TRIPLE POSITIVE GROUP
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TriciaK, always great to here about someone doing well about 5 years out! Welcome to this thread.
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Thanks to all of you who are years out and doing well for coming here to give us hope and comfort!
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Steriods definitely reduced the fluid retention for me. I would take them the day before chemo and the next day would lose 5 pounds…every single time. Once I stopped taking them I put them right back on the next day. I didn't get the roid rage from them at all. Took the pill couple of hours before bed and had no trouble getting to sleep.
But you don't want to do long term steroid use if you can help it. It can create all sorts of problems including bad for the bones.
TriciaK 5 years. Keep it going girl.
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Gee- I asked about getting off steroids because the first two times they made me swell up and added five pounds over night! But at my check up last week two things happened. The Onc Nurses said they refuse to give Taxotere to anyone who is not on either Benadryl and/or steroids. They simply refuse because the only person ever to be allowed to quit both went into cardiac arrest...
Second, My legs have some slight swelling right now, which may get worse with the next 3 treatments. The Onc said it helps reduce that...and he's right..today my thighs are almost back to normal. I can actually see my quads!
I'm on steroids three days...and they increase my appetite (which I hate) and they keep me up at night....but they also help with the swelling. And today I got the BEST workout! lol...probably be sore but WOO HOO!! I also noticed they help with chemobrain....I'm not entirely out of the fog, but it is much easier to focus. WOOT!
(Sorry, steroid high.
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TriciaK...so glad to read this...thank you, and welcome!
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Another highly triple positive here. 100% er, 50% pr, and -HER2+++. I've got 2 more rounds of herceptin and I'm done!! (Except for the BLM this spring...) I'm usually a lurker, and plan on lurking here alot...lol Thanks for starting this thread, it was much needed. :-)
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The onc nurses saying they wouldn't treat anyone because they saw a taxotere reaction makes sense for the first treatment. Some people have severe reactions to taxotere. The steroids are used to make sure this doesn't happen. But you are either allergic to it or you aren't. So for them to demand you take it each time for this reason doesn't follow. I spoke with the pharmacist that mixes the chemo at my university about this.
I have never heard that it was used as a type of diuretic...one of the listed most common side effects is edema, which is fluid retention...just the opposite. Thats interesting. Crazy chemo.
And whatever each of us believes works for you to get you through I am all for!I went vegetarian with my triple positive diagnosis, but through chemo I only wanted to eat Arby's roast beef sandwiches, lol. We do what we have to do, right?
A friend of mine designs oncology clinical trials for a major drug manufacturer. They have to factor out a 35% margin of error for the placebo effect! Over one third the time people believing they are getting a drug to make them better...it simply does and they do get better.That's very powerful!!! He gripes all the time about the word "placebo". He things the term placebo makes people not really take it as seriously as they should.0 -
I was told by my NP that the steriod was for reducing fluid retention with taxotere. It does tend to give people round face though.
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geewhiz - The placebo effect IS very interesting!0
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Gee I understand your point. I do think steroids make me retain fluid, in my face, neck, and belly. But for some reason it seems to take it out of my legs. I was highly doubtful when the Onc told me because I gained so much weight with it the first 3 times (lost after a week)...but the proof is in the puddin..or the thighs in this case...they're less fluid filled....I can see the muscle division on my quads now, yesterday there was too much fluid and I couldn't......but I think it all just migrated to my lower belly. lol
Placebo....I do believe the mind is incredible. If I could learn to focus (I'm uber ADHD) I bet I could cure myself...I saw a show on the science channel of a guy who could heat specific places on his body so much that he was able to "stick" to things and pick them up hands free...picked up an upside down bowl with his forehead...when they hooked him up to machines, it showed the area he used (in this case forehead) getting much much hotter.....he could also focus that heat into his hands....just using his brain...
I'd use that heat on my cancer.
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Round 4 has not been too bad. I got a drop in Taxotere due to the neuropathy and was told to start taking B6 and glutomine. I also got a half dose of neulasta this time since my counts were not that low. I think the drop in both doses has spared me some pain. I have had worse rounds, so I am thankful for the reprieve.
I was told tamoxifen after rads. I like the idea of dealing with one thing at a time. I see rad onc tomorrow for the first time. I have also started researching cleansing/juicing for after chemo. I have gained 15lbs since round 2! I blame lack of exercise and steroids. I also would like to try acupuncture to balance my hormones.
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sunflower - I also had a reduced dose of taxotere because of neuropathy at number 4. How is your neuropathy?0
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Do any of you watch your use of parabens? They mimic estrogen and us trip + ladies definitely don't need that. I'm not sure what to do. I just noticed that my hemorrhoidal cream and ointment have parabens in them and since chemo I use them a lot during flare ups.
The FDA said there was no conclusive evidence of harm, but I want to be as careful as I can. I also don't want to drive myself crazy though.
http://www.fda.gov/cosmetics/productandingredientsafety/selectedcosmeticingredients/ucm128042.htm
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smile - I don't know anything about parabens - what are they used for?0
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Smile on - I have limited my exposure to parabens whenever I can. So I buy paraben free lotions, shampoo and conditioner, makeup, sunblock, deodorant, lip balm, etc. I think of it as one way to empower myself that isn't that hard really. These products are at costco and target mostly, so not hard to find.
