TRIPLE POSITIVE GROUP
Comments
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90-60-30 Herceptin. What's the difference. 30 minutes gets you out of the chair sooner so someone else can take it. If you need 90 or 60 minutes demand it! I was lucky. 30 minutes worked just fine for me.
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i had to stop H after 2nd only H infusion due to my heart EF. I'll always wonder if I had had it slower if it would not have been so bad that I had to stop. But whatever. So far so good.
My AI, gives me trigger fingers and aches and pains. I just had a cortisone shot in my shoulder on Tuesday.
Rotator Cuff acting up. I've had those trigger fingers since bout 6 months after Arimidex. But overall it will be 4 years for that in August. As long as cortisone shots help me open my hand after I pick things up, I'll live with it. My bone density isn't great but not osteoporosis yet. And my dental Xrays show no bone loss so I'm grateful.
Much live to all
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Tresjoli2 - I started taking Neratinib & Imodium 2-15-16. The nurse over the clinical trial department at my oncology group contacted me about being part of the trial and after a little reading up on it I decided to try it. So far I've had no side effects and I hope it continues that way. I look at it as just another bullet in the cancer fighting gun to keep this stuff from coming back and that I have tried everything offered to me.
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I've read some of the studies (including SOFT) about Tamoxifen vs. OS+AI, but I figured I'd poll the audience.
At 36, pre-menopausal before chemo (but no signs of life in my ovaries as of yet, 3 months PFC). . . Tamoxifen or OS+AI? What's your vote? My MO wants me to take Tamoxifen for six months and "then we'll see," but I'm prepared to talk her into OS+AI if need be.
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Kate, I had the same convo with my onc about ovaries being shut down and wanting me to take Tamoxifen for 6 months -year. Then "we'll see" I still wasn't feeling good about Tamoxifen, and told her that right off the bat when I went to my last appt. and she asked if I'd consider an AI. I said yes, as long as I didn't have to do ovarian suppression drugs, too. She ordered my hormone levels checked and prescribed Arimidex. Haven't started it yet, supposed to wait until after rads. Even at your young age, your ovaries may have completely shut down. I have a friend who went straight to menopause during chemo, and she was 39...
Maybe that's a route you could take when you see your onc... I will say, I kind of had to go in guns blazing, or she would have breezed through that part of the discussion.
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Kate, I was a little older than you...41 when diagnosed. Chemo ended in November and I got my first period mid March. My MO was the same way...take Tamoxifen and wait to see if your periods come back. I was kinda in a grey area for the SOFT trial because of my age. When my period came back, my MO recommended OS/AI. I had originally wanted to go that route but she convinced me to start with Tamoxifen. I eventually did an ooph. That was partially because I'm 90% ER/PR+ but mostly because my mom had ovarian cancer at 18. It's a tough decision. The difference between the two is small. Of course when you're dealing with this, a small percentage can mean a lot to us. The side effects so far are minimal. My biggest complaint is fatigue. Some nights I struggle to stay up after 9pm. I am fairly active during the day so that could be part of it. I believe most is due to being post menopausal now. Do whatever makes you the most comfortable.
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I'm 50, the chemo pushed me in to menopause. My onc gave me the choice. Since the benefit of AI over tamoxifen is not much (and I don't think there's any head to head trials) and the AI causes osteoporosis ( and I'm a cyclist) and myalgias ( and I'm already suffering) for now it's Tamoxifen for me. I'll re- evaluate depending on how I feel after herceptin, and as new trials become available.
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I'm a geezer compared to you ladies; I was diagnosed at 46 but was still premenopausal. I'm doing Zoladex (ovulation suppression) and an AI (Aromasin). When I turn 50, MO is going to check my hormone levels to see whether I can go off the Zoladex. So far, not so bad. I used to get hot flashes (especially in the evenings), but those are tapering off. I was also moody at the outset, but Celexa took care of that. If you visit the "Life with Aromasin" thread, many of the ladies there complain about joint pain. I haven't experienced that myself, thankfully. Nine more years! Nine more years! Nine more years!
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runaway I was 49 and went into chemopause. Chose AIs. I do now have osteoporosis but I knew I would. Family history, small frame and osteopenic before chemo even started. I'm just over the board with my spine and being treated for it.
As a bike rider you still need to find some weight bearing exercises. I'm sure you know there is a high incidence of osteoporosis with cyclists.
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Curious. Why all the opposition tamoxifen ?
Been a mainstay of treatment for many years.
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Hello Ladies!
