Calling all TNs

Islandmama2

keep me posted radical!

My surgeon says I need central access so I think I need one or the other. 

slv58

Hi Islandmama2, welcome but sorry you have to join our sisterhood. I see you are from BC, I'm in Ont. and I believe most of us Canadians get FEC-D treatment. I believe it is very similar, just wanted to pre warn you so that you won't be surprised at your apt. I had FEC D and it is very doable. I lost my hair closer to week 3, but decided to have a good friend buzz it off after my first chemo as I wanted to be the one to take my hair -not C! This was my first bit of control I gained back after a diagnosis left me feeling vulnerable. You are going through the hardest part right now and you will feel so much more empowered after you get your treatment plan. I had a picc line which I was so thankful for as I've always had bad veins for blood draws. You get very use to it and makes chemo no big deal! If you have any questions this is the best place to be, among your new sisters who really understand what you are going through-these ladies have helped me in so many ways, they are a great bunch! Look up the Canadian forum as well-another great group of supportive women. Thinking positive thoughts for you!

Islandmama2

Thank you Shari!

I think I am going to go for a port. My surgeon gave me the choice and I would prefer the hidden port to be honest. I know managing a PICC is easy but a port is even easier! I'm a nurse and have accessed them before.

I would love to chat with you about side effects etcetera. Send me a pm if you would chat with me

Morwenna

Hi Islandmama2,

I'm in Calgary, and I had AC (four cycles) and Taxol (12 weekly treatments). I requested a port and I'm glad I did as I still had a couple of cycles in the arm before my port was fitted, and my veins are terrible to access now! Can't use left arm due to LE.

AC would have been ok, except I developed DVT/PE. I think that's a rare complication, and was the summation of a number of factors. The weekly taxol I tolerated quite well for the first 7-8 treatments, then started to fatigue and had diarrhea so had Tx 10 (I think) postponed for a week. My nails were crappy, and I had a bloody nose, but nothing too dire. Minor neuropathy which cleared up. No bone pain, and my blood counts stayed good throughout, so never needed neulasta. 

My hair started falling out in earnest about day 17 of my first cycle, so I shaved it, but to be honest, it never really all went! Especially the top, which I had to keep shaving!

Hope all goes well for you. It is doable, and I'm back working fulltime now, (physio),  singing with my Sweet Adelines chorus, and just joined a survivors dragon boat team! 

Life is good!

Islandmama2

wow Morenna good for you!

When did you go back to work?

tekwriter

island mama, i just finished taxal and my hair is starting to grow back. my fingers and toes are sore and my arms and legs often ached while i was tacking taxol.

i used a port for chemotherapy my veins are not great and i would hate to have had to try and find a vein.  hope this helps.

Allydp

A friend of mine on Facebook who is a 5 year TNBC survivor just posted that, "Only 20% of TNBC makes it out to 5 years." This can't be right can it? My onc and BS both said I have a 70something% survival rate...not 20%. Can anyone clarify what she might be referring to? Sorry to bring up the whole stats thing, but this is really bothering me. Thanks. 

slv58

Allydp, this doesn't sound correct to me. Of course I'm sure a lot of it depends on grade, size, node involvement, response to chemo. I was very fortunate to have gotten PCR, with no node involvement ( however only had US-no scans) and my MO has said I have a 70% chance of no recurrence! I'm running with that and try not to read any other stats. I figure my MO knows me, my cancer and tx and is best to advise me for my situation. Don't let this worry you, there are a lot of unknowns

Curlyq1974

Allydp, I found this here on Breastcancer.org:  "Five-year survival rates also tend to be lower for triple-negative breast cancer. A 2007 study of more than 50,000 women with all stages of breast cancer found that 77% of women with triple-negative breast cancer survived at least 5 years, versus 93% of women with other types of breast cancer."  so you are correct, 77% survival rate.  Thank goodness because this really scared the **** out of me!!!

Allydp

Thanks so much, ladies. I didn't think she was correct. I messaged her and asked where she got that stat from. We share the same MO, so I can't imagine it was from her doctor...since I was told the 70 something. Ugh. I hate coming across these stats. As hard as I try, they send me into worry land. I am vowing to never post stats like that, just in case someone like me is reading!

Islandmama2

my surgeon told me that my 5 year survival was 80-86% compared to others with BC at 93%...

Maybe she heard that 20% don't survive the 5 years?

And just like my surgeon said, he doesn't have an 80-86% chance for 5 years so hard to look at it that way. That's how I'm choosing to look at it anyways 

Allydp

She just messaged me back and said she "read it somewhere." I truly think she's mistaken. I've just never heard that stat before, and we have all been told much higher than that. I'm going to stick to what the doctors think.

NavyMom

In 2009 my MO told me I had a 70% chance of making it to 5yrs.  I am hoping that ladies that are dx in 2014 have it better than that.

Ally....your facebook friend should be ashamed of herself....That type of wrong and negative information is NOT supportive and can be downright hurtful.  It just did not need to be said to you, especially with out knowing where the info even came from.  Sorry that it scared you.

Allydp

NavyMom, thank you. I am a very non-confrontational person, to a fault, but when I messaged her to ask her where she got that info from, I added a quick blurb about how scary that stat was to read, as well as how I believed it to be grossly inaccurate. What's worse is she leads a local FORCE group. She should be even more ashamed to put that kind of negative/wrong info out there as a representative of risks. She responded to me and apologized, which I appreciate, but I could've done without that jolt of anxiety today.

placid44

Yes, and the 77 percent sounds like it is all stages combined. As a stage 2b with a partial response to chemo, my MO put my five year survival at 85 percent. And if I make it to five years, I'm probably ok because TNBC recurs earlier than hormone-positive.

placid44

Maybe your friend she is confusing it with another stat I have read: TNBC accounts for 5-15 percent of breast cancer diagnoses, but 25 percent of deaths, by "volume" of women, if you know what I mean.

