Calling all TNs

Hey Gang,
 Wow am I behind.   I hope to get caught up but please do not beat me with a wet noodle, if I skip over something.   First I want to say I hope all is well and if I missed something extremely important someone will let me know.     Second have any of you heard of H-86 (I am reading on it now) someone Face booked me a message about it. 

A little catch up and forgive me if I repeat.  My colonoscopy and endoscopy had to be moved because they could not access a vein so I have to go to the hospital to have it done.  I wanted to do both the same day so I have to wait until there is not cramping (due to inflamed colon).  I should have it at the end of this month.  We shall see.    My brother had his surgery on February 14th and he came home for a few days and had a set back and went back in the hospital and then they sent him to a rehab and so he just got home Friday.   Depending on if the medicine can fix things he may or may not have to have a defibrillator put in. 

I go to see my oncologist the end of the month..............though not sure why............they don't do anything except examine me......

Journey no nothing from that gal who has gone AWOL.  She will probably tiptoe back in here shortly with all of her news and hopefully news of her casino wins. 

Titan - great news.  I have been waiting for March to come around cause I knew it was five years.  Now you are over the hill {{{just sayin}}} and can put this dreaded cancer further back in your mind.

Cat how are things going with you.  I'm sure the next lot of treatment will kick this to the kerb once and for all.  Big hugs.

Stupidboob good to see you posting.  Glad your brother is doing ok now.   You say you now have to have your gastro/colon in the hospital now.  Do you mean you wasn't going to have it in the hospital all along, surely not the doctors surgery.  Where else could you have it done. We always do ours in the hospital here.   

Have a good day ladies. Thinking of you all, going through treatment or not. Big hugs.

Has anyone heard from Curlylocks?  I know she was starting treatment in February.  I haven't seen her post in a while and am worried about her.  Thinking of you Curlylocks if you are out there!

thanks Cocker.............the gastro we use have their own center where they perform them.   A lot of the bigger places here are building their own centers.  

when I went to the ER a few weeks ago, they could not get a vein either, and so they sent in the artery specialist and she could not get it from an artery either, they could not get my port to work.  I think that was part to having it flushed and for some reason that time it swelled up some, I really think that the girl did not hit it correctly.  So, they kept at it until they got just enough to blood to run test (I mean a very little amount) and one shot of pain meds via IV and then they could not get it again.  Since, chemo I have gotten so much harder to access.  I told them at both places to take it from the feet, but for some reason no one likes to do that and most the time if it is done the doctors do it.  

STILL READING AND THANK ALL OF YOU. BRAIN NOT WORKING QUITE WELL YET, BUT USING ALL CAPS HELPS IF YOU DON' T MIND ME SHOUTING AT YOU. IT JUST TAKES SO LONG TO FIND THE KEYS OR PUNCTUATE SO THIS HELPS ME POST FASTER. GETTING STRONGER EVERYDAY AND WILL UPDATE YOU ALL AGAIN SOON. HUGS TO EVERYONE AND THANKS FOR ALL THE POSITIVE MESSAGES. LOVE AND HUGS TO THOSE WHO NEED EXTRA. AND HAVE THEIR OWN BATTLES RIGHT NOW.  WILL SEE DR ON WED AND HOPEFULLY HAVE A PLAN. GOT ALL THE TUMOR AND ALL SCANS CLEAR. HOORAY!

remembering Dawn (Inmate) also...

Hi All,

Hopping in as I knew our loyal leader Titan has hit the 5 year mark. Congratulations are in order. 

I also have been thinking of Suze, Dawn, MJ, Love Irving,  Laura and now Karen and  everyone else that Titan mentioned. We all   know what a tough battle this is.

I will be 3 years in October and so am not on here often but this site was my life-life in 2011. I want to thank you all for that.

Love to all.

Cat, I really hate hearing this news.  I was so hopeful that it would not be a recurrence.  There is a mets thread on the triple negative foundation.org website tnbcfoundation- dot - org. They discuss specific chemos and I think there is one woman on there who may have been on that same trial.  

I have just looked at the first article and am not impressed at all. Even the site it is from does not instill me with confidence - junk science indeed. I found the article very condescending, sarcastic and "fluff". Not a science article at all, and in my opinion, not worth reading. All the other articles are from canceractive which was mentioned in the first piece. I have to also say that I used to visit Sylvia's thread, as I am a Brit living in the US and left as I found myself questioning some of the information there, which was not appreciated. Sylvia is a very nice lady with excellent intentions, but, for me, the thread was a bit too alternative. But if that's what you like - it's a great place to visit.

Inspired - thanks for caring about us to share the information.

Hi everyone, I just love this thread! 