I have a question: I started Tamoxifen on February 1st and am still doing my Herceptin/Perjeta IV infusions every 3 weeks. A few weeks ago a childhood friend of mine came into town and I had a glass of red wine at dinner. I freaked out afterwards thinking that I shouldn't be drinking. Has anyone been told by their MO that wine is out of the question?
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My MO and RO are both fine with me drinking in moderation, especially red wine. I didn't drink during hard chemo, but that was more a product of feeling like utter crap than anything else.
Moderation in all things.
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ashla - the question is for premenopausal/young women - the SOFT trial data showing that ovarian suppression plus an AI (in the study Aromasin), when compared with Tamoxifen, supplied better reduction of recurrence. Here is an article:
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Thanks SpecialK!
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My MO is fine with me drinking in moderation. I think she said no more than 3 per night/7 a week (beer)
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Special K and Ashla - I'm not there yet (just started Taxol) but I read the Soft and Text trials and decided I will have the convo with my MO about AI instead of Tamoxifen. My Mother (who is a 22 year survivor) was actually a party of the Tamoxifen trial over 20 years ago. It has worked Great for her, and she has not had any major issues...but I think I'm leading to AI anyway
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my last herceptin will be March 10, can't wait. Other thing, I am hoping cholesterol comes down also, since all of the chemo drugs etc, my cholesterol is at 250. The anastrozole could be the culprit also, but can't go off that!
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so I chose ovarian suppression and tamoxifen. My MO was concerned about bone loss on an AI and thought tamox was the right choice for me. I haven't found anyone else with this cocktail so far
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I am tamoxifen with oophorectomy. My baseline dexascan already showed osteoporosis, my MO does not want further bone loss from a medication. I had a Reclast infusion to try and rebuild bone since the ooph will cause boneloss by itself.
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Nolagirl112 Thx..
I was curious as to what appeared a negative bent regarding tamoxifen. Notwithstanding the side effects it has been a highly effective weapon in treating estrogen plus cancers for a very long time.
I hit a brick wall on Aromatase inhibitors after 2 1/2 years and now...3 1/2 years from the start of hormone treatment I've been switched to tamoxifen. My mo says the difference in efficacy is 4%.
Much improved quality of life.
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Ashla,
I don't get the Tamoxifen hate either. Every month or so, someone (who hasn't even tried Tamoxifen!) starts a thread, announcing that she plans to say no to Tamoxifen, no matter what her doctors say. I understand when someone quits a med (like you did) because the side effects are intolerable, but to not even try it first seems a bit unreasonable.
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At this point, I don't hate any of these treatments. If they work, I'm all about them.
Tresjolie, my MO mentioned OS+tamoxifen. I'm leaning in that direction. I'm going to ask her to check my estrogen levels, and we'll go from there.
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ElaineThere
This opposition to tamoxifen is surprising to me. I try to keep informed on the latest news in treatments and thought I'd missed something.
Strange...
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Sort of excited... just got asked to be part of this study. They are only taking 20 people now, not 30, so we'll see. If nothing else, if it helps patients going forward it'll be worth it. I get all the gadgets on Tuesday and then away we go!!!!
Southern New Jersey's MD Anderson Cancer Center at Cooper is setting up a program for 30 of its breast cancer patients that equips them with Apple Watches to help them self-manage their treatment as well as stay better connected to their care team and each other. The center is working with Wayne, Pennsylvania-based behavioral health technology company Polaris Health Directions on the nine-month feasibility study, which will move into a Phase 2, randomized control trial if it goes wellhttp://mobihealthnews.com/43622/md-anderson-cancer...
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JerseyGirl, it is exciting! I hope they continue this program at other locations.
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JerseyGirl that sounds awesome! Keep us posted on how it goes!
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JerseyGirl, that's so cool!
I admit it: I'm a little jealous.
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thanks for sharing the neratinib info, I'll have to ask my MO about it. I quit the Arimidex, just couldn't tolerate the severe joint pain and depression. I'll start aromasin in a few days and hope that will be better, but if not , I will happily try tamoxifen. I was lucky and had no problem with Herceptin alone over 30 minutes.
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Is the neratinib still in a clinical trial or are they waiting for FDA approval?
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Thanks KateB79 and Mommato3 for the info!
Now I don't have to worry if I want to have a glass of wine. I am not a big drinker anyway. I am lucky if I have one drink a month!
Have a wonderful weekend ladies!! I'm excited for the 60+ degree weather we are suppose to get in NJ
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