docs mentioned Avastin? do they give that to treat triple neg anymore?

Hi Cocker! Mags! KS! Sugar! Luah! StupidBoob! And hello to all of you lovely ladies!

Cocker-We adopted 3 indian runner ducks and they are adorable! So energetic already! Romi likes to follow them around, they get a bit worried but I am sure they will submit to his ways:) Someday I promise I will post photos!