Calling all TNs
Comments
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SweethearinTX - I was 30 when I was first diagnosed. I think argynnis was right in saying being a little younger and more active, it may be easier for our bodies to bounce back. I took up running for the first time a few months after my chemo.
Argynnis - You mentioned hoping your period comes back. Mine came back 16 weeks after my last chemo treatment and it was a beast when it came back. I know everyone is different but be prepared to have emotion overload when it does return. I was a basket case the first few months until it regulated itself.
Hugs to everyone!
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Beachbound- I had that toward the end of my chemo but it went away a few weeks after I finished my last doseof chemo. So sorry that you have had this problem for so long!
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Thanks Sweet. It's not as bad as it was when I was in chemo but it still bothers me.
I'm still hoping it will correct itself one day.0 -
OBXK I hate this! Big big hugs.
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OBXK - I'm so sorry, there just are no other words. Well there is one.....FUCK!
Luv - thinking of you and hoping you're doing better.0 -
Just an update guys - I just spoke with Luv. She is home and "doing the best she can". She is still having trouble with her coordination and walking. She will be seeing her oncologist on Wednesday. *concentrates and prays for positive results*
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Karen - I am so sorry that your protein won't work for the therapy. Stay hopeful that something new will work. Keeping you in my heart.
CockerAnnie--I'm missing you. Are you OK?
Hope everyone's weather has cooled off.
Joy to everyone Jan
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OBXK: Sending you strength....grrrrr I hate cancer
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Una- yes neighbors! 😀
Titan- that's awesome and thank you for welcoming me! I love Texas, probably too proud. Lol
Beachbound - thank you, I hope so. I was pretty active before all this so after I am done, I hope to slowly ease back into my routine.
Love and hugs from me!0 -
Jami...I would be surprised if you even get a chance to slow down. Your girls will keep you active, busy and alive. Before you know it, you will be done with your treatments and wondering where the time went. That's a really good thing though
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Thanks for the love and good wishes.
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We are loved indeed Karen...very much so.
Just back from my Onc ck up and woo to the hoo....circulating tumor cells are 0 and CA 27-29 is 16...lowest since diagnosis. Approaching the 2 yr mark and so happy. I almost did not want to post my news but thought the TN family could use a shot in the arm. We are all in this toether with the good the bad and the ugly! Love you all so much
Maggie
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Maggie, that is wonderful news!!!
Go celebrate. Chocolate is always good
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To everyone on the recurrence chemo couch - my mid-chemo CT scans came back clear! The Evil Ixempra and her sister Zelda (Xeloda) are working. I'm having #5 of 6 right now.
I wonder if it's okay to dance down the hallway with my pole and tell all of the other patients? Oh wait, I don't mean a real pole dance!
Phyllis0 -
Nebraska Phyl - I'll do the happy dance for you. Best news ever!!!!!!!! Just remember to behave yourself. You probably shouldn't go gettin in any trouble. Hope Zelda and sister are kind to you this time. Jan
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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?
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Debra, this study was for adjuvant therapy, I wonder if the outcomes are different for neoadjuvent.
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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.
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I find it disturbing, as I just pulled the NCCN guidelines for TNBC adjuvant chemo, and only these 4 are listed as 'preferred regimen' in both mastectomy and lumpectomy, for Stage 1 and Stage 2 patients.
TAC, Dose Dense AC followed by Paclitaxel, AC, TC. Only those 4 listed as preferred. CMF is listed as an 'other regimen'.
I will have to find another study to get my mind off of this one!
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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.
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I'm deleting my previous post with the link, because I think if someone reads it, they might jump to the same initial conclusion I had ... which was not correct.
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Good news Phyllis!
Lovely Face..i must have posted wrong or something...my 7/20 date is 53 months out...so the 20th of a every month is a celebration for me...and you!
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Phyllis and Mags - you both dance you little hearts out. So wonderful to hear some great news!
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My cancer center has me up for a new trial drug. Tissue has to be tested again.
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Karen - So happy for you. Praying this will work out for you. Jan
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YAY Phyllis!!!!
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Phyllis, awesome news!
Karen, that is an excellent update! How long before you might be approved to start this drug? How long will it take for the tumor to be tested?
I'm including a link to a story on our local news website, about a breast cancer preventative vaccine. It had 100% success in mice.
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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.
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What do all of you think about being involved in the drug trials? I am going to see my doctor in 2 weeks and don't know if it will be offered to me or not. Not sure how to feel about them. Since my chemo was stopped short, this may be necessary?
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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.
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