TRIPLE POSITIVE GROUP
Comments
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nora - do you remember reading posts from dragonfly? That is how hers worked and she started with me in Feb 2011, also possibly Lisa GH I think it is an onc style points thing, but there may be some validity to reduced cardiac impact with the smaller weekly dosing. If you read Genentech's site they show dosing weekly as an option that converts to 3-week option at the end of chemo, they have since I first checked that site 2 years ago.
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Nora, I had the same tx, every 3 week TCH, but Herceptin weekly in between. Convert to herceptin every three weeks for the rest of the year. But I had to stop early duebyo dropping EF.
Dance, THX for the references for low magnesium. Wouldn't you know I found another freaking scenic detour! LOL0 -
Oops that was a big misunderstanding, so now am I
or 
? And it was my MO that prescribed it!I too had TCH every 3 weeks x 6 with herceptin weekly between treatments and for 2 weeks PFC, then the next week started herceptin every 3 weeks to finish out the year (it was triple the dose of the weekly and given over 90 minutes instead of 30)
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Nora: my regimen started in Sept 2012 with weekly Taxol and Herceptin and then in Dec I switched to FEC and Herceptin once every three weeks. I have one more of these ones then it will be Herceptin every three weeks. Holy crap! One more to go!! So much experience on this thread - can anyone tell me if the end of chemo made you feel like the loss of a security blanket? Because I am starting to feel some anxiety. I still have surgery and radiation to do but how do I keep those fears of recurrence at bay? I am looking into different things: meditation, yoga, therapy.
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It was the end of Herceptin that made me feel like my security blanket was gone, then my MO told me in November he doesn't need to see me for a year, as long as I see my PCP a couple of times in between. I thought the AI would help me feel confident, but it causes me a lot of SE's, so not sure how it makes me feel, I guess it helps a little with the security issue. During active treatment I was so busy getting through treatment that I didn't really have time to think about the future so much. Last spring on my 2 year cancerversary I had a mini-breakdown - cried, felt panicky, stressed and the words I had cancer kept going through my head, just like it was new or something - it was much more stressful than when I was diagnosed. I volunteer at my infusion center and when I mentioned it to the nurses, they said it was really common!
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Haven't been her for a bit, but once here, I've spent the last 1.5 hours reading through posts, linking to articles, etc. Such great info here, and of course, kick-butt amazing women. ~smile~ I'm three months out from chemo, still on tri-weekly herceptin, (full dose given in .5 hour) and tamoxifen. Really related to the 'apres chemo/ security blanket' syndrome... I wake up some mornings lately stunned that I had cancer. Active treatment is unlike much else in our lives, we have a unflailing focus and purpose to get through it, and we call on every bit of our inner strength to do it the best we can. Even though I'm still in 'active treatment', I know I am well enough to rebuild my business and get on with life... I'm currently 'percolating' how I might find that amount of focus and purpose and inner strength during this rebuilding stage, because part of me thinks that 'apres chemo' struggle is not just a loss of our security blanket, but a loss of that drive/motivation we called upon to get through active treatment. Definately a curious time right now for me! (Think the tamoxifen is playing a little havoc too with moods and indecisiveness on next steps forward)
There's been some posts about curcumin and supplements... In British columbia, (and other parts of Canada) we have an organization called InspireHealth. It's integrative cancer care where western medicine and eastern medicine meet. (and currently being used as a model for other countries) As a member, I have a medical doctor who works with the 'whole picture' of me. The biggest value has been in the area of food and supplements. They actually do the research and recommend the supplements that will support the individual, based specifically on their protocols and bloodwork, but that do not interfere with the chemo. I'd have been very hesitant to take anything other than 'basic' vitamins and minerals without their expertise. I'm quite sure the supplements I've taken have been a huge support. Based on their recommendations, I'm taking curcumin now, but didn't during chemo.
But since I've been reading this for hours, I'm not sure how long ago the posts were about curcumin.. Hopefully this bit of info helps those who were talking about it.
And a big ethereal hug and well wishes to all!
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Nora_az I have heard of this. She is getting the same amount in total but during chemo 3 injections are = to 1 dense dose. I have a feeling this might be better but doing it this way takes more time and could be more chaotic for the center so I bet that's whey most don't do it. Don't you just love volunteering. I do a lot with the American Cancer Society including being a reach to recovery volunteer. Will be with my reach partner on Tuesday. Her first chemo.
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To clarify since some answered and questioned. Yes, it's T and C every three weeks for either 4 or 6 rounds. Herceptin given once per week during the chemo stage. Then it goes Herceptin every 3 weeks after the chemo is over for the remainder of the year.
