TRIPLE POSITIVE GROUP
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ktheilen we are all praying for you. As well as ourselves. But tamoxifen and the estrogen inhibitors are our hope. Much love
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Thank you for all the wise responses, friends. Prayers for all your health and spirits as you walk this walk.
JeniE
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I was told I was PcR...I didnt have clean margins after my MX, and they waited until after chemo to go back in. I had a clean pre-surgery scan and the surgeon made sure he got wider margins...but he said that what had shown up previously prior to chemo, no longer was anywhere to be found.
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kthielen I had pCR after neo adjuvant chemo. For er/pr + and her2+ while this is great news it does not have the prognostic significance as those who are er/pr neg. That's because we still have the hormonal part of the cancer to deal with - BUT this is good news is we have tamox and AI's which are extremely important in our treatment protocol. So don't stress about not getting pCR - clean nodes is fantastic and you will go on hormone therapy which is a very very important part of our treatment. I know we always think of chemo as the "big guns" but the anti-hormonals are powerful drugs!
big shout out to everyone! haven't posted in a while, try to keep up but this is a very fast moving thread. Hope everyone is well
Im finally having some FG done on Wed and I have to tell you the thought of going under scares me but I have this huge crater on my chest that he will fill in. Can anyone give me their FG experience. Is the donor area really sore (tummy) how much was re-absorbed? I read on here that someone was in pain for 10 months after and it scares the crap outta me
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Rozem, I have had fatgrafting so many times I can't even remember...5 or 6? And I am headed in for nipple recon soon and he wants to fatgraft again, since I am under anyway. I had brown dead skin for a long time after rads and the fatgrafting REALLY REALLY helped with that. Within a few days of my first graft, the skin started to change. The exterior skin is not tight any longer either.
BUT, it hurts like a mother. Some women had no trouble at all. But I am thin and muscular-ish. And OMG, it takes me weeks to recover. Black and blue. But, when its over...its over! No lingering side effects for me. The night of surgery I am always walking around the neighborhood to get things moving at my surgeons recommendation.
I don't tell you this to scare you..just to say keep the ibuprofen handy. I didn't do pain pills, they always make me feel WAY worse. And God Bless those women who say they feel nothing. I am supremely jealous, lol! But its worth it. All my divots and craters with recon are gone. Most all the fat "took".
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Rozem-I just read its coming from your tummy....that area didnt hurt me! It was my thighs that were miserable.
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kthielen many women do not get complete response and are doing well. Talk to your MO about this. S/he should be able to spread more light on this.
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thanks so much geewhiz - yes only from my tummy. I heard that about it helping with scar tissue and that's the other reason Im doing it. My rads side is so friggen tight and I have a lot of pain there. I am hoping it helps the scar tissue. Question - did you go off tamox? im off for a week which I don't like but my friend said because it was day surgery she didn't go off at all
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No, Rozem, I stayed on it. I never got told to go off it. It didn't seem to affect anything.
And Kthielen..I hear of people all the time surviving a long time with residual cells. Thank goodness we have LAYERS of protection with +++. I am sure the tamox/AI's will do the trick for you!
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I have a hair question: does it come back while you're on Herceptin alone? I read that hair loss is not a common side effect, which makes sense given how it functions compared to taxotere or carboplatin. Do that give Perjeta afterward too now? Another woman on the August chemo board said she'd be getting both for 6 months.
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Yes Cassie, your hair should come back while on herceptin ; )
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it might grow very slowly on herceptin, but should come in faster once you finish it.
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Here is my hair progress about 10 PFC and still on herceptin. Eyebrows are back to normal in fact had to have them waxed. Eyelashes are coming back and are almost normal. Of course chin hair, leg arm and pit hair are doing fantastic LOL
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I've completed 5 of 12 weekly Taxols (H/P) and my hair is growing! I was told it would grow slower with Herceptin. Did anyone use anything for hair growth while on chemo? I'd love to get my hair growing faster but don't want to use anything that would interfere with the chemo.
Linda, is your hair really soft? Did you shave it one more time when you were done with chemo? There are some on the hair thread that buzzed it one last time and it came in faster with better texture. My hair is coming is soft and a darker color. I'm really blonde in the summer and it darkens a little in the winter. I wonder if it will all be dark since it hasn't been exposed to the sun. Haha...not sure why I said that. There hasn't been hair to expose to the sun!
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I was using Minoxodil before chemo. I stopped on chemo… because I knew it would be a waster of money. Started again soon after chemo ended. My hair grew a bit slower on Herceptin but not too bad because my hair grows pretty quickly normally. I did have some growth before chemo ended.