Cocker_Spaniel

Ladies,  boy what I wouldn't give for some of your percentages. Mine is only 50/50.  Oh well I guess thats life and nobody really knows. 

Allydp I'm glad you managed to get that sorted with your friend and yes it scares the shit out of you to read all that crap and cause unwanted and unwarranted anxiety.  We can do without all the negative stats and percentages on recurrence.  We have enough to deal with as it is and it's very scary on those 'what if' days.   

Had my breast surgeon appointment today.  Everything still seems ok and he didn't appear worried at all until he said I'll see you in four months if not before,  which gave me a jolt cause I thought I bloody hope not. God I hate these appointments coming around.

Morwenna I was lucky enough to work full time throughout my treatment. I was set up at home and luckily my bad days were really at the weekend and also on Mondays  so somehow I managed even though I had to drag myself to the computer some days.  Still I got through it luckily as we do and also have to.   

Have a great day ladies.  Do something you really enjoy.

Lookingforward66

Cocker,

Your stats are the same as mine after I had to stop the chemo. 50/50. I just keep on. No one guarantees us tomorrow so I just doing the best I can every day.  My arthritis is a challenge as some days hard (painful) to walk.  I see my MO every 6 months unless a problem but get labs done every 3 months & fax them to her (all at her request). My primary does the labs faxes to me & I fax to her.   I just take my supplements, B-12 & D-3. I stay off baby aspirin 1 week before labs. My primary is fantastic as he will do any lab I ask if we talk about it & he sees my concern.  I still going to yoga some days better than other but still good. 

Hang in ladies. There are days now that I forget all about "C"!

Take care to all,

Marsha

Radical2Squared

I am a bit of a math geek... the only official 20 percent I know related to tnbc is that about 20 percent of breast cancers are triple negative...also out of the triple negative bc ladies, only about 20 percent of them do not have a BRCA mutation...

Nettie1964

Not trying to make light of anyone's feelings and fears as we all have them, this was just a little reminder for me that I thought I would share!  Hope it doesn't offend anyone!

adagio

Nettie - love the picture and the caption  -  and it is so true!!!

Radical2Squared

Nettie... I just wish it was easier to do!

jenjenl

Hello my friends - I'm back from a wonderful vacation with my hubby to st. martin.  it was glorius!  tomorrow i go see my MO about the neck gland and pain on the right side so hopefully nothing but whatever it is it is. 

Welcome new girls.

Cocker_Spaniel

Lookingfw I too have days, more now than the other sort, where I forget about the big C.  I think we have to think that way or we will never look forward.

Nettie no offence at all from me but it is so right.  Worrying doesn't help at all and just makes us miserable and more afraid.   

Jenjen glad you had a great time and could forget for a while.  In your pocket for tomorrow and keeping fingers crossed all is well.

Cat and Fighter hope things are going ok for you both as well.  Keep us posted.  Cat did you get into the trial.     

LPBoston

TifJ and Nettie - I too have pains in odd places and don't know what they are.  I do know the two week rule and try to live by that.  I just had a physical with my regular nurse practitioner (she had no idea what I went through last year) so immediately ordered an xray for my right rib section.  When she was poking around it was very tender in a certain spot and she got worried. I think she is overly sensitive with me because it is my second time around with BC.  I haven't gone to get the xray yet but will.  She says the chemo does a job on your bones and it just may be my bones are weak there or they could have used some type of tool during the surgery because I had tram flap reconstruction thus making that area sensitive.  Who knows the body takes a beating!!!

Stupidboob

http://oregonstate.edu/ua/ncs/archives/2014/feb/osu-study-osteoporosis-drug-may-treat-breast-and-liver-cancers

Under this link............I hope it works because I read from Facebook................A lot of long term survivors writing in the comments
on this ladies page.     Gives us all hope

https://www.facebook.com/hashtag/triplenegativebreastcancersurvivor?source=feed_text&story_id=10152078324861722

Radical2Squared

Thanks Stupidboob,

On the FB link, one of the last comments is a gal celebrating one year today! Very active status update! Lol

mags20487

errrr...my follow from US was today.  The radiologist is recommending a biopsy even though the report says little suspicion for malignancy.  Onc says let's be safe rather than sorry.  I hate this!  Last biopsy was so painful.  This spot is in between the two NEW GIRLS near the sternum.  Hope they do not mess anything up!!  Will post when I know when it's gonna happen and what is up.  Only 2 weeks ago I thought I was in the clear.  

Maggie

jenjenl

well the oncologist is ordering a cat scan to check the liver

I had my surgery January 2014 with wonderful results.  I had stage 2 in May and stage 3 scheduled for July.  My doctor put some disolvable mesh in my tummy vs wearing a binder.  about 6 weeks ago I started having pain on the right side above my insion closer to the ribs.  I just watched it, it would come and go and now im more aware of it.  i thought that maybe it was the disolvable mesh disolving but would have thought it would be the same on both sides.   my MO ordered a scan but doesn't want to schedule it until i see my surgon to see if it's normal or not.  I have a bad feeling the same feeling i had after my biopsy.  when i had my scan prior to the DIEP (the abdominal scan) there wasn't anything but we all know how that goes. 

scared and hopeful.

Allydp

Mags, I am praying for you that the biopsy is a simple, pain free procedures and that results are clear!

Jenjen, you are also in my prayers. I hope the pain is just from the mesh and the CT is clear!