TRIPLE POSITIVE GROUP
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Thinking of you Linda and hoping all works out well.
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Hey all!!!!! Thanks for the good wishes! No mag infusion! !! 3 times in a row. 3 months with no infusion and on tablets only! If I keep this up my MO will start weaning me from 4 to less tablets a day. Then if I can hold my level I'll finally get rid of the port. But we tried to wean a couple of times and it led to more infusions. So here's hoping things stay up there. LOL
Li da, have they made sure all your meds are working together? My kidney shut down because 2 of my meds and chemo didn't play well together. I guess I'd just ask.
Much love to all.
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moon - yay!
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Good news Moon!!
Thanks Debiann.
I have a schedule for my MRI - it is Oct 31st - some kind of trick or treat Lol
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Good news Moon!0 -
Hello, everyone.
I am a triple positive and having a rough time with Tamoxifen. I am done with Chemo and rads. I am still getting Herceptin and started Tamox 6 weeks ago. I haven't had to deal with hot flashes but the muscle and joint pain, and fatigue are horrible. I read on another thread that breaking up the 20 mg dose into 10 mg in the morning and then 10 mg at night seemed to help some. Have any of you had any similar experiences?
Thank you for creating this topic. I just joined the BC.org and was looking for those in the fight like mine.
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Hi MonCherie, and welcome to Breastcancer.org! We're sorry for the circumstances that brought you here, but we're so glad you found this community. We hope it's a source of support and encouragement for you, you're in our thoughts!
The Mods
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moncherie before you start breaking up you pill you should check with your MO. It might help but your MO is the one that went to med school and has treated many before you. This site is best to use as a guide to ask questions.
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moncherie, welcome. I echo Lago, but also add don't ever cut meds unless specifically told to. And I mean physically! (Not just lowering the dose by taking less) never cut a pill unless they tell you to do that. Sometimes the pill is made in a way that cutting it open messes up the dosage. And you should also talk to the doc before taking less too! LOL
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in general its ok to cut a pill if it has a line, is what i was told- because MOST of the ones that dont have a line arent meant to be halved. usually because they are extended released, and are not meant to be released into your blood stream all at once! Although i have found this not always to be true. When in doubt, ask your pharmacist or doctor.
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Thanks to everyone for your insight. I am glad to have found support.
Have a great weekend.0 -
Also cutting pills, line or no line will create "crumbs". You might not get the entire dose
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yay moon!
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Just say no to pill crumbs!
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YAAAY, miz moon! & welcome, MonCherie!
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Moncherie,
Tamoxifen comes in 10mg doses and yes I have a friend who takes it that way and she has felt better. So ask your MO if you can try it that way and I am sure if she/he says yes, you will get a new script.
V
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Hi MonCherie,
I'm so sorry you are having a hard time on Tamoxifen. I've been on it for almost 1.5 years.
My biggest problem was muscle cramps. I take magnesium supplements and they have helped greatly.
I found I was at my lowest point, and most exhausted, 6 weeks after I finished rads and started tamoxifen and then things started to get better. I have no idea why I was so exhausted at that point- may be adjusting to Tamox while trying to recover from chemo/rads?.
But I also wanted to say that my joint aches and fatigue lessened after I finished Herceptin.
Hugs! Congratulations for making it this far- you've been through a lot!
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Hi everyone, I don't post often but I read everything and feel as though I know each of you! And you are all wonderful women! I have finished chemo, started radiation and moving through treatment and I am starting to worry about something.......SEX........ I don't know anything about the hormone therapy that I will take after radiation. A friend has told my husband that he should be prepared because our sex life is OVER! Now I am concerned about this. My sex life with my husband has always be good and I'm not ready to give that up. Is sex over for triple positive women? I hope this wasn't too blunt, but we talk about everything else on here.
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Agent: NO. You may find that things are a bit dryer but there are lubricants for that. If you haven't been sexually active for a while then you might experience pain. I used Replens for a month daily, then 2x for several months. I haven't needed Replens for a couple of years now. Granted some women do have issues but don't assume you will.
Check out the thread: I want my mojo back to read about women who are having issues.