Special K- I didn't remember Dragonflys chemo being like that. I must admit though when I saw this I cant help but think "Should I have had it done this way" I cant say a word though because I am there to support and help, not to question and make others question their treatment. They are very sensitive at this point.
Lago- YESS!!! I love volunteering for the ACS. I suppose that is part of the reason I haven't been around here much, too busy with that and also I feel I talk about cancer all the time with patients and at home I honestly dont think about it like I used to. Time does heal our emotions a bit doesn't it?
I had a HARD time yesterday with a man with Lung Cancer. He opened up to me but had never opened up to the oncology staff. It was trying and emotional. Most days though it's great.
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nora - dragonfly and LisaGH and I were in the Feb 2011 chemo thread together and that is why I remember. She did TCH every three weeks for 6 tx with weekly H in between, then switched to every three week Herceptin once chemo was over.
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Feelingthemagic, 2/1/13 will be a year since my last chemo, and I still feel that loss of security, purpose, focus, etc. that I had during chemo, and that you described so well. I was so focused on nothing but getting thru the chemo, that when it was over, I struggled with redirecting my focus (still do, but think I've made progress since my initial hysteria in the few months immediately after chemo ended, and again to a lesser extent in November when I had my last Herceptin). Thanks so much for your thoughtful post. Also, how much curcumin do you take per day, and any particular kind/brand?
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Shore many of us do volunteer work. I do it for the American Cancer Society. The Reach to Recovery program and also planning committee for the Strides walk. If there is a local chapter you can even go there and stuff envelopes (I've done that too). It might give you purpose again. You will meet so many great people, some survivors.
But the most important things you can do is keep a healthy weight, exercise, eat right and reduce stress… and go out and life your life!
Not sure if I need to post the seat belt lecture again.
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Lago - I have actually saved your seat belt lecture for when I need it
. I'm excercising a lot, and spending a lot of time with yoga - where pre-BC, I was always putting stuff like that last (work, carpools, homework, kids practices & games, house stuff, etc.), but now, whatever kind of craziness is going on in my house, I tell everyone to deal without me, and I do my yoga and/or take my nightly walk. Volunteering is something to think about - thanks for the suggestion.0 -
Give it another year Shore. It really does seem so much better 2 years PFC. You just feel more normal and you again. But you are doing the right things. You also got the red devil. You got some really super powered cancer killer there.
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Hi LeeA,
Thanks so much for posting the Science Daily article re: Herceptin. FYI, I have brought a few of the articles to my MO and RO, and they explain that unless the tests are being done in clinical trial, as opposed to on rats, for example, I should not get too excited as it often takes years to move the research findings relating to rats into the clinical trial domain, and then new drugs have to get FDA approval. That being said, it is SO IMPORTANT for each of us to educate ourselves, and share with others and our medical team, info., we read from reputable sites.
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Dear 3littleangels,
Re: losing your hair, yes, after session two, for me, it began coming out in clumps, which I found really upsetting. As we all know, there is so little we can control during treatment, but I decided to go to Walmart, I bought clippers, and I went in my bathroom and shaved my head so that my hair was 1/4". I actually thought I would be bawling and crying, but I found it strangely liberating and empowering. I understand FULLY that each of us reacts to all the challenges differently during this journey, but I thought I would share what I did so that it might lessen your feelings of sorrow, especially.
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It's about time for me to shave mine. Thanks for that post, gratitudeforlife.
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Hi nora az,
For me, I received 3 chemo treatments with FEC, and then for the last three treatments with Docetaxel (Taxotere), Herceptin was given first, followed by the Taxotere. I have to complete a total of 17 Herceptin infusions, so I am going to be completing #7 this coming Friday, Feb., 1. I live in Canada, so perhaps the treatments vary from country to country. I notice that a lot of triple-positive gals living in the U.S.A. have had a single or double mastectomy. Don't know if that was influenced by the presence of the "breast cancer gene," in addition to the presence of a lump, or if that is the standard treatment for triple-positive BC patients in the U.S.A.
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I had carbo/abraxane/herceptin first than AC x4 than finished the year of herceptin after the AC was done..
