TRIPLE POSITIVE GROUP
Comments
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For what its worth, I found the AC to be more tolerable than the Taxotere. I had neuropathy on THP among many other side effects, but started accupuncture (at my MO's suggestion) and it went away. I had an allergic reaction to the Taxotere as well as spiked a fever after almost every round. AC made my stomach a little rocky and I had a lot of fatigue, but my heart was healthy going in and hoping there aren't longer term effects. Otherwise it wasn't so bad. The AC also really did work, I had an MRI between my two treatments and after the last one (AC) so I'm glad I did both.
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Thank you SpecialK, I am really trying to do an assessment here , still await a call from another doctor and have discussed it today with my cancer rehab nurse who promised to talk to the oncologist about giving me more explanation regarding the both treatments before we take a decision, I will go through with my Taxol on Monday and then they want an answer by Tuesday.
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Hi toughcookie, the flashings just occur in the corner of the eye, and my are often happen in the bathroom, somehow the type of light we have there is causing them but they even happen at night when it is dark. They last a less than half second and I recall I had them before my diagnosis too. The ophthalmologist says that it happens to people when they grow older, I am nearsighted too and wear glasses but am about under -3 on both eyes. In the booklet I received from the eye clinic it says that when you suddenly see the grey area in the corner of your eye so that you vision field gets smaller when you are looking at the big picture then you need to rush to the hospital, because it means that the fluid from the vitreous body has leaked and the leakage has to be fixed by laser. Before that they cannot do anything. They also say that you cannot be doing heavy exercises, no heavy lifting, no stress and I was like ok how can we with our diagnosis manage that? I get chemo that is hard on the whole body and our seeing is one of the most important yet fragile senses. We get 80% of all information through it and 50% of all energy our body produces is going to maintain the sight. We are also supposed to exercise as much or even more than healthy people do. So this retina detachment is another problem of mine why I am hesitant regarding an anthracycline.
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Thank you all for your replies regarding neuropathy. I am going to do the Taxol and Herceptin. I will take the B vitamins for sure. Will look into the ice for my hands and feet. Getting my port next week, then the fun begins again.
I moved to Florida two years ago, originally from NJ. My friend from my hometown was diagnosed at 34 with BC in 1995. She was diagnosed again, this July, 22 years later. Me 18 years later. I find this so bizarre. Unlucky, luck of the draw. May we all remain cancer free
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KimCee,
I would encourage you ask for a prescription vitamin B. Here is mine: https://www.webmd.com/drugs/2/drug-77966/folbee-oral/details
I am convinced I had little neuropathy because I was already taking this Rx and continued it. Of course, no one my Oncology Team agrees with that! LOL.
Vicky
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Hi KimCee, is your tumor exactly 1 cm or larger? I am doing weekly Taxol and Herceptin but evaluating adding another chemo, you saw my posts, it is all over the boards now.
Cherr
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Thank you Vicky... I will definitely do the Rx vitamin B.
Cherr...my tumor was 1.5cm... I have read so much but will check your posts out now. Thank you too
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I asked my Oncologist about the tumor marker test and she said they only do them for Stage IV. They also only do scans if you present with symptoms lasting over 2 months. She said they have proven that there is no advantage to yearly scans as the outcome and treatment end up being the same. There doesn't seem to be any advantage except you know earlier that it has spread, but that is not reason enough. This ASTOUNDS me. I had PET and MRI at diagnosis and again after I finished chemo but nothing since then. It is so hard to think that the only monitoring they are doing is a 3 month clinical exam. Why did we fight so hard to then get left in limbo. She said my risk of recurrence is in the single digits (having completed chemo, complete metabolic response, BMX, radiation, Herceptin and Tamoxifen) but if it does come back as HER2+ it is usually in the first 3.5 years.
I guess I am going to have to figure out how to live with this constant worry that it will come back.
DizzyGirl
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Hi KimCee,
I replied to you already. My tumor is exactly same size but is of higher grade and Ki is double as high as yours.
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DizzyGirl,
I still get mammos, so there's that. I'm still working full time and have high maintenance children -- I think keeping busy keeps the worry at bay. It is what it is.
