Calling all TNs
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cccmc2 - I hope you're feeling better.
For me what has helped is being very busy (started school in September in an intense 36 month full time continuous program). Between prioritizing sleep, exercise, healthy eating, family, my beloved dogs and oh yeah, schoolwork, there is not much time left for worrying about this bc beast. I just keep moving forward, assuming the best and that this is behind me.
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6 years and counting!
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Yay, Cathy!!!!!
SO EXCITED for YOU!
Risk of recurrence plummets after 3 years, as you know. One study estimated down to 5% or so.
Cheers to YOU!!!!
Janet
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santabarbarian, thats the most amazing news. Congrats..
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Batesburg....
Hey Janet...is it three years from diagnosis, surgery, or end of treatment
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cathytoo, I asked my Oncologist the same thing. Its kind of tricky , from surgery. Or end of radation or after Im done with all my treatments. Up to us as there's not a standard.
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urdrago71....I think the most important thing is that we keep going and take advantage of every day. Personally, what makes the most sense to me is either surgery date or end of treatment. My surgery was 11-13-15...so i’m still at three years. Unfortunately, we’re always anxious about a recurrence, even years later.
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Cathytoo, I agree..congrats..
At five years my doc said I wld be considered cured.cannot wait to get to 1 year..than I'll keep counting!
Questions for TN..has anyone started the Keytruda trial? Looking for suggestions as I have possibility to enroll. Also I will be starting the Xeloda oral pill to help reduce my reoccurrence..
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I am so happy for those with 'all clear' reports and I send support and strength to those still in the midst of treatments!
Hugs from NYC
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Hi Cathy,
That is from Johns Hopkins Breast Cancer Center .....and it is 3 years from diagnosis.
I had a long talk with my integrative PCP yesterday and he is a firm believer that most cancers, if they are going to recur, do so within 14 months......now, I didn't ask if he meant from diagnosis or treatment but common sense tells me from end of treatment.
Janet
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Janet..I have to agree with you. It makes sense to me, also, that you should begin counting from the last day of treatment. That said..,my last treatment was July, 2016. Fingers crossed
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Hello CathyToo,
I am just popping in to say congratulations on your three years since diagnosis and that all is well.
It is important for those of us who have finished treatment and are marking anniversaries to pop in to inspire others. I am a few days away from 13 years and 4 months since my diagnosis.
There are lots of names on the TNs that I do not know from way back, but I remember you, Meadow and Valstim. I have not seen Meadow on the thread in a while. I think we shall always have Annie in our thoughts.
Best wishes.
Love.
Sylvia xxxx
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Hello Moth,
I was glad to know all is well with you and that your busy life keeps thoughts about cancer at bay.
Good luck with your studies.
Love.
Sylvia xxxx
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On the news today, talking about Vaccine for TNBC from Mayo in Jacksonville, FL. I tried finding the clinical trial but have been unable to pinpoint it.
I made the mistake of commenting on my local news facebook page. All there is people ranting about big pharma, what they think causes cancer and their magic cure. Not exactly helpful to someone going through it.
I finish my 8 rounds of Xeloda on Sunday and then that's it for treatment. It's a scary feeling and trying to figure out my new normal.
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Jennifer522,
I would love to do that trial. They also have it at Mayo in Arizona and I'm in SoCal, so it would be about a 5 hour drive. It's so hard rationing your time for all these treatments. I've been lucky to have an employer who has been very understanding, but due to a company reorg, I will be losinig my job soon and a new employer surely won't be so understanding. <sigh>.
I will look for the trial and if I find it I will post it here.
R
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Here is the link to the vaccine trial.
Note that this is a Phase 2 trial, so my understanding is that they are testing dosage. I would prefer to be in a Stage III trial, but this is promising.
Rebekah
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This sounds promising! Thanks for the link
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Jennifer522,
It was posted in my April chemo group.
http://www.ktvu.com/news/mayo-clinic-sees-hope-in-breast-cancer-vaccine
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News story must have gotten quite a bit of notice- I also had someone send me one of the articles.