I'm 33 years old and was also diagnosed at the age of 33. Triple negative, IDC, 2.4 cm, stage IIa, grade 3, node negative. I found a hardening 3 months prior, but thought I'd keep an eye on it as I've always had fibrous breasts. Even had a clear mammogram in 2012 after finding a suspicious lump. Thanksgiving, Christmas and New Years all passed and time slipped away from me. By the time I felt it again in January, there was a definite lump and it felt very different from anything I'd had in the past…deep, against the chest wall, firm, immovable, etc. 

Hubby and I had done two IVF's in 2013 in hopes of conceiving our first baby, so I was sure it was ER+ or PR+, but low and behold, it came back triple negative and had nothing to do with any of the fertility drugs I took. (Although I can't shake the feeling there's still a connection!) 

My onc originally suggested neo adjuvant TC for chemo, but after much research and several opinions from onc's at Sloan Kettering, I decided to go with the big guns and do ACT - ACx4, Tx12. I'm an all or nothing person, so this route made the most sense to me. Still went the neo adjuvant route since I could start chemo sooner than surgery. I just couldn't sit around doing nothing any longer! I'm a week into round 2 and despite a few symptoms creeping up, I feel good. I've decided to go with a BMX with expander/implant reconstruction, which is happening in August. I'd love to do the DIEP, but I'm intent on carrying a child after I beat this thing and was also told I was too thin…although after this chemo, that might change. Grr. 

I'm waiting on results of genetic testing, but the counselor gave me a 66% chance of carrying the BRCA gene. My paternal aunt was diagnosed triple negative in her early 40's, after having 3 children. She had a recurrence in her 50's, but is now a long-term survivor at the age of 71! She and I are the only females on my father's side, so 2 out of 2, BRCA would make sense. But there goes my theory on the fertility drugs! 

Just this week I mustered up the courage to feel my tumor again and I'm ecstatic to say it's definitely smaller! Such a huge relief to know the chemo's working! 

Wishing you all the very best. 

Allydp I am following the same routine as you.  My tumor has disappeared and prior to starting taxol. Best of luck to you also.

Is anyone taking vitamin C as a separate supplement (not part of a multivitamin)?  Someone told me that Lypsomal Vitamin C is best.  Do you know if vitamin C supplement from whole food is as effective as Lypsomal Vitamin C? 

Ally - no need to apologize. If you ever read more of the 800 pages (!!!!) you will find new people dropping in all the itme. That's one of the things that has made this thread successful - new people coming, oldies offering support, finding others with the same dx, tx etc.

Ally, I have not heard of the gene called Li-Farumeni's.  Are you also doing the The BRACAnalysis Large Rearrangement Test (BART) test?  

Ally, if you want more nutrition info and other stuff, please PM me privately your e-mail address. I have lots of nutrition info I send the girls and have an e-mail all set up with lots of information. The nutrition info is from a TNBC survivor who shared with us the nutrition info her cancer nutrition specialist recommended for TNBC.  Also, in the e-mail are other attachments, Including literature from the TNBC Foundation titled:  "Guide to Understanding Triple Negative Breast Cancer", and in it:

Page 33 - "Most women
with triple-negative breast cancer never have a metastatic recurrence or a new
cancer." It's nice to have that to refer to, if you have a worrisome day and a doubt pops up in the mind!

There are also some books that I found great to reference for healthy eating in general:  Cancer-Fighting Kitchen and Crazy Sexy Diet 

I made many changes, include completely eliminating diet coke, coffee, etc ... all drinks except spring water and organic green tea. I also made other slightly obsessive changes such as throwing out old pots and pans with teflon coating (switched to stainless steel), replacing plastic with glass, switching to organic and pba-free shampoo, conditioner, lotion, and no longer using the microwave for anything.  At restaurants, I'm detailed and communicate exactly how I want my food prepared (no oil, poached or steamed, no grilled black marks on fajitas, etc) and I ask questions like: are your beans out of a can, are they homemade, do you add oil?  I've become a little high maintenance but now that we know what our favorite restaurants use for ingredients and how they prepare it, I'm able to feel confident with eating out at certain places.  

The changes took time, but the worst offenders I did instantly.  I started off with a few changes, and each week added a new change, that way it wasn't drastic and not all at once.  It helped to do it in steps, so as not to feel deprived while switching out and replacing previous choices with better ones. For the workouts, I keep a list on the fridge and I joined the "Let's Post our Daily Exercise" thread, which helps me conquer the exercise on the days when I don't want to go. I started out slowly on exercise as well, and gradually increased my miles until I found a regimen that I could adhere to and was secure with.  

In my opinion, that's the key in a lot of survivorship plans - finding a balance that works for you and your body.  Everyone is so unique and what is a concern in one area may not be a concern in that area to someone else. 

Over time I've added in a few splurges and treats to the eating, and I prefer to make myself earn it, but sometimes it's not worth the extra energy working so hard for it. Except dark chocolate and McDonald's $1 Unsweet Tea ... I can get through a really intense work out if I know I have either one of those treats waiting for me afterwards.