TRIPLE POSITIVE GROUP
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Nicky - For me the chemo stopped my periods and shut down my ovaries so in a sense for pre-meno women (and perhaps peri-meno too) chemo is like anti-estrogen treatment.0
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have been trying to upload a pic with my hair, but not having any luck! Tried copy and past repeatedly. Finally got a box to show up, but no picture in it. Makes me crazy.
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Fluff I use photobucket.com. If you are just copy/paste from your desk top it won't work. The photo needs to be hosted on an online server not your computer
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Thanks ladies for sharing your post bmx scarring experiences with me, both PS and SO believe is scarring as well. I will leave this to rest, how scary, we are all some brave people... and VIVA SPECIAL K, LAGO, AND TONLEE everything i peek in here you have great information... i hope this October finds you ladies well with all the pink stuff around....
Big hug!!!!!!!
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Kayb: So honoured to "meet" you. I actually got a little emotional when I read your post. I just met with my oncologist last week and we talked about clinical trials. He said that there weren't any at my hospital fitting my diagnosis at the moment but he actually told me that the path I am on is because of clinical trials and because of women like you, he felt that this was the best course of action for me.
As far as I can tell from reading about the TDM1, they talk a lot about reducing the SEs like hair loss and nausea. I actually haven't any of either yet. I'm in day 21 after starting treatments and haven't had the big loss yet. My worst side effects have been from the steroids (Decadron) that I'm on.
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Thanks Awn!
Solt,
Hope you get some answer on the heart issue. I wonder what kind of heart problems you can have that aren't Herceptin related? Please keep me posted I am always interested in what other Cardiologists are telling Herceptin ladies. Sometimes it gives me ammo for better tx!
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Sol yes keep us posted--cuz I'm seeing a card now for a little damage--nothing major but personally I think it's related to herceptin and this is way later.
WELCOME Nicky, sorry u'r here but as u can see u get loads of help from all the knowing ladies.
All I ever had was D and still do but with violence and I'm on a scrpt for it so it lessens it--but no one can figure out why so I really can't help u but my sister takes 1 Immodium everyday and Metamucil every day and it has helped her alot.
BTW has anyone tried the activia? That's supposed to balance everything?????
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Uuugggghhhhhh!!!! Only 4 weeks left of chemo and I am getting ALL of the side effects now!!!! My ring fingers on both hands are Turing red (ish) under my nails and they hurt. Should I be icing them? Is that what it is for? What do I do?
I am also waiting for a post treatment echo before surgery.
Meltdown coming...I can feel it:(
On a positive note- tonlee i love you hair in your new pic.
Great job Lago! And thanks for the linky with the pics of your hair:) it helps.
Not sure if any of you are gluten free...saw this link and thought it was an interesting list
http://www.tacanow.org/family-resources/gfcf-food-shopping-list/
Beleive it or not I got it from a twitter feed from jaquline from the New Jersey house wives...her son is autistic and she follows a gluten free diet. Thought I would share just incase some of you go to the gluten free threads also:)0 -
Just had my Mammo done I was so strong for days But the minute I got in that room and seen that machine I completely broke down crying
All the emotions just come flooding out. I clearly am not as strong as I thought I was. And waiting is going to drive me nuts won't know until tomorrow or Friday..0 -
Jennifer I really hope your fingernails don't do what mine did but it sounds like they are going to eventually lift. Mine started to hurt after TX3. So eventhough I started to ice after that it was too late.
Ang this disease breaks all us strong women. It's OK to cry and let it out.
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Ang..
I had a meltdown over my mammo last week too...if you're interested it's all here on the forum .
I was very, very seriously considering bmx for precisely this reason and was very disappointed by how I was treated by my BS's office.
I think in addition to all the anxiety...exhaustion both physical. and mental is setting in.
Right now I'm on day 3 and phone call 4 trying to get a letter from my mo to my bs giving the okay for my port removal. They won't schedule without the note.
Oct 13 is one year. Oct 15 probably my last herceptin . Looks like I'm going to crawl over the finish line.....but i'm gonna get there and you will too! With alot of help from our friends in the forum.0 -
Hi everyone, I'm technically not triple positive, but wanted to respond to TonLee's question: I wonder what kind of heart problems you can have that aren't Herceptin related?
