TRIPLE POSITIVE GROUP
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Thanks so much to everyone who responded to my post about having wine once in a while! It really is wonderful to get so much feedback!
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Hi All! I am coming to the end of my Herceptin and my MO is talking about a new drug called Nerlynx for 1 year after Herceptin. Have any of you taken it? How bad is it? I have read mixed reviews about it online and since I had stage 1 bc with a low reoccurrence rate (per my MO) I am not sure if the side effects of it out weight the benefit I would receive if any. Thoughts? TIA
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Trip - I'm still in neoadjuvant chemo but I read up on Nerlynx and I'm not entirely convinced it does anything. I mean, the numbers from the studies just aren't convincing and they had to cut the study participants into ever smaller groups to find one that got benefit from the drug, and IIRC only node positive, hormone positive women benefited from the drug. As an engineer who has worked extensively with statistical analysis, I've learned that if you cut data in enough ways, you can get it to say whatever you want and I wonder if that's what happened here. That being said, I don't think it will hurt, and it might help, so if my MO recommends it I'll probably try it but if I have serious troubles with it then I'll stop.
I had my second echocardiogram today and my LVEF was 1% higher than the first (pre-chemo) echo. 70% at the first and 71% this time. Which is amazing because I'm not working out to the same intensity that I was before chemo, so I was prepared for at least a little bit of a drop. Anyway, that is one less thing to worry about.
I also got a tentative date of Aug 22 for my surgery, which also happens to be my husband's 34th birthday. I asked if they could move it, but only if they would move it up and not back, but then I talked to him about it and he doesn't really care. Still, I'd liked to have the surgery moved up because Aug 22 is six weeks to the day from my last chemo and the window is typically 3-6 weeks. I'd rather get it done sooner than later.
TCHP #5 of 6 is tomorrow. I'm so close to being done. So close!!!
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i have had long discussions with my MO about having 1 or maybe 2 beers. She said regardless of the info that is there she can't find anything that she feels is concrete enough to tell someone "NO DRINKING" she said as long as you don't turn into a raging alcoholic she sees no problem.
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TriplePos, my oncologist wasn't impressed by the study purporting to show Nerlynx's effectiveness. But, some women on BCO.org are taking it, and there are some threads about it. Use the "search" function on the left of the screen to find them.
Wow, hapa, you're in awesome shape even during chemo. Good luck with your next infusion!
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Thanks for the responses. Congrats hapa on being almost done with chemo! Glad your heart scans are good
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Wow hapa that's spectacular! Congratulations! I also worked out during the chemo months. More or less same frequency, less (a lot less) intensity. My LVEF was the same as before chemo. My muscles hurt for an additional month though. And yes, you are so so so close to being done with chemo. My last chemo was March 22nd and I am a different person now.
I reached a major milestone today, ladies. I got a haircut! I didn't buy a wig when I lost my hair, wore hats all the time. Starting last week, I had enough hair to go around without covering my head. And it was very short but out of shape, so I went to a salon today and they fixed it around my ears and the back of my head. The woman at the front desk looked at me in disbelief when I told her I needed a haircut, because my hair looked so very short. Then I explained that it just came back and was out of shape and then she understood and she was very nice.
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Congrats on the haircut, Laughing!! Maybe I’ll need one by Thanksgiving. Fingers crossed!
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Yea for the haircut! I hope I need a haircut around Thanksgiving as well. So Herceptin doesn’t impede hair return? Watching closely discussions about wine. Before diagnosis we almost always had our evening predinner catch-up-on-the-day glass. When the kids were little I had late evening “mom time now” glass. Haven’t had a glass since March but my husband will if we are eating out or with friends. Last night he made me a virgin frozen strawberry daiquiri and added rum to his! I’ve always tried to eat healthy, love to cook, watch my weight and swimming had been so essential to me. Who knows what caused this disease. My sister has Parkinson’s and doesn’t let it her slow her down. I try, often unsuccessfully, to emulate her “play with the cards you are dealt” attitude. Hopefully, after all these treatments,I will be more moderate in my wine consumption (an excuse to only drink the very good stuff,😁) but I look forward to raising a celebratory glass these upcoming holidays. Cheers, Dears!
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Hey ladies--this is a question I'm sure has been answered back in this thread but I'm too lazy to look it up. For those on 12 weeks of T+H followed by a year of H every three weeks, what is the total amount of time you're on H only? In my head the whole tx was a *total* of a year (12 weeks of T+H, followed by 40 weeks of H only), but I think I'm seeing it's a full year of H only? Gotta say I'm a little bummed if that's the case. I was thinking I'd be finished May 2019-ish (a year after my first T+H), but is it gonna be more like August 2019 (a year after I'm finished with the T)?
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ingerp - nope - 52 weeks of Herceptin, regardless of how long your chemo is. After you finish weekly chemo with Herceptin, they will likely move you to H every 21 days.
