Calling all TNs
Comments
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I love the black shirt with Pink writing. I would buy a few, I know my friend and her daughter would wear them as well.
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I have a black shirt with pink writing that says "I fought like a girl and won" - it's got pink boxing gloves on it.
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Thanks Heather! Now I just have to convince my husband! He has never been interested in New York, but he knows I am. I guess if he won't go, I can always go with my 2 best friends. One's brother lives in Mahattan and we can stay there. I may just get to go yet!!
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I had a very brief conversation with my MO last week about recurrance and what changes I can make to keep this stupid BC from coming back. She mentioned something about limiting Phthalates. I just googled Phthalates and breast cancer - turns out that there is actually some research/link between them and ER-
Anyone else hear of this? Phthalates are scary!! They're in everything.
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Count me in on a shirt or two - my family and friends too! I agree that the funds should go to helping women with financial difficulties. I've been reading posts from a young woman (stage IV) who could use that kind of assistance.
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Laura Jane - so happy you were able to spend time with your son.
Heidi - Love your animal posts!
Count me in for some shirts!
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Tifj, you know a girls weekend just might be more fun anyway!
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LuvRVing, I'm toying with the idea of a small tattoo along the lines of the pink boxing gloves, in fact so is my husband. We currently each have one. I have a small one on my hip that no one sees and my husband has a huge family crest on his arm that everyone sees.
I think if I get another, I would choose another inconspicuous place.
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Good afternoon ladies. I had a great time with my son last night. We stayed up till 2am watching movies and just talking. The most important thing that happened was that we really got to talk. Lots of laughter and tears. I found out that his main reason for staying away is he's so afraid he will break down in front of me and he wants to appear strong so that I can lean on him. He said that when he is with his friends he doesnt have to hold back his tears and he can talk to them freely. I think it was so good for him to be able to cry in front of me and me telling him it's ok. He's been holding his emotions in for too long in front of me. Even though he's 18 he was and always will be my sweet little boy and my daughter will always be my sweet little girl and I'm fighting with all I have to be here for them.
Tifj- I just love NY. There are lots of fun things to do that are free or cost very little. I love visiting the art galleries and you can get great deals on lunch menus at some posh restaurants. The off off off broadway shows can be a lot of fun and cheap too. Oh just tons of stuff. I hope you go and have a fabulous time. I've gone by myself many times and had a blast and I don't think you can beat shopping with girlfriends.
Titan- my new man friend sent me a text yesterday I want to share with you. He's a Buddhist but I think it's appropriate thinking for all of us. " Plan for the future, learn from the past, but live in the present. One day at a time" so girlfriend, plan your celebration and enjoy doing it today!
Inmate- pink makes me nauseous too! I mean " what has pink done for me, lately? I think the NW Hope is wonderful. I wish every state had something like that. I remember when several of the chemos I've been on let alone not having the energy to cook anything it would have been so nice to have someone deliver some homemade soup. This second time around though I ask my friends to please help me and they've come through. I feel so sad for the women out there going through this that don't have anyone. I'm talking GOOD healthy homemade soup not the canned stuff. Maybe when I kick this I could try and work on that locally. Count me in on some shirts too. Anxious to see some more creative ideas.
CharB22- thanks for sharing. Indeed scary stuff. I just googled it. Even butter? Wow!
I hope everyone has a good day. I woke up feeling so happy in my heart today. Yup! Feeling very bi-polar but I'll hold on to this up side as long as I can.0 -
So glad you and your son were able to have a heart to heart Laurajane. What a sweet and loving boy you have. Your children really are blessings.
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Just Googled "Phthalates".
Guess we're all going to die...... someday
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Does anyone have any experience with using mushrooms during and after tx. I went to a seminar yesterday at our local hospital. The subject matter was using Chinese Herbs. The speaker spent a good half hour just talking about mushrooms. There are even companies that grow them and then extract the healthy stuff and encapsulate. This seminar was for ALL cancers not just breast. Very interesting and I wondered if anyone had any experiences and could comment.
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Wrenwood..you know that there is a company in California that sells mushrooms that you grow yourself...they are organic...I think the company is called Back to the Roots or something like that....it is really cool...I think they retail for about $19.99 but you can get a couple of harvests from them....check it out..if you want more info I can find it for you....
