Starting Chemo September 2015; join us!
Comments
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What is a ooph?
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Hi SF! Sorry to welcome you to the mutants club.It looks like we have a similar diagnosis. I'm having 6-8 weeks of rads and then hopefully surgery in June. Reconstruction in 2017. Do you mind me asking how old you were at diagnosis?
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Oophorectomy is ovarian removal. They take the tubes too.
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Cajun - I'm 46. None of the women in my family (mother, grandmothers, numerous aunts) had breast or ovarian cancer, so my membership in the mutants club definitely came as a surprise.
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Anyone know how big of a predictor Ki67 is for recurrence? Mine is 50.
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Annie, having part of your body removed is a terribly personal decision. Ais are undoubtedly more effective but you pay the price in bone density and early menopause. What % ER+ are you? I am 99.
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hi
First dense dose of Taxol. In the books. No allergic reaction. The benedryl was strange. I was so sleepy then BANG! Woke up when they started the taxol. Not a fan on the 3 hr infusion. Hopefully minimal SE. I did ok in AC but this is a different beast.
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arista, let's hope not much. My ki67 is 99 but I was never told it was a big factor.
Sf, I have one case of ovarian and no breast, prostate, or melanoma. Very surprised as well. My brother is not a carrier.
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tiger, with no reaction, they might cut out the benadryl. I'm not getting it next time. Congrats on getting another one done!
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Found Ki67 here: http://www.breastcancer.org/symptoms/diagnosis/rate_grade
- Ki-67: Ki-67 is a protein in cells that increases as they prepare to divide into new cells. A staining process can measure the percentage of tumor cells that are positive for Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%.
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thanks Cajun. They listed all the reactions, I swear I felt them coming on but nope. Whew! No reaction cancer buddies
They said I could have reactions next time but after that I should be good.
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Yep, my understanding is that ki67 is more of a marker for aggressive cancer (which mine is) but not really recurrence. The scary thing is that if do have a recurrence, it will probably be mets.
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I'm not trying to live to 70 or 80. I just want to see my kids into adulthood.
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Looking at the stage IV board, it seems like mets is the next thing. So many started with stage II and III.
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Artista- so many have never had it reoccur too. Even if someone gets stage IV I know some have lived with it for years. One Co worker had lived with it successfully since 2000.
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Stage IV That's when you break out the big guns. Trails to get into and also immune therapy they are developing.
I'd ask your doc apt it anyways. Couldn't hurt to have a back up plan or double down on treatments.
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I have a hysterectomy scheduled December 28th. I am not excited about it. I have gotten some second opinions and its still a very hard decision. If I did not have a history and risk of ovarian cancer I would be more likely to go with Lupron for a year because it is reversible and the SOFT/TEXT study showed that many women quit AI. Permanent decisions are very difficult. Without other factors I would be comfortable finding out how my body felt on Lupron and AI. One thing I will say about the SOFT/TEXT study with Lupron there is still time to see how it plays out. I think they are still recording data on the participants and who knows they might decide that robbing a woman under 50 of estrogen is a really bad idea. On the opposite side if the risk of ovarian cancer is low then there is benefit to trying the AI without doing something permanent.
In my situation I have ovarian cancer family history( moms side very young sister), a bad gene( Dads side palb2), Two different kinds of breast cancer( one in each breast) and I am young(42). My MO said regardless he would want me on Arimidex because I am "not a round peg in a round hole". So its Lupron or OO/hysterectomy. I admit I am concerned about Arimidex and the nasty side effects.
I still am thinking about the hysterectomy vs oophrectomy. I consulted a gyn MO and he told me that stage one ovarian cancer is almost always found by accident. Its hard to not feel like I am making the decision out of fear. It will be years before they find out more about PALB2 or the other genes. My doctor said probably 10-20 years before we know my real risk for ovarian cancer if ever. Because my diagnosis is bilateral there really isn't even a study that directly applies to my situation. Its hard to make a decision that I feel I can be at peace with.
Trying to put a number on recurrence can drive me crazy. If a woman does Chemo she is probably higher risk or she wouldn't have done Chemo. It sucks but it is what it is. Being a BC feels like having a bounty on your head sometimes. There is always that shadow over your shoulder no matter how many years go by or how much a person tries to understand the treatment options.
I plan on spending some time now that I finished TCH trying to resolve this surgery. There are some other factors. One is right now I have a lot of support. This is a good time if I am going to have the surgery. My MO wanted me to have it 4 weeks after Chemo I think my risk of ovarian is 20% or something like that. .
I appreciate you guys talking about all of this. It helps keep me off the ledge so to speak.
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Lisa I wound up in the ER 2 weeks ago on a Friday night with a fever and start of a sinus infection. I'm pretty sure I got it from my neighbor. The dad had a nasty sinus infection and then the son was sick with a fever for a week. I drive him in a carpool and our kids are always together. DD who's 14 has been snotty for a few days but no bacterial infection. It's not just toddlers!
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I freaked hearing my KI 67 was 80% and that I was grade 3 --- but my MO said that such rapidly dividing cells are also the most sensitive to chemo. So fingers crossed, all the rest of you ladies with high numbers!
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Cajun my ER is 100% PR is 98%
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Southern..glad to hear you're doing better. That's all we can hope for these days, to be able to cope until its over.
I'm on day 3, post #2 Taxol infusion. Yesterday was great, riding the steroid high, I was able to accomplish quite a few things. Today the joint pain is settling in. So far, its manageable but I get to give myself that nasty Neulasta shot later this afternoon. I'm ready with the heavy duty narc med, just in case. I'd rather just sleep away the weekend than feel anything.
On a positive note, no neuropathy yet. After my first round, I had tingling on day 2 only then it went away. I'm hopeful.
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Holy joint pain, yesterday was bad. I could barely walk. Today, I'm only slightly creaky. Fingertips feel Ike they're asleep. If the poo fairy visits, I'm going to demand that she take her blasted hemorrhoids with her. Maybe I'm over the hump for the first round of Taxol? Today is our 17th anniversary, and we really want to go out tonight.
SC: a new day, indeed. Glad you're out of the hole and on the upswing.
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That is my understanding too. Tamoxifen and AI's are to suppress estrogen.
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having major crocodile skin issues. Here is what I did.
Brown sugar, coffee grounds, cinnamon, vanilla, olive oil, coconut oil, baking soda.
Scrubbed all my skin. Feel so much more human!
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Nice mix Annie! Will have to try I have some elephant skin going on. My left shoulder above my node removal, mostly.
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I just drove to my mailbox to put fam T-giving cards in the mail. It's 2 blocks away. And..............I went in my robe and slippers! No shame here! No cap on my balding head either!
Have a great weekend ladies! xo
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Day after round 1 of weekly Taxol and feeling good! Out and about with the family.
Arista, I've made some plans in case. I have a good friend in ministry who has promised to ensure that my kids are taught the gospel. My husband will sell the house, move where family is, and find a new church. We are going to work on paying down the mortgage. That said, I have a friend who was diagnosed stage 2 who had a stage 2 recurrence 6 years later, so it's not always mets, but I'm aware that the risk that I am dying is there... Today and every day. I want my life to be a testament to God's grace even so.
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happy anniversary Scotland!!!!
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Cute kids Cajun!
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exercise - what are the pros and cons of hysterectomy vs. ooph? AI's are going to suck big time but I will trade quality of life for a chance at raising my children any day.
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