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dizzy - your oncologist is stating what he/she does as far as tumor markers and scans - this is not universal. I have had multiple tumor markers each year - and I am in year 7 from diagnosis at stage IIB, and have also had scans - some based on time, some on symptoms. My oncologist does not require two months of a symptom before scanning. He will order tests and scans immediately when notified of an issue. It is my personal opinion that the idea of "if you progress to stage IV it doesn't make any difference" is outdated thinking. Reducing tumor burden, innovative surgical and radiation techniques, new drug combos all could mean a longer survival, and finding something earlier may mean you have more options. When I read about newly diagnosed people looking for an oncologist and asking us what should they be asking about, I always advise them to determine how they will be followed after treatment is over. You are far from alone in your dissatisfaction with this aspect of your care.
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DizzyGirl ...
Can you change Oncologist? Maybe get someone that thinks more like you do or at least does what you want. As much as I complain about mine when push comes to shove he will run the tests that I want.
KimCee ...
Glad you will get Rx. Start immediately b/cI think the vitamin is already in your body working. But I am not an MD. I do have some common sense. LOL
Vicky
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hap - part of the problem is that you most likely went to two NCI centers or major med centers - they are hamstrung by the policies that they have to adhere to for retention of their NCI creds. They tend to be inflexible and have a one size fits all type of approach. That is one of the issues I have with this type of accreditation - they have limitations based on what their accrediting bodies tell them is the proper policy. I am seen in a private oncology practice, have many friends treated in the same practice - and we all live 10 miles from the only NCI center in the state of Florida. This is why we don't go there for breast cancer treatment. My oncologist has the freedom to order whatever he deems appropriate and my insurance has covered every test and scan in full.
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I'm Canadian, and here at our cancer centre, we don't get scans unless there are symptoms. No tumour marker tests. When I asked her about this (my MO), she said this is "standard of care". According to that standard of care, my next breast U/S is in May, one year from the last. I am seeing her next week and will tell her that I want two per year.
Like you said, SpecialK, I find it ridiculous that they say there is no difference. I have read that absolutely there is a difference, especially in the bones which can break! It makes zero sense to me.
DizzyGirl, like you (and we have a similar diagnosis), I had complete response. I'm very interested in knowing what other oncologists say about this. I've heard a couple others state that recurrence is low (like 10 percent chance), but that's not what studies say. So I find it curious that practicing oncologists and surgeons are saying this, when journals are not saying this. I prefer what your oncologist said, of course! So if you have more to share on that, I'd be interested. And like you and all others, I don't know know how to move forward in this fear. Some days I distract myself (I have kids also, Elaine) through family and volunteer work. There inevitably comes that dark and silent part inside that faces this as I can only keep it at bay for so long;I shake in fear. But I take hope from other veterans on this site who say that the fear does start to recede somewhat
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Hapb - so sorry to hear you're in so much pain from the AI. I hope your MO has a better option for you. You are a fighter with everything you have been through and will get through this too!
Tres, I hope the counseling helps. A difficult side effect for sure that causes added stress. So sorry you're going through this.
Julie24, sending prayers for a quick recovery from your knee surgery.
Elaine, I feel like you most days i.e. it is what it is and keeping busy distracts me from worry. But then I'll have a stretch where I lose my energy, positivity and am just plain grumpy. AI side effects or worry about recurrence, who knows? I am getting frustrated with the roller coaster of emotions so I think it's time to get professional help. I hate to be a whiner, thanks for listening
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I hear you, Hapb. I had this tshirt company pop up on my Facebook page promoting these images with phraseology and Disney branding - for breast cancer. People were writing saying "how about this other cancer?" And they'd immediately reply "we'll make it for you". They were completely using the Disney brand to exploit the whole breast cancer thing and every other cancer to turn a buck (yes, using Mickey). I wanted to vomit. I reported them to the legal team at Disney.
But honestly, I am sick of seeing "Fight like a Girl". I know this heartens some women going through treatment, so I support whatever approach they need. But I just can't stand it. What does that mean, fight like a girl??!! We are fighting because we're human and we have to! I too think all the pink and all the pretty/trendy products, an all these catch phrases are diminishing the realities of going through all this.