Laura Jane..I love the WHEN not IF attitude..good for you...ah..your little man is 18...so he will graduating this year? And off to college...and your baby...My son is my baby too...we are going to visit him at OSU on Sunday...its only an 1 1/2 hour trip but it will probably cost us a few hundred by the time we get there and home...
I like your friend's quote...believe me...I have started living in the present...I didn't use to live that way...on Monday's I was already hoping that it was Friday! Now..I'm just happy that it is a Monday..ok..I won't go that far...maybe happy when it is Monday night...anyway...I do plan ahead..but not too far..I'm a little leery of that...I see the onc on Wednesday...if everything is good...I will plan the next 3 months...Lol.
Seriously Heidi? We are all going to die someday..dang....
Actually, isn't the world supposed to end in December, 2012 according to the Mayan calender?
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Wren wood - I've done a lot of research on mushrooms and think they can all be beneficial for us however you have to be very cautious on what kind you take during, after chemo etc. For instance you don't want to take reishi while on chemo it can countereact with the chemo etc... Shitaki is the same etc... People that don't know about mushrooms will claim they are all ok. Whenever you are taking anykind of herb etc. In concentrations i believe you need to be cautious. I know some can increase high blood pressure etc. You also really want a good source. I take matakiD extract daily ( literallybefore, during and after chemo) and it is supposed to help to prevent mets. May be one of the reasons I'm still here. I think a good reference source is the integrative oncology docs at Sloan Kettering . You can go online and research herb interactions with chemo.
I purchase mine through I-Herb on line. They are expensive and you can save a little money
buying from them compared to general retail. I do incorporate reishi and shitaki in my diet at all times, cooked only. We never want to eat mushrooms of any kind raw especially while on chemo.0 -
Titan..thanks but I am considering the encapsulated mushroom extract from a company called mushroomscience.com.
Laurajane-I did not and will not do chemo. I went against all the Drs advice. Had lumpectomy and rads. I am fearful of recurrence which is why I want to start taking Reishi and Chaga from the company I mentioned to Titan.
Thanks to both for your feedback. Best to both
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Lj: So glad your son opened up and let his feelings out. It will help both of you tremendously. Keep going.... you can do it.
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Wow, this thread moves along.
Titan: Big congrats on the 34 months, girl! That is a big number, and I am soooo glad you started this thread and still return to post. Love hearing from you.
Tifj: Your BS sounds awesome.
LJ: So glad you have been having some uplifting moments after all the crap you've been through. How amazing that your son opened up like that with you - a precious gift from a 18 yo guy! He sounds very self-aware and kind.
Hope everyone has a nice evening.
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Oh Luah..where else would I be.....
About the pink thing...I used to like pink..then when diagnosed..I didn't like pink...now I will wear it ..now and then..I bought some new running shoes..they are mostly black..with some pink..but they are totally awesome..I love pink and black together as some of you have said...I'm running in a 5k in June for a very young mom of two little kids that died of TNBC...I did it last year and pretty much cried the whole way...the t-shirts they gave out are black and pink and very cool...now I just need to get some black and pink running shorts and I'm stylin'...did I tell you that my onc is going to run this with me? How cool is that? I hope I kick his ***ss..ha ha... ..My poor onc..he is only like 44 but he has a new baby and a 2 year old...He doesn't have alot of hair but what he does have is gray...he said he just didn't have time to get married and have kids because of med school....He said that people ask him about this "grandkids" all the time..poor guy...
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As a place to donate money from your shirt sales, look up "breast friends". I believe they have a chapter in the NW area and they do alot of education and support to women.
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Wren wood- not sure how my previous post got changed so bad I was trying to edit it so I could add a message to Titan but then the original got deleted. Glad you read it first. Please look into the Mataki D then. I'll check that company out if you would like with my sister. She's a mushroom guru andvhas taught me so much.
