TRIPLE POSITIVE GROUP
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Papaya leaf has shown promise as an anti-cancer supplement, in addition to its positive influence on the lymph nodes:
http://www.physorg.com/news187372336.html
I'm a big fan of Dr. Bharat Aggarwal who is using traditional Indian foods to treat cancer at MD Anderson in Texas. He has put thousands of patients on curcumin (turmeric extract) and found that in some cases it works better than chemo.
If there is research to support the use of herbs and plants, I'm all for it.
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windlass - Eat lots of good protein. That can help.0
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Christean: I also found the anticipation of doing it actually way worse than when it was just over. Yes, it's very cold with no hair, but also cooler once the weather gets hot. I used to sleep with a hat on just to keep warm, now that it's summer and my DH loves a cold room, I keep an extra pillow near the headboard just to touch the top of my head to keep it just a little warm. My hair is actually growing back quite quickly, but is still just about 1/4 long. Friends often tell me how nice I look with this short hair and like to "pet" it; makes me wonder what they thought of my regular hair length! I think it has given me a confidence I've never had.
Also, no blood draws for me at all since the end of chemo and only see the onco every third Herceptin treatment.
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My hair is 3/4 inch long, and I have no confidence in it whatsoever. (I do like to pet it, though. After a lifetime of really long hair, it's a strange feeling.)
Good for you if you look good with hair that short! I think it takes great cheekbones like Demi Moore or Natalie Portman to pull it off.
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It's funny but I was bald in the winter. I did get a hat but it was too warm for me. On occasion I did wear a head band around my ears at night because they at times got cold. Now I have hair but my husband keeps the AC on so high that my ears are freezing when I first got to bed. Too funny.
Windlass I had really beautiful shoulder length hair for the last 10 years. My hair is still not like my old hair but with some product and hair color it still looks nice. People are telling me (including on this forum) I actually look better with short hair.
To be honest it's so easy that I'm keeping it till at least my real hair comes back (I hear about 10 months) because now it sticks out a lot and it's so easy. Applying your makeup properly is key. Not sure if I posted my transistion link here. It is on the Hair Hair Hair thread but I'll repost here for you: linky I do update the image every so often.
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Iago--Everyone reacts differently and will have a unique hair experience. But it really helps to see your timeline. I'm looking at my hair today, only 7 day pfc, and it overwhelms me to think how much growing has to happen. Seeing how quickly your hair changed from something like what I have right now to normal-looking hair gives me hope.
I just want to know when I can do something, even a temporary fix, to get some colour into my hair. I don't want to rush things and make a mess of what little hair I have, but right now, it's invisible unless the light hits it just right. And I really miss my bangs. No helping those; they'll take months to come back.0 -
Pasmith I'm still waiting for the front to get longer (bangs). Funny but when I used to have bangs they seemed to grow so fast.
I will admit I was OK with the hair loss. Most women are not. My hair had started to recede 5-6 years ago (about the time my BS said my cancer started to grow. Hmmm wonder if any correlation.) I was upset then but then came to terms with it so I assume that's why I was OK with it . BTW most of the receding filled back in after chemo. I sure hope it stays.
I still want my old texture back though. What I have now is finer, dryer wih no shine. Time will tell.
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Iago--I hear 'ya about the bangs! I had to cut them myself at least once between haircuts, they grew out so fast.
While I'd be happy to get my old hair back as-is, I mightn't be too upset if it came back finer and a bit thinner. I know some women would smack me for saying that, but I love the wispy haircuts that have movement and respond to hair products. My old hair was so dense and heavy that it might look good for about an hour and then gravity would take over. Surely more manageble hair isn't too much to ask in return for what I've been through!0 -
I always had longer hair and never had bangs. I wondered what I would look like with bangs. I have them now and they don't add anything and I find the feel of them on my forehead kind of annoying. But at least I got to try it out! I'll be going back to the no bang look.
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I know it was talked about on one of these threads, but when your hair does start coming back, what kind of shampoo, hair products, etc. are you using?
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achpurple--my hairdresser recommended a Redken product line called Intra force (http://www.intraforce.com ) It's designed for thinning hair from various causes and supposedly creates the optimal environment for growing hair. It has shampoo, conditioner and some other "intensive" treatments. I got a 30-day kit with the basics and a leave-on scalp treatment. Does it work? I'll let you know when I'm done! Honestly, I think it will be good for the scalp and new hair, but I'm not expecting miracles.
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Same stuff I always used. My hair dresser did have to change the brand of color we used. It was too red and fadded much faster now that my hair is more gray with some texture change.
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Hi ladies,
I haven't posted for awhile. I am triple positive. And weakly ER positive. PR neg. I have not seen too many people who have my same dx. Is it true that a triple positive person responds better to herceptin? Is there anything good about being triple pos? What is the outlook?
I have been doing well and feeling good. It took me a couple of years after chemo to get energy back. The weeping and tears have pretty much diminished. My doc put me on cipralex for anxiety and this seems to help a lot. It's difficult sometimes to carry this load and I think about the future...but then I remember to try to live in the present.
Be good to hear your point of view,
Tuckertwo - Dianne
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Dianne it is not unusual to be weakly ER/PR positive when you are HER2+. I am only 30% ER and only 5%PR myself. I don't believe our ER/PR status has any effect on how Herceptin works but I don't know for sure. It is actually better to be ER+ because then they can give you Tamoxofen or an AI. Just another gun. Yes even weak status gets it. I'm on Anastrozole.0
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Thanks Lago! I decided not to take Tamoxifen or AI after a trial of trying them and feeling pretty yucky. They said I was allergic to them. I am taking quercetin and lots of supplements and keeping my fingers crossed!