I have had SVT for about 30 years (supraventricular tachycardia). Which is basically a condition that your heart races for no particular reason. Cardiologist I had then said it wasn't dangerous unless I developed high blood pressure with it. Webmd explains it very well:
http://www.webmd.com/heart-disease/tc/supraventricular-tachycardia-overview
I was diagnosed with high blood pressure about 8 years ago and have been on metoprolol and lisinopril since. I think I have 2 more herceptin treatments left. The SVT has been controlled very well by the metoprolol, but during herceptin I have noticed it acting up more, but my echos have stayed the same so far (EF 60 to 65). I have another echo Oct. 30. There are what is called vagel maneuvers that I use that have always worked to slow my heart rate to normal (coughing, holding my breath and pushing like having a bowel movement, etc.) Some day I will probably have to have a pace maker when the vagel maneuvers are no longer affective. My cardiologist I have now is very knowledgeable about herceptin and has many patients on it. He is convinced that my being on metoprolol before starting treatment has protected my heart muscle and told me to never let any doctor take me off of it because of long term effects of herceptin. I don't know if this is what you were asking about, but that's my experience so far.
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Grandma....
Thanks for alot of great info!0 -
grandmaV as far as I'm concerned you are as triple positive as I am. My PR is only 5%. I think this should be a thread that says Triple or ER/HER2+. We have the same treatments and issues.
Not sure about PR/HER2+ though.
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Soltantio, according to my cardiologist, herceptin doesn't cause electrical problems with the heart, only damage to the heart muscle itself, two totally different things, but stress can aggrevate and even cause an electrical problem like SVT or others. And I would say we've been under a lot of stress.
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Soltantio, I can exercise, but I probably don't get the same results as someone not on metoprolol. I don't know if yours will go away or not.
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Granma and ol,
My cardiolgist said electrolyte imbalances cause PVCS...premature ventricular contractions... Alcohol, caffeine, stress also play roles....in many of these irregular beats....0 -
ashla, you're right. I was able to control my svt pretty well for many years with lifestyle changes, until my blood pressure started to climb. If I strayed or if I had a major stressor is when it would act up.
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Also low magnesium levels.....
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Sol...
When I first discovered the PVCS years ago in pre op testing and had to wait for the cadio workup I felt like a walking time bomb. We had a very busy card store at the time and I talked to my regular customers about it. Turns out that almost all of them had some sort of irregular heart rythyms!0 -
GrandmaV - Hi! this is where I hang out mostly.0
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Lago...GREAT speech. I hope to see the video!
With regards to the magnesium...do you guys know that most folks, particularly cancer patients, are mg deficient? It turned up in a blood panel for me. I had no idea it was so common, AND such an important mineral.
Yesterday was my cancerversary. I am now 3 years out!!0 -
Congrats on your 3 years geewhiz. Awesome!
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Geewhiz, congrats on being 3 years out. Does it get better in terms of being able to not think about BC all the time? If so, when?
Has anyone completely changed careers after BC? Its kind of been the kick in the ass for me to want to move into something new, rather than spend any more time on something o don't love doing. Im just not sure how or what, and still feel overwhelmed by everything.0 -
Geewhiz.. Congrats on 3 yrs.. Yippee @!!!
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Geewhiz.....
Wonderful news! Such wonderful news.....makes me very, very happy and that ain't easy this week!
More good news....
They have announced the discovery of the gene that causes many of the non inherited forms of BC....I'll try to get you a link. It's a product of work done @ Cornell and Memorial Sloan Kettering.....0 -
Omaz, Hi, I've been reading along for several months. It's hard to keep up with you guys, though. So much info and activity on this thread.
Lago, thanks. Hope you don't mind, I saved your speech in my documents so I can refer back to it. It was great.
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Geewhiz- that is such great news!!!!
Ashla-I can't wait to hear more!0 -
Scientists say that they have discovered the gene responsible for many spontaneous, or non-inherited, breast cancers. Research published in the journal Genetics on Oct. 1 describes the discovery of the NF1 gene and it's association, when mutated, with more than a quarter of spontaneous occurrences of breast cancer.
The team of scientists, from such prestigious institutions as Cornell University and the Memorial Sloan-Kettering Cancer Centre in New York have found the scientific equivalent of a needle in a haystack, as cancerous tumors contain hundreds of mutations, some of which lead to the uncontrolled cell growth that we recognise as a tumor. Identifying alterations in the genes which result in breast cancer occurring is complicated by the diversity of possible tumors and lack of uniformity in the genes involved. The study of mice has been very helpful in untangling this problem as the genetic lack of uniformity can be controlled."
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