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Old 11-18-2016, 01:17 AM   #21
Paula O
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Re: Triple Positive

Hadit wrote:
Wow Paula, sorry to hear of your bc coming back, tho not recurrence. This is my fear. How old are you now? I'm 55 and that's way too young to throw in the towel. The more I hear of others who are triple positive let's me be better prepared. What is the Kadcyla trials?

Hi Hadit, fellow cancer fightin' warrior woman!

I am 58 now. No towel-throwin'-innin' for any of us gals here!

Here's a link explaining Kadcyla:
http://www.kadcyla.com/about/her2-targeted-treatment

The beauty of the research study I heard about through my oncologist was, if I had qualified, it would have allowed me access to the drug at stage one this time (last time was 3a for me in 2010) without having metastisis which is the typical usage/approval of the drug. The side effects listed on all these oncology drugs including Kadcyla sure are daunting when you take a look though, huh?! The reality of the risks brings out the "YIKES" factor in all this as we determine if the benefits outweigh the risks.

Suzan W: YOU GO GIRL!!!!!! Thanks to you and the other ladies for sharing your stories. too!

Paula
My blog: http://jpoliver.com/wordpress/archives/1617
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Old 11-19-2016, 02:59 AM   #22
konagirl
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Re: Triple Positive

I was diagnosed triple positive in Feb 2015 after a biopsy. Stage 2. At first they thought that the lump I found in my right breast just before the new year was an abcess. I somehow lucked out and got a teriffic oncologist who put me on the TCHP regimen for 6 rounds of chemotherapy. Did chemo every week for 18 weeks. Managed to not even miss a day of work as I brought my computer with me while I received my infusion. I received great support from my husband and my co-workers. Got a port, best decision ever. Managed to get through all the rounds of chemo. Did develop nuropathy which is very slowly going away. Herceptin is the miracle drug. It started to reduce the tumor in the first three weeks. Had a fantastic surgeon who did a lumpectomy. Clean margins and clean lymph nodes. Then after a couple of months recuperating, I did six weeks of radiation. Just in my first year as a survivor. Feel like myself again. My hair has grown back although now curly. It was rough at times, but I managed to get through everything. Just trying to stay healthy and keep positive thoughts. I do sometimes have anxiety. Busy working on a new project so that's great.
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Old 11-19-2016, 07:35 AM   #23
Hadit
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Re: Triple Positive

Konagirl, thanks for sharing your story. Yours is so similiar to mine. I was dx stage IIA, grade 3 and Her2++ in Sept 2015. Like you, I did chemo 1st (neoadjuvant). Tho I did 5 out of 6 rounds every 3 weeks. I wonder why yours was different with weekly chemo. Not heard of this treatment regiment for triple positive. I did lumpectomy and got clear margins and clean nodes too. I'm still waiting on more hair to grow but it's now just long enough that I no longer wear a ball cap in public. I was way too sick to do anything during chemo. I don't know how you did it. Do you still have your port in? If not, when did you have it removed? I ask, as my onc wants me to keep it in for 2 more years and I"m wrestling with this. Also, how old are you? I'm 55, thanks
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Old 11-19-2016, 06:22 PM   #24
konagirl
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Re: Triple Positive

Dear Hadit, each round was three weeks. I called the first week of each round "chemo heavy" that was all four drugs TCHP, the day after this I received Neulasta. The next two weeks was "chemo light", I just received TC each week. Prior to all chemo, they gave me steroids. My doctor said that many patients can't get through all 6 rounds. Happy that I was able to get through it. I certainly had my days of feeling crappy. Being able to work was a great distraction from my illness. I had my head shaved right after I started, the chemo was going to cause it to fall out so this was cleaner and more empowering. One of my girlfriends went wig shopping with me. Great wig, looked just like my hair and a lot of people didn't know until I told them. I still have my port, my oncologist wants me to keep it in for now. I have to get a port flush every eight weeks. I was diagnosed at 59, right before my 60th birthday. My husband and one of my girlfriends threw me a surprise birthday party. I started my chemo three weeks after that. I finished the year of Herceptin on March 30th of this year. My oncologist was all about the latest therapy regimen. I'm now 61. Just recently had follow ups with my oncologist, surgeon and radiologist, all looking good so far. My surgeon is a colleague of the Doctor at UCLA who developed Herceptin, I told him to please pass on my sincere thanks for giving me and so many women a chance to beat this. Hang in there.
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Old 11-20-2016, 08:03 AM   #25
Hadit
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Re: Triple Positive

Wow! I wish I could be a fly on the wall at that research center to learn more. Why do you still have your port in? What reason did your onc dr give? Mine said " it's one less surgery if you need it". That's what worries me. I've not met any triple positive bc patients who's cancer has come back within 2 years ( the time my dr wants me to keep my port in). Can you plz help. I meet with him in 2 weeks and am thinking I may just have to put my foot down and get the thing out....... or not.
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Old 11-20-2016, 11:04 AM   #26
konagirl
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Re: Triple Positive

He didn't give a reason. My surgeon is ready to do it when my onc gives the okay. My surgeon is amazing, can barely see the scars from my surgery last year.
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Old 11-21-2016, 06:28 AM   #27
Hadit
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Re: Triple Positive

Konagirl , thank you so much for responding. Your situation is so similiar to mine and this is what I've been looking for. I hate to bother , but will you be seeing your onc soon? I was just wondering what his reason is for asking you to keep your port in longer. I've known other +++ and most were told it was ok to take their port out and I've met no one who's cancer came back within 2 years. You seem to have a cutting edge dr and team, more so than our lil town dr's. I look to you for guidence. thanks
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Old 11-21-2016, 08:02 AM   #28
konagirl
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Re: Triple Positive

My next appointment is mid January. I'm thinking that my Oncologist is being cautious because of how aggressive this form of cancer can be. My surgeon was more optimistic.
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Old 11-21-2016, 09:53 AM   #29
Hadit
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Re: Triple Positive

This is the same reaction I got from my surgeon and rad onc dr's . They both seem to think the 2 years is excessive. I"m torn . thanks
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