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thanks lago, I just need to know that there are ways to manage this. I don't want to think that part of my life is a casualty of this disease.
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Yay Moon!!!
MonCherie, I was a mess for the first 6 months on arimidex. I drive a stick and was limping from my short drive to work and back. I could barely stand up some days. It goes away after a bit. I'm fine now and besides a few hot flashes, don't seem to have issues from taking it. My NP told me to stay the course, that it will get worse before it gets better, but she was right. It does get better!
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hi all, I am back after a crazy busy month!
On October 1, I went down to Winston Salem for my last vaccine injection. (More on that below). From there, flew to meet up with my husband in NYC to visit our daughter and play tourists. My son and his fiancé joined us after a wedding in New Jersey for a few days, and we did it all! the fiancé had never been to the city, so in two days, we did the Staten Island ferry, to see the statue of liberty, the 9/11 museum, saw Rock of Ages, watched them doing the today show whole eating at Boucheron bakery and then hit Central Park with lunch at the boathouse. The other days were a little calmer. But we did attend the taping of the Chew, where our daughter ended up on the tasting table and we were in the row right behind her. Loads of fun. Also went to the taping of the Tonight show, with Jimmy Fallon. Also fun.
From there flew home, caught up for a couple days, then drove down to winston Salem for the final blood work. Decided to drive as the weather was supposed to be great and trees were peaking. It was stunning all the way down and back.
Finally calming down. On the vaccine study, I received the AE-37 stuff based on my HLA-blood status, as opposed to SpecialK, who is receiving the other version. According to my study manager, the vaccine appears to be very helpful for triple negative people, which would be good since they don't have as many treatments. They are also looking at how it is helping triple positive as compared to triple negative with more info to come. It appears it doesn't have as much of an impact on triple positive but they are still reviewing all the data and it will be some time before full info is known.
I am happy to potentially be part of something that could make a difference,especially given the fight that others went through to get herceptin approved.
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fluff - wow - you have been busy! I wondered where you were! I go for my last injections in about 6 weeks, then will follow shortly with the last blood work. Hard to believe we will be done - seems like yesterday we were starting! I too have that feeling of happiness to have participated in something that may help people in the future. The GP2 arm has been in the news a bit lately with all good stuff, so yay for that! Knowing that the AE37 vaccine may benefit a broader spectrum of patients is so excellent! I think they discovered that during your participation period too, I am proud of us for doing this!
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I know! Maybe they will let me do a phase III and get the stuff you got, lol. She did say that ae37 appears to help just not as much and she wasn't sure it will ever be marketed for high her2 folks because it might not be enough. Triple negs and low her2 tho looks really good.
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she went on to add that what they don't know is the role herceptin plays with the whole thing. For example, since most of the people in this trial who were her2 positive were highly positive and had herceptin, did herceptin make the difference in a non recurrence or did the Ae37 help to play a role. And there is a study that combines both gp2 and ae37 for ovarian cancer patients. So interesting.
I meet with my potential oncologist replacement tomorrow. This is one of the guys at my same place. I am assembling my list of questions to grill him with.
If you safe suggestions for post care, throw them my way!
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Good luck with the potential oncologist Fluffqueen, you do deserve another good one!
My questions for you and Special, is, did you guys feel any side effects at all?
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kathec - I get two injections to the leg each time and get a big welt that is raised and itchy in each injection location, for me the welt is about the size of a half dollar. This was worse when I was in the time period of getting this every three weeks. I also felt flu-like for about 24 hours from the evening of the injections on - but this was inconsistent.
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Agent 99- I don't know why she would think your sex life would be over, isn't it an individual and personal feeling. Everyone has different sex drives and hormones so if you have always had a good sex life with your husband I don't know why that would change. Yes, I agree with the dryness comment but like lago said there are gels and things that will help with that!
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Kthielen some people do suffer from vaginal atrophy after menopause. It can make sex quite painful. There are other issues too. I'm not going to lie and say I have the same drive as I did when I was 20, but not sure if I would want to have the same drive as when I was 20 either and I certainly didn't have the same drive as when I was 20 just before diagnosis either.
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