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You may be thinking of perjeta generic name istrastuzumabpertuzumab. It is another targeted therapy. -
Roses ex - I didn't want anyone to be confused, trastazumab is Herceptin, the drug name for Perjeta is pertuzumab.
Tonlee - Perjeta is another targeted therapy that is showing dramatic effect when given neoadjuvently, which is the current FDA approval for early stage BC. Some oncs have been able to get it adjuvently, but is the exception so far. Here is a blurb from the maker, and the trial info. The other trial is the Aphinity trial but I couldn't get the link to work on my phone:
http://m.perjeta.com/patient/neoadjuvant
http://www.esmo.org/Conferences/Past-Conferences/E...
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me culpa I'm blaming it on the new glasses progressive lens Maki g everything near and far look like a fish bowl.
Thanks Special K
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the acne is from the steroids. I went to my derm and got a script for retin a cream. Really helps. I got one period on taxol. Nothing since.
For those of you who are young like me and considering an oooph, my MO says ovaries do lots of good things in the body. She wants to do ovarian suppression with Lupron for me for two years, and then discuss. She strongly discouraged the oooph. I have an apt with my OB/gymn to discuss next week and get his opinion.
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I had an echo today because my heart function after 9 months of herceptin / perjeta had dropped from 68 to 53. They wanted to keep a closer watch on my heart. Well I have been a bit more active over the last month and my heart has actually improved by 2 points so I am cleared to finish the full year of treatment. God is good and answered the prayers for a rise in my numbers. Love, Jean
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rosesrx - no worries, hope the glasses settle down soon! I tried progressives a few years ago and could not get used to them. I have stayed with single vision reading glasses and I slide them down my nose and look over the top - very old school
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Tresjoli2, please let us know what your OB/GYN says--I am researching my options now and leaning towards an ooph, or a total hysterectomy. I don't want to take something that increases a risk of ovarian/uterine cancer, and AI's seem better for side effects. But I know that is a permanent decision with bone density and heart issues. I am a few months out from needing to make a decision, so I am very curious what others are thinking/learning.
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I was 100 on PR and ER. I did not realize so much about the different levels. These are just things you never expect to be educated about. I am not sure if these have any indication for recurrence or not. I have a bad feeling lately. I had a blood transfusion and my doctor had said I would feel better right away and that was 2 weeks ago...waiting still!
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tresjoli. Ive been on ova suppression for 3 years. I tried switching from tam to an AI but I couldnt tolerate them( tried Aromasin and Femara) my MO switched me bc of the results of the soft study. The thing about the study is it only was with women who had just finished treatment not years out like I am. She said it was up to me if I wanted to remove my ovaries or not. I chose not to because I'm just terrified of the long-term implications of that. I just stopped in the injections last month and I want to see if my periods return. I was diagnosed 42 and 46 almost 47 now.
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SK. I just returned my progressives!!! I felt nauseous when I was wearing them. So I do the same thing. The 'ol move your glasses right down your nose!!!!
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Tres,
I chose an Ooph because my periods came back with a bloody vengeance! lol And there is no way to tell if Tamoxifen is working. I wanted to keep the uterus to preserve the structural integrity of the lower abdomen, so no hyst. And I thought Tamoxifen was the big evil....until I had the Ooph and tried AIs. Ugh. Horrible horrible reaction. So I am still on Tamoxifen.

If I could do it ALL over, I would keep one ovary. Here's a little TMI but sex after an Ooph while on an anti-estrogen is HORRIBLE. Painful, bloody, etc. At least it is for me. And there is nothing under the sun to make it better. I've tried everything, prescription and non. That may not matter to you, but there was only one person on this board who mentioned it when I was making my decision. Therefore, I thought she might be an a unique situation.
I was also 95% ER+ so knowing what I know now, I think I could have some estrogen and it not hurt me a bit. For instance, my Onc wanted me to keep my ovaries and just keep having periods and NOT suppress the ovaries. He was confident Tamoxifen would do its job. (I, obviously, was skeptical.) Women go on to have babies etc after ER+ breast cancer.....with no recurrence.
So what does that mean? Looking back, I think while in the midst of it all, I got a little too wrapped up in the kitchen sink and forgot I have the rest of the house to live in. (haha...I bet you missed my horrible Metaphors here people! :P) Anyway, I wish I would have at least waited a year while on Lupron to really decide if no ovaries was quality living. Or at the very least kept a single ovary.
That's my experience. Pros, ovaries are gone no ER...maybe no recurrence. Negatives: sex sucks, skin gets old and papery, large percentage of muscle tone is lost, heart protection is lost, brain impact, etc.
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my MO pays a lot of attention to my long term quality of life, and In particular for me because we caught my cancer soooooo early (yay!) she doesn't want to over treat. She's always worried about over treatment. She said that tamoxifan carries the same risk of stroke as birth control pills, and that since I was on the pill for over 20 years my risk was very low. So for me, so will try tamox instead of an AI. She said she thinks I am very far away from menopause. She thoughtsex might be less painful on tamox than an AI. I have been warned that sex will be painful. Unfortunately she also warned my husband who is now terrified of hurting me and we are trying to work through that. I'm so glad we have Been together so long and married so long that we can have those kind of discussions...but In the back of his mind there's a tape playing that says he's hurting me...how do you deal with THAT?
My appt with my OB is next wed. He delivered both my children and handled both of my misscarriages and has been in my life for 15 years. I very much want his perspective on the oooph and will share next week.
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Tres,
Looks like you have a handle on it.
How do you deal with the "I don't want to hurt her?"
Honestly, devour him. You know what I mean. Get wild and cra cra. He'll forget.