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Hi Ingerp, typically it would be one year, not a year tacked on to the 12 weeks. Protocol changes often, so to be sure, please check with your oncologist.
It’s been 13 months since last chemo and 5 since last Herceptin. My hair is 3.5 to 4.0 inches long. The hair is really a tough one, but, we do the best we can.
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Suburbs--that's what I used to think but suddenly I wasn't sure (read something about 64 weeks of H--aiyiyi!!). Yes--of course I'll ask my MO but it was weighing on me and I knew someone here would have the answer. (And 3.5-4 inches sounds great! Congrats on that. I'm assuming it'll be next spring before I'm there.)
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ingerp - I have never seen an early stage patient do more than 52 weeks of Herceptin in the 8 years I have been on this site. Here is a link to lago's hair timeline - she was doing chemo when I was, and was a participant on this thread for a long time. The dates are down in the corner of each photo so you can estimate.
http://www.lauren3g.com/transfer/hair/Lagohairtransition_03.jpg
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<phew!> Thank you SpecialK!!
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my MO said no way on Nerlynx. For what it's worth. She actually made a face lol.
For hair...I remember my hair growing in uneven for a while. I had to cut it every 6 weeks to shape it. Then after awhile I didnt have to do that anymore, and it grew longer. It took 2.5 years to get back to what it was before I got sick.
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Ingerp, I looked this up recently since I just restarted herceptin and it's been 2 months since I finished chemo. There's a graphic that shows you the number of doses recommended. It's 18 total if you have chemo every 3 weeks. It looks like yours may be similar to their listing for AC+TH which is 12 weekly doses of chemo/ herceptin followed by 14 doses herceptin only every 3 weeks. https://www.herceptin.com/hcp/treatment/adjuvant/d...
My hair is being so slow to grow back in two spots. It still looks like I have a bit of a receding hairline. It's too hot and I gave up on wearing my hat outside. The one day I did soak it in water when I was walking home and that felt pretty good!
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As for Nerlynx, just saw this:
https://www.onclive.com/onclive-tv/dr-mitri-on-ner...
Does that mean Nerlynx should be used for triple positive?
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JVP—that’s exactly where I saw the “64 week” reference, but it looks like that’s a total of 64 weeks for all tx, not the TH for 64 weeks?
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The 64 week total is because of the AC-TH regimen. For the first twelve weeks the patient is given the dose dense Adriamycin and Cytoxan, then the Herceptin is started with the Taxol, as the AC is discontinued. Herceptin is not given concurrent with Adriamycin due to the cardiac risk with both drugs. The 52 weeks of Herceptin start when the patient is already 12 weeks into systemic treatment, for a total of 64.
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hapa - congrats on being almost done, woo hoo! I applaud your commitment to working out while in treatment.
Laughing - congrats on the haircut!
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SpecialK—I knew I was being dense about this and yes I will lock it in with my MO. But I’m already thinking about a trip (well—more than one ;-) ) as an end-of-tx celebration and I’m already pencilling in next May/June. I might do something this fall after T and rads are done but it’s fun to think about something bigger after my last visit to the infusion center. (BTW—I already have a treat lined up for what had better be about two weeks after T and before rads. I’m going toHamilton!)
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ingerp-- we are on similar schedules and I am definitely planning a trip next June when I am done! My parents want to take us to Key West and then we also have our European honeymoon next fall. I cannot wait. When I get down, I start planning my trips!!
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Me too, lg10. We’ll have to post pics!!
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My first Taxol/herceptin was Feb. 3rd and my last herceptin was Jan. 5th. I started AI's two months after last taxol. Hard to believe that was over 13 months ago.
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Taco--thanks so much for this. I am kind of a planner and honestly something in me wants to schedule rads and the rest of the Herceptin infusions like now. I check in with my MO next Friday, and I'll have a conversation with her about timing of rads, the AI, and exactly how many H only I'll be getting. I have places to go/people to see!! (How is the Femara going for you? I also don't know which AI I'll be on. Another good question.)
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Want to share my experience of ovary removal in case someone is considering it. Had the surgery last week. Pretty painless. Did not even take a pain killer afterwards. Just had the follow up visit and everything is fine. Glad I did it. My onc prescribed exemestane (Aromasin) yesterday. He'll put me on the drug for bone density prevention during next round of herceptin infusion. Did not remember the drug name but he said it's once in six month.
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whywhy - you are most likely getting a Prolia injection for bone building.
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SpecialK, Thanks for the info on Prolia. I am small in size and weight. My onc said that I already had osteopenia based on the bone density test last week. I've done mostly running in the past and have never tried weight related workout. Now I think I need to. Anyone tried to weighted vest? Would that help?
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why, if you try the weighted vest be sure to get the type that has small pockets containing the weights. That way you can start out with less weight gradually increasing. Guessing our weights are about 2 lbs each. Sounds like a small amount but it adds up especially when you tire. Love ours & have used the weights for other purposes too. Hugs
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