TRIPLE POSITIVE GROUP
Comments
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I understand why not everyone does so but I have been very open about my cancer dx and the entire experience.. With everyone.
If someone looked at me funny... I would tell them ... Outright. Created some awkward moments but I think it made it easier overall .
I think.0 -
I started using the Minoxidil 3 weeks PFC. Decided before that was just a waste of time since I was still in the cycle. Just be sure to read directions. Some of those hair growing shampoos have Minoxidil in it. You don't want to use too much or you'll be growing a beard.
I too was private to a degree but people in my building knew so it got around. 2 years later I became this poster gal for ACS. Although not planned it got me out of the closet.0 -
the San Antonio Breast Cancer Symposium starts tomorrow. MSK tweeting there will be lots of news. Hope it's the good kind.0 -
lago: thanks for the shampoo advice
Ashla: I am excited for symposium news too. When I saw my MO this morning I told her to take good notes ; she is leaving tomorrow morning for TX.
Girls: I am getting better at telling people about my dx. Every day it has gotten easier . Blessings
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Girlstrong,
You are at the leading edge of the treatment regimen with your perjeta! Is it infused? How often do you get it? Any different. side effects they tell you to watch out for?0 -
Ashla, yes the perjeta is infused in my port just like Herceptin and all the other chemo meds were on. I am getting it once every 3 weeks (along with Herceptin and Taxotere). Side effects have been OK. I had a rash on my arms, trunk and hands after the first infusion. Not necessarily because if an allergic but probably because of side effects; one of the side effects of Perjeta is a rash. Luckily this was remedied with an oral steroid. If any of you happen to go on Perjeta, in my opinion, the side effects are minimal in comparison to the chemo side effects. Hope this helps.0 -
Nicky, I don't understand why you are wearing your hair so short! ;-) (shades from your trip home). It looks fabulous! And I know what you mean about curly...I'm struggling too, but thanks everyone for the compliments.
And Ashla, super cute! You go. Lago, you are right, this is so much easier and there are fun products to make it bend to our will!
To me, the hair loss wasn't such a big deal I guess, but I definitely hated the wig, and didn't like going out in buffs and hats. I didn't want pity. I worried a lot the first month after chemo ended (Feb or this year) because it just didn't seem to start growing at all. When it did, it came in almost all black with some grey in the front. I used have chestnut brown hair, but not anymore. Weird.
I'm with Lago, you gals are all so beautiful even with mighty short hair, so appreciate it and have fun. In the meantime, my stylist gifted me with a Redkin product called "17". It is kind of a heavy styling paste, but meant for older, wiser hair. I love it and use it all the time to make my hair at least be silly some days. Bet you can buy it on eBay.
Christine, keep taking the biotin. It's cheap. I used Rogaine for about 6 months (after losing a ton of hair during a stressful academic time) and it didn't work until that very last day (day 180). I was so ready to give up, but after that, I eventually had my old hair back. My thinking is "under controlled conditions, given all variables considered, hair will do what it damn well pleases."0 -
I remember when my hair came in ant it started to grow I was getting chemo and the nurse cam over and had gel on her hands and spiked all of my hair, she did it cute too. I looked like a cool old lady. LOL
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pbrain, I like the new pic. Everyone looks so good. Girls strong don't know if I said Hi. But Hi. LOL. Congrats on finishing and good luck on the rest of the things.
Is it just me or is it somehow easier to accidently drop threads lately? I've dropped three of the last week. Weird.
Only about a week til my exchange surgery. Next wed. Starting to freak a bit. Op #7 on lefty. #2 on right. Stopped taking my anti inflammatory and aspirin. So will now be hurting walking til surgery. Sigh. But i have to keep my goal in mind. Yep. PERKY! LOL
Much love to all.0 -
Oh moon I don't have a clue how u gals go thru all these surgeries, u are all so good with it. But moon u know u'll be perky so that's the goal and u'r going to be fine. U perkytobe woman.
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OMG...you all look FABULOUS! Love the pics! Love the NED anniversaries!
My hair started growing....in spots its about 1/4 inch...YAY.....its really dark.....my "old" hair was a lighter brown... I think my Lebonese traits are showing.