Also, sex with Tamox and sex with an Ooph are two DIFFERENT experiences. Totally. I had sex on Tamoxifen just fine. Not so much with the Ooph.
In fact, I am looking in to premarin ... estrogen for the vagina!
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thanks TonLee for your honesty...that is exactly why I decided to "test drive" menopause with Lupron instead of an ooph. Plus even with the ovaries gone you still produce some estrogen(if very little) from the adrenal glands, fat etc? I think that's what I think I read anyway, someone correct me if Im wrong. I cant tolerate the AIs either, gave it my all but I was a wreck (vertigo/joint pain so bad I could barely walk) I know there is a slight statistical advantage but I cant live in extreme pain everyday. So I take my Tamox, stopped the shots and hopefully my ovaries have slowed down with age!
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I want to thank you all for the very honest and candid discussions on all of this!! It is sooooo helpful. I really like knowing all of this for when my big decisions have to be made so again thank you thank you thank you!
Now new question different topic. I was told to try a multiple vitamin by my nutritionist. Anyone have a good multiple vitamin to recommend? When you look at the shelf it is overwhelming geez! Thanks
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MMay, re: multi-vitamin . . . I'm a big fan of Garden of Life. I take the women's one-a-day, though there's also a three-a-day. Other good brands are New Chapter and MegaFood. They're all whole-food vitamins, so you're not mega-dosing yourself with things you might not need. . . with the added bonus that they're more digestible. (I was a vitamin/supplements buyer for a long time in another chapter of my life, but have no stake in one brand or another.)
Anyone have nosebleeds while on TCHP? Woke up this morning to a new surprise . . . Fortunately, it stopped after about five minutes, but MAN. Chemo is the gift that just keeps on giving.