Yes, I just went on a rant. Sorry
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deni,
Have you thought about an anti-depressant? Celexa has done wonders for me.
I think one reason that I don't worry much about recurrence is that I have more immediate fears. My sons (who have autism) are bigger and stronger than me -- and aggressive. They have attacked me while driving, and one severely beat me up when I was recovering from my lumpectomy. He has since been placed on more effective medications, but even today (home for Fall Break), he had at least three melt-downs where he was "punchy" and "bitey." (I keep a baseball bat by my side when I'm alone with them.) I don't want any pity, but I do think that my fears of wrecking with them in the car, punching and scratching me, have numbed me in some ways.
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Deni, this is the epitome of emotional roller coaster! I was reluctant to seek out a therapist because I "felt" like I should be able to handle it. You are right HapB, we hold ourselves to a high standard.
If any of us have a sense that we would benefit from professional help and have access to it, go for it! If not now, when? I've been seeing a therapist since midway through my chemo and it has helped me immensely. Your medical team may be able to direct you to a therapist who specializes in women's mental health. Be good to yourselves!
Hugs from Colorado!
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HapB,
Yes, I have looked into residential placement, but the nearest place had to close two years ago because of state budget cuts. And, that place didn't have a sterling reputation (unaccounted for deaths, etc). I have recently been collecting applications for group homes, which they can move to when they turn eighteen. But, they can stay in public school until they are 21, so we might make the move after they graduate. My husband and I are very blessed to have jobs with flexible schedules, and my daughter is just 45 minutes away at college. There is strength in numbers; usually two of us manage them.
Most of their aggression is a product of puberty. Hopefully, they will be calmer as they get older. 95% of the time I feel safe with them. It's just that awful drive to school in the morning.
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wow, some of your posts (I am speaking to many of you) are so relatable. Elaine, my heart goes out to you. My youngest of 3 sons is on the spectrum. He lives with me and is 21. He is very sweet but I support him and it is not easy. No help as he supposedly is not disabled, despite many diagnoses and lots of meds. He was bullied throughout school and they would not remove the bully! I had to switch my son out of a school he loved!
As far as living in fear. I promise most of you, it will go away. After about 5 years, I no longer visited the posts. I had developed my friendships and kept in touch with those via text, Facebook, etc. it does get better. Whamo, and here we are. These sites are our lifeline and support.
Many of you may disagree with me but I never give money to breast cancer anymore. I feel like most of the donations go to cups, hats, Mickey paraphernalia, fight like a girl stuff. I do give to the walks. Maybe I am crazy but that is what I think.
As far as emotional help? I so agree with that. Positive attitude is so important. Unfortunately, I am not always there
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ElaineTherese and KimCee, the only thing I can say is that you are the living embodiment of grace under pressure, dealing with your home life and still finding the time to share and encourage others here. Thank you
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KimCee,
Ugh, about the state not recognizing that your son has a disability! It's somewhat easier with my sons, because they have intellectual disabilities. They should be able to qualify for SSI and later Medicaid, once they're 26 and no longer on my husband's insurance. However, we are unlikely to get much help once they age out of school. Our state has a 10+ year waiting list for transition services for young people with disabilities, and with recent state budget cuts, I believe it has gotten even longer. I put the boys on the waiting list when they were 10, but I'm not holding my breath. That's why I'm researching group homes.
Yeah, I don't give money to most breast cancer charities, either. But, I do participate in raffles at my local breast care center because the money goes to women who need help paying for their treatment.
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ElaineTherese, I red your post, I am truly sorry. This is what you have to deal with, how old are your boys? Do you get any help at home with them, this cannot be easy to be afraid of them. I mean they cannot be hold accountable for what they do either. I can just imagine how hard it must be and while you also are dealing with this diagnosis.
KimCee, it is the same here, if a child gets bullied they do not remove a bully, one has to find a new school instead. Never could understand it.
Cherry
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KimCee, I know you talk from experience but five years is a long time, sometimes I feel I am never getting my life back, I am still coping with my diagnosis like we all are, and am so paranoid. I cannot look at myself at the mirror, I look dreadful. Women on the chemo thread are posting their pictures in the wigs looking cute, really looking good, and I am just going in a hat, always looking down, a youngest one in the waiting room. This is one of the reasons I hang here for support and reassurance that things will get better.