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Wren wood it's Mataki pro D fraction there is one that is similar but it's not as good. My sister recommends you look at the website by a man named Paul Stamets his website is
Fungiperfecti.com. There are so many company's that have jumped on this mushroom bandwagon I wanted you to have a reliable souce to look up information. I-Herb carries his products, not all of them but a lot of them. Good for you for staying in the know!0 -
Here I am, back again looking for information / help on behalf of my mother. She had her first AC chemo last week. It seemed to go very smoothly and she was doing very well for a couple of days after, but early Saturday morning she developed severe abdominal pain and had to go to the hospital emergency. After tests and examination she was diagnosed with pancreatitis and admitted. Today she developed bowel / GI bleeding and the Drs are treating that too. The real puzzler is that all her pre chemo tests, scans and checkups were good. She doesn't drink and has never had pancreas. GI or bowel issues and had her gallbladder and appendix out years ago, which eliminates gallstones as a possible cause. All the Drs. said she had no outstanding health issues and was in good health - except for having TN BC of course. The oncologists who've examined her this weekend say that pancreatitis is almost never a side effect of chemo and the sudden bleeding isn't normal either.
Has anyone else here experienced any of these after chemo? Poor mom is so discouraged. Only a week ago she was feeling great and ready to get on with her treatment. Now she is dejected, stuck in the hospital coping with these awful things and says she doesn't want to do any more chemo as it's done such bad things to her.
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Laurajane - Your son - such a sweetie, love him. I am so glad you had that time with him. Honestly, I hope the world ends in December, as they say. We will all go together, which will be awesome! Phthalates - I had never heard of that, I am going to google and find out, my God, what is that?
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Tryingto: So sorry to hear about your mom's condition. Chemo is very tough on the GI tract (which is why they give you meds for nausea), but I don't have any knowledge or experience with pancreatitis. You may want to start a new thread under the Chemo board where it would be seen more widely.
Hope your mom is feeling better soon, and the doc can take some precautions with the next chemo. Many women do experience unintended side effects, worrying symptoms and hospitalizations for acute conditions - it does seem to come with the territory of chemo's suppression of the immune system. As discouraging as it is, I think most of us here would agree it's important to move forward, even if greater surveillance is needed or the treatment plan has to be altered.
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Thanks Luah. We're hoping to speak with her doctors today to see where we go from here and how to help her to heal. I'll pass on your words of encouragement to her.
Jenn
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Laurajane, Thanks so much for the info. I will check it out. And Yes, please do share my info (mushroomscience.com) with your sister. The more I can learn the safer I will feel.I have read about so many positive results with 'shrooms....what if everyone one of us could prevent recurrence or better yet, even stop women and men from gertting this horrible, life changing disease?
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LJ - I am so glad you had an evening with your son. Mine is 17, and I'm honored when he decides to spend a little time with me!
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I'm having shortness of breath and very fatigued. Awaiting blood test. I sort of have a burning sensation in the center oft chest, but I can't tell if on the inside or outside on my scar. Crazy!
Wishing everyone a "good" day. Xxx0 -
Wren..could you tell me more about the mushroom thing? I'm always looking for ways to help us against reoccurence..I'm very open minded; however...I'm not one to go way out there with stuff...I know that veggies are great for us..and everyone with or without cancer...
My son is now 21..and though things are a little better..I hear ya with the teenage boys...you gotta love them..but they can be very weird...
OBX...good thing you are having it checked could be a cold..could be SE's from treatment but glad you are on top of things.
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I'm a TN about to start my neoadjuvant chemo regime - 4 A/C every two weeks, 4 Taxol every two weeks. Then it's on to surgery. I'm nervous about the chemo of course - everyone has such a different experience with it. What will be mine? But I'm also thinking ahead to surgery. Here's my question. It seems like a lot of TN women have masectomy vs. lumpectomy. At this point, my surgeon is saying lumpectomy, particularly since the tumor will (hopefully) shrink during chemo. My head says masectomy, just to be on the safe side. I'm not sure if this makes sense from a medical standpoint, but it does from a psychological one. I'm 56, have not been BRAC tested, no history of bc in the family. How have others approached the lumpectomy vs. masectomy question when the option of lumpectomy was available to them?
I'm glad to be part of the forum. It's been comforting and informative. At this point I'm obsessed with all things breast cancer, so it's a great source for me.
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Hello Annie - I had a lumpectomy on the advice of the surgeon. Mine was before chemo and I was pretty ignorant about everything cancer related. I was just pleased that I could have a lumpectomy. You will find lots of TNs do. However, it usually mean you need to have radiation too. The stats show that a lumpectomy plus rads is the same as a mastectomy in terms of survival rates, so it mostly comes down to a personal choice. Many of us also had the same chemo combo - AC/T.
I'm sure others will be along soon.
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