I’m not an expert at this at all but i sought a couple second opinions after not getting pcr. One raised concerns with this study about exposure to more Cytoxan since I’ve done AC. Everybody’s situation is different but might be worth asking about if any of you are seriously considering the trial.
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Jennifer, there's also the keyturda trial that I've found in my local area so I would think other hospitals would be offering trial.
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Cathy
So happy to hear about your 3 year mark. We are celebrating with you.
))Sylvia congratulations on your upcoming 13 years!!! You are so faithful to help on these threads. Your posts are always encouraging.
To all my TN sisters out there, take it one day at a time.
Much love to the newbies. As our sweet Annie would say to us “keep going!!”
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My only risk factor for BC is my exposure to an endocrine disruptor, DES. No genetic BC in my family tree and long-lived relatives. I got TNBC shortly after menopause, and think perhaps the final dropping away of my hormones left me vulnerable to some chain reaction. Insulin resistance perhaps any hormonally- controlled process. I am considering whether or not adding some bio identical hormones after treatment might assist me in fighting recurrence? Anyone doing or investigating this?
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Rebekah, that vaccinedoes sound promising. I think it’s the adriamycin that has the lifetime limit, not cyclophosphamide. But I could be wrong, I’ve tried to push that stuff out of my memory banks.
Cathytoo, I finished treatment on 10/14 two years ago!
Valstim, I’m dealing with lymphedema too, but at this point just doing dialysis manual lymphatic drainage.
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Jennifer522, I read about the vaccine trial as well and wondered how we could find out about entering it.
I see my MO on December 4th so I'm going to ask about the possibility of getting in the trial. The article I read said the vaccine should be taken in combination with Trastuzumab. I'm not familiar with that drug - anyone know anything about it? I took Xeloda after my surgery.
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Ladies, I'm struggling. I've been taking Xeloda since July 30, initially 4000, very quickly reduced to 3000. I am 7 days on and 7 days off.
This is the end of my 6th week, or what would have been my 3rd set if I'd been about to do 14/7. I am nauseous. I ache everywhere, especially in my weak points (lower back, knees). I feel like I'm 64 going on 90. Because of my IIIa diagnosis, pre-surgery, and both a small remaining tumor as well as 6/14 nodes positive with axillary dissection, I really need to take this stuff. We TNBC folks don't have many options.
It may be that when my anniversary of treatment came and went last week, it's had me a bit down. Feeling the breeze in my short hair, wearing the clothes I wore for my IV chemo, still struggling with range of motion and doing PT for the surgery and radiation on my right side . . . and now it's been a full year. I expect to start the clinical trial for Keytrude Dec 5, so I will have 35 days off from Xeloda. If I do not get in the medical arm (get Keytruda), my MO will want me to finish the normal amount of Xeloda. That will be 14 more weeks of 1 week on, 1 week off. If I do get Keytruda, I will get it through my port, once every three weeks. For all of 2019.
But I am alive and have every expectation of being alive for decades to come. This is just really, really hard. Thank you to all the NED folks who've boosted us as we go through treatment. And thanks for letting me vent.
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Paula, same here at least feeling like I just want a shot and call it done.. right now I dont even know where the end might be. Radation next, than Xeloda with hopes of Keytruda..oh and cording so PT til ?? Mixed emotions on the string of yoyo..
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Paula, I’m sorry that you’re having such a rough go on Xeloda! I hope Keytruda treats you better. Feel free to vent away.
Totally unrelated** We had a guy over to try to sort out the audio system in this house we bought last summer. We haven’t had tv up and running since August! Anyhow while he was here, I made a joke about those clap on/ clap off things that you’d see on tv years ago. You clap from your bed and your lamp turns out. We had one in our dorm room almost 30 years ago. So the guy looks at me and goes, “wow- you’re really showing your age” I said- well you’d probably be amazed at the things I’ve done to make it this far.
He looked at me like I was crazy. What a dufus!!
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https://clinicaltrials.gov/ct2/show/NCT01990209?te...
clinical trial for AR+ TNBC
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Santabarbarian,
Hopefully none of us will ever get to participate in that TNBC trial as it's only for stage IV metatastic patients.
Maybe if they eventually open it to earlier stage patients we can utilize it.
Trish
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