Cherry
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Hi Cherry!
My sons just turned 15. My husband is a huge help, and we pay my daughter to help out on the weekends and in the summer. She came home this Wednesday and took the youngest to the movies. Then, she took the oldest for a walk in the mall, which he really enjoys. She earned every penny. I feel so blessed to have such a devoted husband and daughter, but my sons will have to learn to live without us at some point, so we have to work toward their independence.
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Suburbs, thank you for such a compliment. What part of PA are you in? I lived in NEPA for 10 years.
I understand Cherry. I do not like to see my reflection in the mirror and have not lost my hair yet. I for one look awful in any wig but have to wear one for work. I wing it in hats the rest of the time. 5 years is a long time. But after being diagnosed a second time, it seems as though 18 years flew by. I am not looking forward to doing this alone this time around. Ex husband was extremely supportive and helpful last time. Not having to work last time was priceless
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ElaineTherese, I have greatest respect for people who face challenges like this, 15 years old they can be hard to tackle, it is great you have your daugher around for help. About them learning to be on their own at some point, well, everybody here occasionally thought of it. When I got diagnosed my greatest fear was and still is to leave small child behind me, the cruelty of this possibility is unbearable and poisons my life. Ok, I am on the low side today again. All strenght to you. Cherry
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KimCee, I am on sick leave but working 25% from home, brings some normalcy into my life without getting tired or showing up at work. Other than that I go to the treatments, appointments and grocery, some walks in in the forest, but the marital life, I don’t know, I am just waiting for the signs when it will start to ramble, because it takes toll on the family and I believe such thing can either make the bound stronger or make it fall apart. I mean I understand if it wouldn’t work for us, it is hard
Cherry
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Thank you all so much for the support, I so needed it! My OBGYN had me on Fluoxetine (mild anti-depressant) for mood swings during menopause. It helped greatly so I think it's time for me to get back on something. I agree we should use the resources available- medicine and therapy- to lessen the worry and anxiety.
You all continue to amaze me with your strength and resilience. Elaine you are in a tough position and I admire your commitment to your sons. This demonstrates what a wonderful mother and person you are! Hapb is right, as women we hold ourselves to high standards and feel we have to smile and keep going no matter what. BC is a big deal and it does appear there is a misconception that it is 100% curable. People are ignorant to the fact that there are sub types of BC and we're all at risk of recurrence. It's not their fault; they just don't know any better. This misconception is part of my struggle as most friends and family think "I'm all done" with cancer. They don't understand the daily battle with fatigue, pain, body image, SEs, etc.
I do not support any of the BC or other cancer organizations as I think it's a money making scheme. I prefer to donate my time and money to organizations where I can actually see results.
Cherry and KimCee, I can understand your feelings regarding body image. While my body certainly does not look good these days and the hair I do have is scary at best, I tell myself that this is part of God's plan and my self worth is not dependent on how I look. Don't get me wrong, I still cringe when I look in the mirror but then I get over it and move on. Some days it is easier than others but I'm trying to keep that off my anxiety plate.0 -
Fundraising to further sustain a bureaucracy like Komen, or just plain profiting by selling a pink product in October with a fraction of a penny going to a legit organizations has been going on for decades. Until one is diagnosed it easy to be complacent, or unaware, of the issue. I donate directly to research organizations, and if I am asked in person to donate at the grocery store, or the mall, or wherever, I ask enough questions about where the money goes that they are then sorry they asked. There is enough ignorance and misleading information out there that I feel remiss if I don't educate when the opportunity presents itself.
I suggest that if you are unhappy about what happens during Pinktober that you take a look at this organization.
My first pink October happened just 3 days after I was diagnosed - it felt relentless and cruel - pink was everywhere. I have found that over the years since diagnosis there is less overt pinkness than before, but the underlying issue remains. The public has been fooled into thinking breast cancer is preventable and curable, or manageable, and that by purchasing that pink product they are helping.
Something else that is important - there is a documentary film called Pink Ribbons, Inc that is a good examination of how this came to be.
http://m.imdb.com/title/tt2035599/
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