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Mommato - I did not shave after chemo - it started off really soft but seems to be getting more and more texture as it is coming in. It appears to be a little lighter than my pre chemo hair and I am the same - lighter in the the summer and a little darker in the winter. I am not using anything yet but may get some Minoxodil to help fill it in a bit. It does not seem to be growing as fast as my hair normally grew but it is growing so I am happy lol
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Yay! Something to look forward to.
Thank you all for sharing!0 -
Linda your hair looks great! Seems to be filling in evenly. I'm almost 6 weeks pfc and my hair on top is soft, I love rubbing it. The hair towards the front is sparse, but I see little shoots poking through. Mine is coming in the same color it was pre-chemo,which is white, but I colored it so no one knew. Cats out of the bag now, lol.
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Me too, Debiann! I spent a lot of money to maintain lovely caramel highlights but the grey fuzz that's coming in is giving me away. But it's still hair-- so I'll take it! Fall is here and my skull is chilly.
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I see Minoxidil for men but not for women. There is Equate, Lipogaine, and Rogaine for women. Are these the same products? Did it work really good?
I went to my boys flag football game yesterday. I wore two hats to keep me warm! I can't imagine how many I'll have to wear when it's ten below zero.
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Rogaine's active ingredient is minoxidil.
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Mommato3 I use the Walgreens brand of Minoxidil for women. It's right next to Rogaine. It's cheaper and not as greasy. Same amount of active ingredieant.
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Hi to everyone
It is such a long time since I have posted, so wanted to just say hello and give an update on how life is treating me. In Feb 2015 I will be 4 years post diagnosis. I was only 41 then.
I don't think any of us who have experienced this disease can say that we are ever back to normality, but in general life is good and I remain optimistic that my treatment regime did its job. I have recently lost an aunt to stomach cancer and because there were no lifestyle factors it has confirmed for me the lottery aspect of cancer, whilst still trying to lead a healthy-ish life myself.
Hello particularly to Iago- you helped me through some tough times and sent me personal memos which gave me strength.
Big hugs to all.
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Ahh Jackboo so sweet. Thank you for checking in. So good to see the old faces. So glad you are doing well. ♥ ♥ ♥
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Lago
I believe in synchronicity. Your difficulty finding a job in these past few years has allowed you to help countless people find their way through the breast cancer maze.
It's too bad that selflessness , generosity , compassion and kindness rarely pays well in cash:)
Hopefully you have found even more valuable rewards:)
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Ashla I always said if I won the lottery I would be doing volunteer work… and loving it. I don't mean donating money. I mean actually doing work. I am so happy I have been able to help so many women.
Work for money is something I need to do to pay bills. It isn't something that defines who I am… I'm a designer/creative and having a paying job isn't changing that. I still experience my life through a designers eyes. BTW I feel the best designers have empathy. I mean how can you design something for someone if you don't?
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well said Lago! and I agree you have been an invaluable support to so many on these boards. Hugs!
can I reach out? im doing the ugly cry today. I got rejected on 2 potential jobs - I got down to the last 2 on one and 3 interviews on another and both went with another candidate. Ive had to fudge a bit on my resume because I didn't work for 2 years with this crap and the last year I am just doing some contract work but employers hate the self-employed so I put them down as an employer (friend of mine). I was told today that 3 years without a big job and im pretty much up against people who are at the top of their game. I know its just work and after all we have been through it is insignificant but boy does your ego get bruised. If one more person asks me to "tell me about yourself" im going to sock em. Its a painful process. I just feel like Im being shit on, first the C then my beautiful father passes away now this. Im tired of all these crappy journeys. Im due for a happy one
thanks for letting me vent - just needed to get it out
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rozem don't give up. There are so many of us, that didn't even have the cancer break that are still unemployed. I have worked various contracts but this January will be 5 years! I've been rejected many times for jobs I should have had. Many times due to age (they hired the 24 YO even though I was willing to work for the same rate ). But people do get jobs. We are just waiting for the starts to align for us. Wish it wasn't taking so long!
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https://www.youtube.com/watch?v=0_7JJrU9HUg
Saw this and howled with laughter!!! Apologies if it offends anyone and Big Love to all my BC+++ sisters
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Rozem, hang in there! I think the job market (here anyways) is still a little tough. I've seen many employers go for the younger college grads so they can pay them much less! I quit my full time job when my twins were born in 2006. I have worked part time the last three years at my kiddos school. Not this year of course due to the move and treatment. I'm worried I won't be able to find something next year. I'll keep my fingers crossed for the stars to align for you and Lago!!
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