Calling all TNs

Who is it that posted that you pulled the slip of paper from the bag, and it was the CMF slip (all of them had CMF on it, but you chose CMF). 

What were your other choices besides CMF?

I have often come across long-term survivors (we are talking 20+ years out from TNBC), and I've noticed that the majority of them had CMF.  This prompted me to do more research.

Here is an article (study) on how CMF significantly decreases recurrence in TNBC compared with that of anthracycline or taxane-based regimens.

http://www.ncbi.nlm.nih.gov/pubmed/21528408

Then, I researched CMF vs CT or CMF vs ACT, and both times pulled up information that ACT and CT are more powerful than CMF.

The study mentions recurrence risk, and the percentage difference is astonishing. 

Notice the article says CMF may be more effective ....

What do you all think of it? I was confused at first by the stats, but it looks like one group of stats is about Recurrence Free Survival, and the other group of stats about Survival Rates after the recurrence ... and the ratio posted doesn't have to do with the CMF vs Other Regimens, but rather having to do with recurrence and overall survival?  And if so, is it all about CMF for both?

What do you TNBC scholars make of this?  What did you get when you read it?

That's an interesting observation ... but I still see a large population of the women in the TNBC forum having had AC/CT/ACT compared to CMF.

I've reread the article, and have formed this opinion.  If the numbers were a 20% difference, I feel certain that they would have that as the standard protocol for today, the CMF.

I think the article's numbers are about a) the initial survival rate before relapse from all treatments combined, and then b), the survival rate after a recurrence treated with CMF.

I don't think the article is about non-CMF treatment compared to CMF treatment.

I just read the NCCN guidelines for treatment for a recurrence, and CMF is listed as one of the preferred combination options under recurrence.The guidelines also had preferred single agent ones in a list. So the article must be about recurrence relationships of treatment with CMF vs anthracyclines/taxanes, not initial diagnosis treatments.

For recurrence, the NCCN guidelines had this:  CAF/FAC, FEC, AC, EC, AT, CMF, Docetaxel/Capecitalbine, GT.

I think the title is misleading, and the numbers are about what happens once CMF is administered after a recurrence.

My cancer center has me up for a new trial drug. Tissue has to be tested again.

YAY Phyllis!!!!

Phyllis & Mags:  Doing the happy dance.  Celebrate!

OBXK: Hopefully the tissue testing will go fast and you will be starting new meds soon.  Fingers crossed.

LUV: Thinking about you Lady.  Hope you are feeling better each day.

New Ladies:  Welcome to this wonderful thread.  We are all in this together.  Hang on and take it a day at a time.

Netter I'm no expert but my feeling is if it's a Phase 3 clinical trial, they're pretty darned sure it'll be of some benefit. Phase 1 or Phase 2 trials are probably more based on the theoretical. Again, I'm no expert, but based on what my small mind knows, if my wife were offered a Phase 3 trial (or maybe even a Phase 2) I would wholly support it.

I am sorry for your wife and you.  My husband is going through a lot with me and I understand..............thank you for the info.  Very helpful

Sun, we are here for you.  You've been through a lot, and everyone here has a hug, smile or prayer to share with you.  Hang in there, and come back and post more when you get a chance.  Thinking of you, and hope that tomorrow is a better day!

HI Ladies, oh this is for Kathy and Karen as well (woops didn't mean you aint ladies!). 

The last two weeks have been a shit fortnight.

First of all my beloved eldest girl Cindy found a breast lump.  You know me panic, panic.  Off for a mammo and an ultrasound and the results finally come back today nothing sinister but patient  may like to go to a specialist to confirm this or for further investigations.  So half of a good result.  But I won't be happy until she see's the specialist and gets the all clear confirmed. I thought I was going to go nuts, more than usual!, whilst I was waiting for the result.

Then I came out in a rash.  On my BC side.  Panic, panic. It started off just one or two above my scar, then as they began to fade I got more right on the end of my scar. I thought I would wait and see what happened to my girl first as of course I was making all those bargains again as I did with my youngest girl with God.  Finally I saw my breast surgeon and he said no its not a recurrence.  I trust him deep down so I hope to god he is right.  They are beginning to fade a bit so I am hoping its all ok.

Then, my old fellow got the trash bag ready for collection and left it in the middle of the kitchen floor and promptly forgot about it.  I didn't go home for lunch that day so when I finally did arrive home there was rubbish for england because Tessa and Chloe got into it.  I cleared all that up and washed the bleeding floor again,  only did it the night before, and wacked the two dogs (In case you are wondering a slight tap on the arse).  Then the next day Tessa had diarrhoea all over the laundry from eating the trash. As most of you already know she has pancreatitis and all I could think of was christ another thousand or more bucks for the vet bill but, thank goodness it was in the laundry.  Chloe must have eaten the trash too cause she didn't want her dinner that night either.  They seem to be doing ok now though, thank goodness.  Friggin animals, don't yer just love em.

Then, to top it all off.  I got my lymphoedema sleave which covered just above the elbow to my wrist.  Well that was okay but then my hand started to swell.  So the Doc at work said take it off straight away or cut the end of the sleeve by the wrist.  Well I wasn't going to cut it so I took it off.  Nobody saw it only coming to the wrist under my work uniform.  So I rang the fellow about it and he said well you will have to have one that comes down the arm, through your thumb and half way across your hand.  I thought oh well thats ok, what the heck.  Well, when I went to collect it the chap said it may make your upper arm swell but give it a try.  I thought WTF if it makes the top of my arm swell I won't be able to type at all and I didn't want to try it in case it did swell and wouldn't go down once the swelling was there.  So I aint wearing it at all now. Wasn't a very nice colour anyway!! 