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In the beginning, I told only friends and family about my diagnoses, and because it was during the summer I wasn't really seeing many of the other people whose paths cross with mine regularly - the school mums, people at my sons' sports clubs, daughters dance school etc. by the time everything started up again I was already wearing my wig and most people just assumed that I'd changed my hairstyle. I let them assume! But if anyone asked directly I gave them an honest answer. This summer, I took my wig off, so for the new school year it was me and my (very!) short hair and people started asking questions. The hardest part is explaining that I'm still in active treatment. People don't get the whole stage IV thing.
Nicky0 -
by the way - I can sound mean in French too when necessary!!!!
Nicky0 -
I have a suggestion, but not sure who to make it to or where to make it?
The suggestion: Can we put this hugely popular Triple Positive subtopic one level higher up in this forum eg at the same level as the Triple Negative subtopic? OK technically Triple Positive is a subset of HER pos, but given the number of posts and posters her, why can't we go up to the same level?
It would allow us to have separate threads for different discussions rather than everything piled on top of each other (which means that some issues/questions get lost/swamped by other discussions).
This might happen to this suggestion as well, but I've given it a try.0 -
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Hi Blue Fox--I'm sorry I don't get what u mean, but someone will. So be patient.
Nicky I bet it still sounds beautiful even if u'r not to happy.
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bluefox I actually like it all together. Now that I'm over 3 years out I don't follow as many threads. I don't have time so I like this thread full of info.
Nicky I didn't understand stage IV breast cancer till I got diagnosed. My DH even thought early stage breast cancer meant you get treatment and you are cured… had to explain "well maybe but it can come back even 10-20 years later." I know I've educated a lot of people since I've been diagnosed.0 -
Camille, it might sound beautiful, but watch out all the same!!!
Iago, I had no idea myself what stage IV meant before dx - I got thrown in at the deep end!! It's just that although I've come to terms with my dx, it can be difficult to explain over and over what it means. People got it when I was having chemo, but they find it hard to comprehend that I still go to the clinic every 3 weeks; and always will. I know it's their problem, not mine, but knowing that this is how it'll always be can be a bit depressing!
Anyhow, on a brighter note, that's why coming here is so nice. I don't have to explain anything. Thanks ladies!!😊
Nicky0 -
The same thing for me, I had 6 chemo , even though my chemo over but I still have Herceptin every 3weeks for yr. some of my friends , family and in law didnt understand about breast cancer, unless they been thru it. They would say "oh my co worker only had 4 chemo n why you had 6". The dont understand that we all had diff types of tumors n treatments. So hard to explain to them. since now my chemo is done they think i am cured? I told them so hard to explain and ask them to read or search online. LOL
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soriya you just have to explain that breast cancer is more than just one disease. Kinda like Diabetes Type I or Type II… except with breast cancer there are many more types.
NickyJ I always look at it as an opportunity to educate. I know I convinced a few women to go get their mammograms after talking to me.0 -
Iago, I do the same, I even accompanied 2 of my friends to get their first mammograms recently!
I understand that its hard for people to take in, and in general I don't mind the questions. I feel horrible when I tell them though. To explain a dx of straight in at stage IV that was found through a fractured bone scares the hell out of people!
Nicky0 -
sometime i rather not talk about my cancer when i see them because they always say "you are so young" the minutes i heard that tears rolling down my cheeks. i cant help it, but cry infront of them.
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NickyJ I know when I tell people how big my tumor was (My old boobs were small) they ask if I got mammograms. Scared the hell out of them when I tell them yes, and even my (former) gyno didn't feel the 6.5cm lump in my breast. Then I educated them about dense breast tissue and how a tumor can form in the posterior region… and your mammogram is only as good as the radiologist reading it.
soriya123 you're just not ready to talk about it yet. It's still such a shock.0 -
ATTENTION CHICAGO AREA GIRLS
Women recently diagnosed with breast cancer and those without in the Chicago, Illinois Metropolitain Area - We need you!
We have been saying that we need to look in new places for the cause of breast cancer. This study does just that. The researchers are comparing differences between the intestinal bacteria of women who were diagnosed with breast cancer within the last 5 years and those who have never had breast cancer. They are also studying the intestinal bacteria of women who have not been diagnosed with breast cancer and have a first-degree relative (mother, daughter, or sister) WITH breast cancer.