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To all you wonderful ladies,
Want to let you all know that as of Thursday, January 24, at 9:45 a.m., Toronto, Canada, time, I finished the main treatment portion of my cancer regimen. YAHOOOOOOOOOOOOOOOOOOOO!!! I found the 21 days of radiation to be a piece of cake compared with the SE from the last 3 rounds of chemo/HERCEPTIN. Again, every body is a unique chemistry lab, and I have read where some of you really struggled with SEs from radiation, but I was so thankful that it was very easy. I have actually been able to start working out again, something I missed desperately, so for some of you enduring chemo now, thinking, "Oh my gosh, how will I get enough strength to do radiation?" have hope and faith that you may be like me. I have to still go every 3 wks to the hospital for Herceptin, til Aug., 2013, and I will begin taking Tamoxifen in two weeks' time, but I feel really excited to be able to reclaim my life and not have to go to the hospital every day to get radiated. QUESTION: Some of you ladies tell us you're two years cancer free, five years, etc. From what date do you measure that, from the time you are first diagnosed to the following year, or from the time you finish the aggressive treatment plan til the following year???
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graditude,
Yeahhhhh for you being done as of January 24th!!!
I was initially offered a lumpectomy. I was the one who asked for a double mastectomy. Not because of being triple positive (I didn't even know what that meant back then) but because of my Mom and her brother having breast cancer. I had made that decision about 10 years ago. I had said if I ever found out I had breast cancer no matter how big or small it was, I wanted a double mastectomy.
Me being clear for over two years? I determine that from when they cut that stuff out of me on October of 2010. My chemo ended though on March of 2011, Herceptin in November 2011. Sometimes it seems like such a long time ago.
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Forgot to add.....They didn't think it was in my lymph nodes because my tumor was small and I had caught it fast. I am wondering if they wouldve at last did a mastectomy on that breast after finding out what they did during surgery.
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Kayb & graditude I consider being a survivor and NED two different things. You are a survivor the day you were diagnosed. You are still a survivor if you are stage IV or get mets and or go NED again. While my NED date is 8.31.2010 my survivor date will always be 7.13.2010 (or a week earlier because I knew at my biopsy). NED dates hopefully don't change but they can. Survivor date never does.
The American Cancer Society also believes your survivor date is the day you are diagnosed.
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That's interesting, lago. I've always wondered how it was broken down. Thanks for posting the breakdowns.
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I did a 5K for Susan G Komen (NEVER again!) in October of 2010, 4 days before my surgery when they finally cut that crap out of me. I wore a survivor t-shirt for that event. I went off the ACS's guidelines
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Nora in September 2010, a few weeks after my BMX but before chemo I went to the Komen race to meet some of the ladies from the Illinois Ladies thread for the first time. I for some reason missed them. I was there all alone. I remember seeing the survivor tent… and then to the right an area where you could remember those that passed. They had these giant wooden ribbons placs with metal pins so you could write the name on the ribbon then stick it into the grown. They said it was a garden but it looked like a fucking grave yard. All I could think was Gee this year I start off in the survivor tent but in my future… The greeting I got in the survivor tent also made me feel strange. The wanted me to take all this "pink shit." Oh yeah 2 weeks before chemo I was just dying to get a pink baseball cap to cover my head.
I guess I was creeped out by the whole thing. As part of the planning committee for the Chicago Strides event both this other survivor and I, when asked where they should put the remembrance tent said at the same time "not near the survivor tent!"
Lee I don't know if that's official but that's what it should be. You are surviving the day you are diagnosed. To date I have to say pre-treatment is the hardest part… I survived and did not jump off my 30 story building. I remember back then thinking not only was I going to die soon but it was going to be painful as hell. Diagnosis really messes with your head big time in the beginning.
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Lago,
I am the same way. I seemed to be "flattered" in the beginning with all the pink stuff. Especially in the beginning of this journey. Anymore it annoys the hell out of me. This is not a "cute" or "in" diagnosis to deal with. I get especially annoyed with the "Save the ta-ta" shit. Why don't they have "Bowling for Balls" for guys with testicular cancer? Why are we so singled out as if they have to save our "boobies" give me a frickin' break!
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Everytime I get hit with a "save the ta tas" I remind them it's about saving lives. Some of us don't have "ta tas" anymore. Boobie prizes are not ta tas
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lago, yes, diagnosis does really screw with the head at the beginning and in my case, I had been negligent with mammograms so there was that on top of it all.
nora_az, lol @ bowling for balls!
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Hi!
I'm newly diagnosed and going absolutely nuts waiting for my pre-op MRI! Reading that I'm not the only one that feels this way helps, although I wish none of us had to feel this way!!!
Best of luck to all!0 -
Welcome, barberchic. I'm sorry you've found yourself here (or that any of us have found ourselves here) but this is a great thread for information and the women here (and any men, in case I haven't met them) are very helpful and have been an enormous help since my own diagnosis.
The waiting part of all this is so stressful. I'll pass along what a BC survivor told me the very first day - she works at my breast surgeon's office: just remember to breathe. I know, we breathe all the time but the stress seems to change the way we breathe at first (or something).
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