Sometimes I feel like I'm chasing my tail a little bit - because I watch certain things as much as I can - like hormone free meat and dairy, green cleaning supplies, no more plastic food containers, etc. But then I have diet coke a few times a week as a treat, and I still drink coffee, and I still love sweets. I wish I could take the leap and go vegan and be juicing, but it just won't work in my life right now.
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I'm triple positive as well! Count me in the group!!
I did TCH for 6 months and Herceptin for a year. I have been on Tamoxifen for 2 years now. My onc does not do any scans at all. I am on an every 4 month checkup plan with him and he does blood work of course each time, but that's it. No scans unless there are any symptoms that would warrant them...
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Cindy - I hadn't heard that about lavender and tea tree oil. I currently don't have any products with those (maybe my Ecos laundry detergent has lavender now that I think of it), but I will definitely look into that. Again, not that hard to avoid, so why not I guess.
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Hi triple positive ladies, hope everyone is doing great. I had my third THC , and i am weekly Herceptin in between , I was wondering if that's ok to get the weekly Herceptin with one day delay?? Has anybody had something like that ??
Hillck I am glad u did a great job with neoadjuvant chemo . My tumor also is gone after 4 FEC and now i am doing 6 THC and weekly Herceptin.
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Omaz, Parabens are a common preservative used in cosmetics & pharmaceuticals. They have been found to mimic estrogen which most of us are trying to avoid.
Saralmom I think I'm with you. I'm going to do my best to avoid where I can without stressing myself out about every little thing. Limiting exposure is much more practical in real life than eliminating all risks. I have found the Burt's Bees brand carry paraben free products that smell delicious. I have used their shampoo all through & since finishing chemo because it is so gentle. It is a little more expensive than other brands though and unfortunately does not usually go on sale, but it can be found at Meijer, Target, etc.
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Omaz- The neuropathy is about the same with the exception that I did not get the total numbness of my feet for days 3-5 after chemo (that is always humorous). Occasional pain and burning in the hands and outside of my feet. Sometimes, I drop things. For now, it is not getting any worse. I started the B6 and the glutomine yesterday, hopefully it helps. Did the drop in dose help you?
I wonder why all of us get different answers about when to start hormone therapy? Off to research......
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Anybody feel so overwhelmed with all the info on how to live life after breast cancer. Holy Cow, I felt like I was on information overload going into this cancer journey and am realizing that was simply the beginning.
I have eliminated so many things from my life-parabens, aluminum deodorants, phalates, BPA, etc. Which, these things were not that big of a deal to eliminate. Just trying to figure out what things that I should change is the ordeal. I have also adjusted my sugar intake and now am looking at alkaline diets and changing my stresses so that the cancer doesn't return. It seems like the information just doesn't end. It is like the more information I get, the more new territory gets unveiled and then there is yet another area that I should probably do some research on. I am beginning to think that I should be getting a degree of some sort!!
Honestly, I think that this is part of coming to a "new normal" but wow, I am getting tired. Just curious if anyone else is feeling like this.
V
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Taking my name off the triple positive list. Oncotype does not show me as HER2+. Oncologist says the OncotypeDX test is much more accurate and he doesn't see why it is not used as the only method since it is done at a molecular level. I'm taking his word for it. He also says I'm dancing with NED
and doesn't need to see me for three months.0 -
- worldwatcher - Good news!
- Thanks for getting back to us with this news it's important.
- Have a great time with NED, off into the sunset together, forever!
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Vmarie I'm with you. I think in such a short amount of time we learn a whole new lingo of medical terms and procedures and we are constantly looking for ways to be as healthy as possible. I think we need to remember to do what we can without making ourselves crazy.0
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learning - That is so true. When I was first diagnosed I really knew nothing about breast cancer. I remember the surgeon talking about oncotype DX, HER2, and many other things and I was struggling to understand any of it. The thing that he did convey really well was the concept of treating locally (surgery, radiation) and treating systemically (chemo, anti-hormone, herceptin). I got that part. I guess doctors didn't always think of it that way.0
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worldwatcher great news! guess we'll have to catch up with you on another thread.0
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Thanks, Omaz
I'm hoping for forever, but taking Tamoxifen just in case. He had run blood work and the tumor markers are normal, and my mammogram and ultra sound in December were clean.
I want to encourage everyone to try and be super-involved with their own cancer care....had I stayed with the first oncologist I saw, he would have had me on chemo and Herceptin and never even mentioned the Oncotype test. He was quite dismissive of the fact that I had done extensive research, a good deal of it here on this forum. I have a lot of you ladies to be thankful for. There is a wealth of information available here and if it isn't here, someone posts a link to it!
He DID say that "they are prescribing Herceptin alone now", which was news to me even though it comes about six months too late had I needed it. However, if I have a recurrence, I may need it then.
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Lago
I'll pop in and say hi once in a while...guess I'm headed to buy a "bottle o' Tamoxifen" now. Is anyone here taking it?
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Worldwatcher Congratulations on NED!
I've been taking Tamoxifen since Feb. 1. So far the only main side effect I notice is indigestion/acid reflux but definitely nothing compared to chemo. I wouldn't notice the menopause like SE's though b/c I already have those leftover from chemo.
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Thanks to everyone for the congrats!
Hill...It would be interesting to see if Herceptin alone will work on DCIS, won't it?
I spent some tough nights back in July because I couldn't get it alone for my IDC. I think God has guided my journey through this...who woulda thunk I'd find out I am not positive HER2 after all...it's been over 8 months since my DX. Naturally, now that it's too late for me to take it in any case, they're giving it alone!
Bedtime, ladies...good night.
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