Do you, or does anybody know what triple positive her2 mean opposed to + or ++?
tuckertwo
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Tuckertwo- Usually Triple positive means that you are ER +, PR+ and also HER2+. I think you may be asking about the IHC score for Her 2. One + means you are negative HER2, Two ++ means you are borderline, and Three+++ means you are Her2neu positive. Here is a link that may explain it better.
http://www.breastcancer.org/symptoms/diagnosis/her2.jsp
Hope that helps
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Hey Christean,
How are you feeling?
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Hmm, ran back and looked at my path report...depressing. I am only 16% er positive and 95% pr positive. It shows my her2 as 4. The tumors...3 of them!!!!, were grade 2, but extensive dcis at grade 3. Blech. What a mess.
I wonder why the low er, and such high pr?0 -
Gee-
If you ever get an answer to that ... let me know...seems to me the PR+ is the least understood aspect of our diagnosis.
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I'd like to know that too. I am also much more highly positive in PR than ER. I think 35% ER and maybe 95% PR. I will double check on that. My tumor was Grade 3 though. I thought almost all that were Her2 positive were grade 3. I also had 3 tumors, but I believe the neoadjuvant chemo has gotten rid of them. We'll see when I have surgery on Aug 17.
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I had a recent onc visit and asked what grade I am. I'm ER +95% and PR + 5% so the PR is considered negative. Reading my path report she told me I had intermediate grade tumors which would be a grade 2 but that having Her2 that is a grade 3 and said "It's a very aggressive cancer" which scared me the way she said it, so I have both 2 & 3. I updated my sig to show stage 3 based on the emphasis she put on "aggressive". I can't find a forum for my type: ER+/PR- Her2+ and don't know if there are enough people to start a forum.
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I will stay in denial...I like that my path report says grade II instead of grade III. My oncologist scares me enough with her her2 doom and gloom. I am ok with keeping my head in the sand on this one, lol.
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Hi all! I am feeling really good. A bad taste in my mouth and a little heartburn. Other than that the last 3 days have been really good...Man, love the days where I feel good! I have been working, and did some weeding in my flowerbeds. This afternoon I am going to hit some yard sales.
I had my weekly herceptin infusion yesterday. About 10 minutes after accessing the port, I start having a heavy pressure sensation in my chest and I start coughing and hacking. They hadn't even started the herceptin yet...I was just on a saline drip. I really start to panic and because I'm a nurse all these things are running through my mind...the MO comes in, the nurse turns the IV off, puts EKG leads on etc.etc. And I am thinking...OH NO....I'm having a reaction, or cardiac issues, or my port vein is hemmorrhaging. And then I start worrying that I am not going to be able to get my herceptin....and I really need herceptin. I am really in a panic. Then my MO says....her vital signs and everything else is normal. Lets give her some Ativan in her IV....I think she is having a bit of anxiety. 5 minutes later- I am all better. No more coughing, no more chest pressure, everything is all good. They hook up the herceptin and 30 minutes later I am all done. No more issues. Boy, I really feel a bit silly!! Now I guess I know what a panic attack feels like. I guess they will keep the ativan handy for my next infusions!
I finally had an appt. with a genetic counselor. It was alot of good info. and I had my blood drawn for BRCA 1 and BRCA 2. So, now it is a 2 week wait for me. I have a sinking feeling I will be positive...don't know why.
Hope everyone is happy and feeling good!
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Sorry, GeeWhiz, I was not suggesting your tumor was grade 3. I am sure it is grade 2 as the path report shows. Just I was told most tumors that are Her2 positive are grade 3, not all.
Christean, glad everything worked out. I take an Ativan at home before I leave for every chemo treatment. Only one more chemo for me, but a lot of Herceptin still.
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My surgical tumor grade was listed as Grade II/III - looks like even they couldn't decide!
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My grade is a 3 but no stage. I have had surgery but the chemo made it nearly impossible to stage it. What a crazy wild ride we are all on.
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There are some really good people in the world. I want to let everyone know. There is a website that offers a free scarf for people who have hair loss from illness. A few weeks ago I ordered a scarf and today it came in the mail, beautifully wrapped, along with a get well card personally signed by about 20 people. I was touched. The scarf is beautiful....gorgeous infact. I will be proud to wear it. Here is the link for anyone who is interested. What an amazing company and compassionate people.
http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html
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Christean: Thanks for the tip! They were really quick to answer my email so I will be getting one soon, too. Yay!
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I just ordered one today - thanks for the information!
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Hi ladies,
I see a naturopath and this is what his book says about PR+/PR-. I am PR-.
"PR+ may have a significantly better prognosis, as PR inhibits aromatase, Her2/neu and COX-2 expression. It is believed that ER-/PR+ represents a false negative ER result and that ER+/PR- represents a false positive ER result, because PR is a product of an intact estrogen-ER pathway, thus PR+ is only possible if ER is also expressed. These samples should be retested to confirm the result."
"ER-/PR+ cases have sometimes been prescribed progestins to reduce growth and metastases. ER+/PR- cases are relatively resistant to Tamoxifen. About 50% of PR- cases will express HER2. "
So, is that all as clear as mud?
tuckertwo
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