BTW, you ladies are awesome. I love the frank discussions that occur here.
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Kate - I had DAILY nosebleeds while on TCHP, and they've continued 9 1/2 weeks PFC. They're common during chemo, but should resolve once your blood counts improve. I went to a head and neck surgeon yesterday, and she found I have an irritated blood vessel, so she cauterized it.
Her suggestions for nosebleeds: sit with head down, pinching the nostrils until it stops. Clean nose with a saline spray, and moisturize with Aquaphor 2 times a day.
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I too get them. They have so far never been more than frank blood when I wipe or gently blow my nose. I have been using saline a couple times a day and just purchase aquaphor yesterday to try as well. They do let up just in time for next big dose. The mo said if they get worse it or I can't stop the bleed go to ER. I also saw someone on here say that at about day 10 after her chemo she would start having some nose bleeds like clockwork. Youre right there is always something.
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Has anyone tried Hyalogyn for the vaginal dryness? Sloan Kettering is using it in a clinical trial. It is non estrogen, available online and has helped me some after using it for 3+ months. Also a lubricant is almost a necessity for any intimacy. Love, Jean
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Nose bleeds became pretty regular for me. I used a saline to help keep my nose moist. They were the worst at night. Who wants to sit up at 2 in the morning to try and stop your bleeding nose!?!
Re ooph. OS and an ooph have the same effect on your bones and heart. The difference is that if you decide to stop OS down the road, things should get better. I'm interested to see some of the suggestions by Gyns. Mine said ooph and hyst. I decided that removing the uterus was not for me. Seems to have too many uses. I'm now 43. Unless they decide to change their mind on OS for premenopausal women, I'll remove ovaries and tubes. My MO said they don't like to do OS for a long period of time. The problem for me is that I don't know when I'll hit natural menopause. Could be in a couple years, five years or even ten years. Painful sex? I haven't had a problem with that. Sure, things have been dry on occasion. I use astroglide when needed. I adopted the "use it or lose it" mentality. Even during chemo. My MO said my body will provide natural lubrication if I have sex more often. Not sure if that's true but my DH certainly isn't going to complain! I would assume OS and an ooph would have the same effect on my sex life. Please let me know if that's not true. I'm scheduled for surgery September 25th. AIs or Tamox? I've read stuff about women not metabolizing Tamox very well or it not being good for Her2+. Again, not sure if that's true. I haven't have any problems with Anastrozole (knock on wood). Tamoxifen does have a risk of uterine cancer...Although is is low. That is the only reason I considered removing my uterus. If I started having problems with an AI, I would go back to Tamoxifen.
Honestly, all these options suck!
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Momma,
I don't think your vagina has had enough time to atrophy. (Doesn't it sound like mummy? lol)
I also continued with the sex life even after the Ooph. But, as time wears on, the lack of estrogen causes the vagina to lose elasticity and shrink, well, um you get the picture. There's no getting around that. It's just not as accommodating as it used to be....
I slowly lost the ability to naturally lubricate, even when I orgasm. It's TMI I know, but no one told me that it will get drier and drier and less elastic the longer I go without estrogen. Which is why I woulda kept an ovary, just one and did Tamoxifen....but hindsight and all that.
Also, it seems to me that with OS a person might come off it for say 6 months while the um, vagina rebounds, and then start again. In theory anyway, it would take some time for atrophy to begin again. Almost like starting new.
This may seem like much ado about nothing, but honestly it is the longest most unpleasant SE for me personally.
Live and learn.
(And btw, I still have sex. It's just not as rowdy or often as it was even 18 months ago.)

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hercepton causes many things, rash for me at first, I am done chemo, but with each infusion I still get a slight rash on my face, almost a flush, like I was drinking. As for the nose bleeds had those, but of course no one mentioned the nose hair loss either, guess it wasn't important enough. I don't think it has grown back, but the runny nose is pretty much gone for now.
I chose doubl mastectomy to just get the mammary cells out of my body, didn't realize a second occurrence could come back on chest wall, so it's never out of your mind, just moves back a bit occasionally. No regrets on the mastectomy as I was rather large and couldn't lay on my tummy any longer, now I can, hubby was ok with it, whatever I wanted. As for er+ and pr+ I just learned from my surgeon the higher the numbers the better it is, except for her + that number is better lower. So I feel better, about the numbers but hate the whole Dx thing. Still get upset, even mad that this happened to me? Not good spiritually, guess I am a coward but it's something that will take me awhile to deal with, even though I don't get a choice, I have to remember that life is not fair, and this is my new life. Ok off the pity wagon, be well girls
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My MO doesn't want me taking any vitamins, and I'm fine with that. I eat a bowl of Total cereal, which has the RDA of essential vitamins, and I drink skim milk for extra calcium and Vitamin D. I also eat lots of vegetables and fruits, so I believe my nutrition is adequate to provide what I need. I am loath to put more of anything into my body!
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Kate,
I had nosebleeds for the first time in my life on Taxol/ herceptin, they stopped after. About 2 wks PFC... But boy, I hated having that just happen
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TonLee you wish you kept an ovary, I wished I had less than 10 nodes on the left taken. Hey we can't be perfect with every decision. But for all you know you really did do the right thing for you. I mean you are still NED and it's almost 5 years!
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True Lago.
And the reality is, I am still around to well, wow-chica-wow-wow. lol

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Yes you are!
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Has anyone created a list of plant estrogen/paraben free products? I am looking for lotion, facial cleanser, shampoo/conditioner, type products. Also, anyone have a soy free protein bar recommendation? Since I have had diarrhea from day 1, now day 18, I am avoiding all dairy--shakes, smoothies, etc.--and cannot find a soy free protein bar.
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Quest bars are soy free but they do have whey protein, so not good if you are trying to avoid all dairy. Larabar are soy and dairy free and you can usually find them easily - grocery store, Target, etc., or you can order them.
I would recommend using the Environmental Working Group's website to find cosmetics/lotions/shampoos. You can look by specific item or brand, or look at a category, like mascara, and they will be ranked best to worst. Here is a link:
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"The Surprising Reason Most People Get Cancer"
Part of the reason I don't drive myself crazy with diets, etc. I try to eat healthy but you have to live.
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