Just to top it off my home computer has kept coming up saying error all week.  I haven't had time to take it in the shop and believe it or not I have typed this all once this evening and lost it. 

So you see it's been a shit of a fortnight.

In the meantime, welcome to all the newbies.  You will think I am nuts, well I am most of the time, reading all this but you will get used to me honestly!!.

Karen frigging great news about the trial.  Now what does this entail in your country and what is the drug called.  I am keeping my fingers and toes crossed for you.

LUV hope you are feeling better.  Sending a big warm hug.

Kathy you still got that tree?  It's nearly Christmas you know.

Hi LVRM hope you are well and not doing too much.  Hope that granddaughter of yours is enjoying college.

Hi Jan I miss you too.  Big big hug.

And I miss my BAK and my lovely face

Titan where are you, speak to me.   

Oh yes, more news while we were out at the doc's my daughters house was broken into by a gang of kids playing truant.  They took heaps of stuff,  clothes, my daughters laptop, x box, and phones and even my grandson's camera which they proceeded to take a picture of all of themselves, stupid bastards. So it made it easy for the police to catch them.   

Well this should keep you going for a while.  Best of all I get to lie in tomorrow morning until 9am unless the old feller wants me to go and clean the cafe.  Bloody men.

Love you all heaps. Annie xx     

Hope you can use a laugh or two:

Undeniable Adult Truths

1. I think part of a best friend's job should be to immediately clear your computer history if you die.
2. Nothing sucks more than that moment during an argument when you realize you're wrong.
3. I totally take back all those times I didn't want to nap when I was younger.
4. There is great need for a sarcasm font.
5. How the hell are you supposed to fold a fitted sheet?
6. Was learning cursive really necessary?
7. Map Quest really needs to start their directions on # 5. I'm pretty sure I know how to get out of my neighborhood.
8. Obituaries would be a lot more interesting if they told you how the person died.
9. I can't remember the last time I wasn't at least kind of tired.
10. Bad decisions make good stories.
11. You never know when it will strike, but there comes a moment at work when you know that you just aren't going to do anything productive for the rest of the day.
12. Can we all just agree to ignore whatever comes after Blue Ray? I don't want to have to restart my collection, again.
13. I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten-page technical report that I swear I did not make any changes to.
14. I keep some people's phone numbers in my phone just so I know not to answer when they call.
15. I think the freezer deserves a light as well.
16. I disagree with Kay Jewelers. I would bet on any given Friday or Saturday night more kisses begin with Miller Lite than Kay.
17. I wish Google Maps had an "Avoid Ghetto" routing option.
18. I have a hard time deciphering the fine line between boredom and hunger.
19. How many times is it appropriate to say "What?" before you just nod and smile because you still didn't hear or understand a word they said?
20. I love the sense of camaraderie when an entire line of cars team up to prevent a jerk from cutting in at the front. Stay strong, brothers and sisters!
21. Shirts get dirty. Underwear gets dirty. Pants? Pants never get dirty, and you can wear them forever.
22. Sometimes I'll look down at my watch 3 consecutive times and still not know what time it is.
23. Even under ideal conditions people have trouble locating their car keys in a pocket, finding their cell phone, and Pinning the Tail on the Donkey - but I'd bet everyone can find and push the snooze button from 3 feet away, in about 1 .7 seconds, eyes closed, first time, every time.
24. The first testicular guard, the "Cup," was used in Hockey in 1874 and the first helmet was used in 1974. That means it only took 100 years for men to realize that their brain is also important.
Ladies.....Quit Laughing.

I have a question that I'm pretty sure no one can answer but here goes...I am triple negative and have my mastectomy on Aug5. I wanted immediate reconstruction but the PS said we can't if I have any nodes affected because of radiation. I've already been told I will have to have the balls to the wall chemo because of the triple negative thing...why would I have to have radiation too??  Isn't radiation localized and chemo hits everything? Seems redundant? 

Relocated------I had the whole works.  Mastectomy, chemo, and radiation.  As far as I knew, that was the standard.  Some seem to have a different treatment.

My understanding is that chemo kills all those cancer cells, plus other rapidly dividing cells.  The radiation is to make sure there aren't any stray cancer cells hanging around that didn't die off in chemo.  Your treatment plan doesn't sound different from mine.  This is all to scary and new to wrap your mind around.  Keep asking questions here.  And best wishes.

Annie------Wow! What of run of unfortunate events.  We do worry about our kids more than ourselves, don't we.  I sincerely hope your daughter's lump turns out to be just a lump and nothing else.
  And your worry about Tess and Cloe- so sorry.  And lymph worries!  Yikes!!!!!!!  Sending big hugs and hopes that everything mellows out in your life.  Your certainly need a break.  Keep in touch.  Jan

Relocated....I had the same question when I was diagnosed.  My MO and BS both told me the same thing.  TNBC is quite aggressive and it is treated quite aggressively also.  Remember there are no targeted therapies for this type of cancer so the treatment plan is to hit it with everything that they got.  They try to get everything because all it takes is for one rogue cell to get left behind and then its trouble again. 

I know its a lot to deal with and no one is happy about it but we have to do what we have to do to survive.  Take it one day at a time and you would be okay.