Why are they studying intestinal bacteria to learn about breast cancer? Well, as you may know, exposure to estrogen has been shown to increase breast cancer risk. This estrogen and other female hormones are absorbed through the intestinal tract, and for that absorption to occur bacteria must be present in the intestines. The researchers think that these bacteria and the systems they use to metabolize female hormones may hold clues as to why certain women develop breast cancer and others do not.
Army of Women members have already helped these researchers conduct a study about intestinal bacteria and breast cancer. If you take part in this study, you will need to provide stool and blood samples and complete a packet of questionnaires.
Not the right study for you? We still need your help! You can still contribute by sending this e-blast to friends, family members, and any other women you know who might want to take part.WHAT’S THE STUDY ABOUT?
The purpose of this study is to find out what types of bacteria are found in the intestines and how these bacteria metabolize estrogen and other female hormones. The researchers are comparing the bacteria found in women who have never had breast cancer, women who have been diagnosed with breast cancer within the last 5 years, and women who have never had breast cancer but who have a first-degree relative WITH breast cancer.WHAT’S INVOLVED?
If you join the Breast Cancer Microbiota Study you will be contacted by the research team to answer questions about your health history. If you are eligible for the study and decide to participate, you will be asked to complete a packet of study questionnaires about your health, smoking and alcohol consumption, physical activity, and family health; a gastrointestinal (GI) symptom checklist; and a breast cancer risk factor questionnaire. You will receive and return all questionnaires in the mail (at no cost to you). You will also be asked to complete an online diet history questionnaire (the research team will send you the log-in information). Additionally, the researchers will request your permission to access your medical records.
You will be asked to have blood drawn from a vein in your arm (about 3 tablespoons). If you live in Illinois, outside of Chicago you will be asked to go to one of the participating Quest Diagnostics locations for blood collection. The research team will provide you with a list of Quest Diagnostic locations to choose from. If you go to one of the participating Quest Diagnostic locations for your blood collection, there will be no cost to you and the research team will mail everything you will need, including instructions for making an appointment and blood collection tubes. Quest Diagnostics will ship your blood samples to the researchers.
You will also be asked to provide two stool samples that you will collect from home. Samples should be collected approximately 7 days apart. The researchers will mail you a stool collection kit, including instructions for collection, collection and storage containers, and all supplies to return it all to the researchers. You can return the kit to Rush University Medical Center or in the mail (at no cost to you).
You will also be contacted 2 years after the study is completed for a follow-up phone call.WHO IS CONDUCTING THE STUDY?
Ece Mutlu, M.D., at Rush University Medical Center, Chicago, IllinoisWHERE?
Rush University Medical Center, Chicago, Illinois and participating Quest Diagnostics locations in the Chicago metropolitan area.WHO CAN PARTICIPATE?
You can join the Breast Cancer Microbiota Study if you match ALL of these MAIN categories:
o You are a woman between the ages of 30 - 80.
o You have had a mammogram within the last 9 months.
o You have NOT had a serious illness requiring immediate hospitalization in the last month.
o You have NOT been diagnosed with a gastrointestinal disease (hemorrhoids or hiatal hernial are OK).
o You do NOT have liver, kidney, or lung disease or heart failure.
o You do NOT have human immunodeficiency virus (HIV).
o You have NOT received an organ transplant.
o You have NOT taken immunosuppressive medications or antibiotics within 3 months of participating in the study.
o You have NOT received chemotherapy or radiation treatment within 1 month of participating in the study.
o You do NOT have a history of colonic disease such as colon cancer or inflammatory bowel disease.
o You are NOT pregnant or breastfeeding.
o You are able to go to Rush Medical Center in Chicago Illinois, OR participating Quest Diagnostic locations in the Chicago, Illinois metropolitan area (specific locations will be provided by the research team after you RSVP for the study).
The researchers are recruiting for two groups. In order to participate in this study:
o You have to have been diagnosed with breast cancer (any stage, including DCIS and metastatic disease) within the last 5 years.
OR
o You MUST match ALL of these categories in order to be eligible:
- You do NOT have a personal history of breast cancer.
- You do NOT have a first degree female relative (mother, sister or daughter) who was diagnosed with breast cancer.
- You had a mammogram with abnormalities but benign findings within the last 5 years. (Mammogram Codes 3 or 4).
After you RSVP, the research team will ask you additional questions to be sure that
this study is a right fit for you.
Yes, Sign Me Up
No Thanks
Recruit a Friend
DR. SUSAN LOVE RESEARCH FOUNDATION
2811 Wilshire Boulevard, Suite 500, Santa Monica, California 90403
310.828.0060 | studies@armyofwomen.org
The Dr. Susan Love Research Foundation is a nonprofit, tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law.
This email was sent by:
Army of Women | 2811 Wilshire Blvd. | Suite 500 | Santa Monica | CA | 904030 -
sorry had to delete post. Army of Women is recruiting breast cancer survivors in the Chicago area for a research project studying gut bacteria and breast cancer . Cannot link on this device.0 -
Ashla thanks! Nick it would scare any person with a brain in their head! But it is what it is. And maybe we will all hear less of that's good they caught it small you're cured right! Even my MO did not believe I had a 1.6 tumor in my "good" breast. I knew nothing about Her2 before i was dx. Now i wonder if it's what my Mom had. My SIL was dx with stage 4 about the same time as I was dx with stage 1. Hers is a recurrence after lx and rads. So i will always worry a bit. Much love.0 -
I hated my first hair loss. My the third time it was just another event in the cancer train. I bought 2 wigs and gave them away. Made me itch and irritable. And God knows I do NOT need to be more irritable. Hated losing my brows and lashes. I am pale as a cuke and need color bad. I wore hats and scarves. And told everyone. Still do-but is still obvious. Have male pattern baldness. Missing parts that do not grow back and chest wall looks like a play ground for Edward Scissorhands.
I finished radiation in March. My chest and ribs are still tender. Anyone else?0 -
Moon, fabulous picture! You look beautiful and very healthy!
Susan, I finished radiation in May and still have a lot of pain in my breast. My RO told me that was normal, and my BS told me I'd ache and hurt for awhile because of how much tissue she removed. I was a lumpectomy, so not sure if that applies, but I think pain after radiation is common for a long while.
I finished my last Herceptin yesterday. I'm done! Oh, of course, except with the arimidex. But maybe I can finally make the GI tract calm and happy
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Hugs PBrain! Happy for you. I hope your GI tract settles down too. But you had a heck of a time have they been checking your magnesium levels? Or did they stop after chemo. I still need supplemental mag. And on average every 4 to 6 months an infusion of mag. And this after taking supplements of 4 tablets a day. He wanted me at 6 but the big D NEVER went away so backed off to 4. Now on Slo-mag release mag and still need 4 a day but I now have more notice and don't have to do laundry as often. LOL so I do know those GI issues can stay around a long time. Right now I'm at level 8 of pain because they want me off my anti inflammatorys for my exchange sx. And I hurt in every joint. But my sx was moved up to this Friday so I'll be able to start using it in a week and will have big pain pills to help. Geeze I am whining again! Sorry! Oh and pbrain my DMIL had pain from rads that lasted a while. She lived 35 years after her rads with no other issues till she was over 85. So hope that is encouraging.
Susanhg123, notice I have my head tipped back in my pic? That's because the front of my head is so thin in male pattern baldness. LOL. It ain't coming back. On the other hand I don't have gray hair except for a hair or two that pop up occasionalt. My Mom passed at 76 and her hair just had a white streak. My Dad at 88 and he was only salt and pepper. And still had mist of his hair. It is what it is. I know dome ladies use minoxidil but not really interested in starting. Too much effort. LOL
Ashla, I want to check out that study. I'm only 2 hours from Chicago. It's doable.
. Much love to all.0 -
Pbrain: Congrats on the last Herceptin! Mine is the day after Christmas. Can't wait!0 -
Susan: I am 7 no post treatment and my hair is worrying me. I still have bald spots and my eyebrows are still completely gone. I'm going to ask my MO next visit what he thinks. I'm hoping its the Herceptin but when I see the other girls pics that are just finishing up w/ it too and their hair is coming in nicely, I'm worried about mine!0
