TRIPLE POSITIVE GROUP
Comments
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Solt,
I used Fage 0% yogurt for most of my protein needs during chemo....you can blend it with just about anything, or eat it plain.....really gets your protein up without many calories!
I agree on the spin about Obamacare.
Sometimes I get confused because I read two of the very first health care drafts (required by a Master program I was in) and then the final bill which became law....lol. So I have all this stuff stumbling around in my head.
It can be a little daunting when you start looking at the expense to tax payers tho. Scary stuff.
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Sol- Today, I am feeling soooo good since my last tx. I dread going in for #2 tx.
I am trying to up the protein. I went from 145-148 lbs pretx and went down to 140 lb 7 days after tx. I'm gaining it back now. Cottage cheese, chicken, steak, peanut butter ect. And of course veges and carbs. I'm back up to 144 today. My next tx is on Nov 2nd. I had absolutely no energy for 7-10 days after tx. It was horrible. And mentally not in a good place. Is it okay to continue my multi-vitamin too? Also, where can I get non soy based supplement drinks for during my chemo days when I don't want to eat? 0 -
TonLee- just saw your post
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OK U'r talking over my head but that's fine--When I tried to read all of it, I didn't get very far, didn't understand all the care and amendments. but u gals seem to understand it so I give u loads of credit. Anyway my brain isn't what it used to be so I'll just blame it on that.
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Tonlee...
The Ryan Budget cuts $700 billion Medicare. The government is no more or less efficient in health care in this country than the private sector. It's a question of where dollars are directed...patient care or corporate profits.
And in the Affordable Care Act..the government is not providing the healthcare. It is setting up exchanges so that there will finally be choice and guarantee in purchasing health insurance.
You seem to be guaranteed your government health care that you denigrate., The vast majority of us have never had such peace of mind. Try purchasing your own insurance in the private market as I have all my adult life now that you have a cancer diagnosis.0 -
Ooohhhh sol- I want it! The spread sheet!!!! Super interested!
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Sol- just PM you with my email. Thanks so much!
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I'm reeling from news that I have to stop Herceptin. My MUGA went from 60% baseline to 60% (after AC) to 53% after 12 weeks of Taxol and Herceptin. I had one infusion of Herceptin alone. The cardiologist put me on lisinopril and wants to see me in December for an echo. Honestly, I'm so upset I can't see straight. Although my heart is seemingly normal, my cardiologist says that she can't let me be subjected to further damage. It is all so scary. I feel like my safety net has been pulled out from under me.
Interestingly enough, when CT changed the law to mandate that insurance companies pay for ultrasounds for dense breasts, I called my imaging center and tried to book one for myself. They told me I need a doctor's prescription, so I waited until my next mammogram nine months later. I suppose if I had pushed harder and called my GYN I would have found this freakin' tumor so much earlier. Sigh.
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Vballmom, I am in the same position. Staerted with a EF of 59% to start. Ended up with 48% on the MUGA. Onc pulled me off Herceptin. My cardiologust also wants me off. So, no more. I comfort myself that I got half a year, and got what studies says are the most important infusions, the ones accompanying the chemo. Much love.
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Had ro do this it's so sweet.0 -
I was diagnosed on 1 December and had my lumpectomy on 7 December...
We don't have Parenthood showing here (I think, but then I really don't watch much TV) - how long has the character been asked to wait for surgery?
Jenn0 -
A forum for women facing the most frightening healthcare crisis in thir lives is no place for demagoguery on the Affordable Care Act. While there may be differences in opinion as to the moral and ethical responsibility of providing health care for all our citizens....the Act itself , its timeline and what it provides for are matters of fact.
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Sol, I had absolutely no symptoms. They asked over and over again if I had any shortness of breath, swelling, etc. and I have had nothing. I only have three months of Hereceptin in.
Thanks for the comforting words, Moon. I know I am not alone.
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kayb My understanding of Medicare under Obama's plan is the same as yours. They are cracking down on medicare "scams" and over payments as well which is saving quite a bit of mula.
Vballmom there are pleny of women that didn't get Herceptin many years ago that are HER2+ and are still NED today. Herceptin only works for 50% of us… but in that 50% some of us don't even need it. Remember as a triple positive you also have endocrine therapy. At least you got some. It would be awful if you went the full course then kicked the bucket because of heart issues.
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Thanks, lago. I don't post much but I read every day. Love you ladies.
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Vballmom...
Are you stopped for good or just temporarily? I have a friend who had ER pos HER 2 pos bc 13 years ago . She was treated with adriamycin....no herceptin. 5 years ago she developed congestive heart failure presumably from adriamycin but she has not had a recurrence of BC. Still NED.
As Lago says...these are standard treatments and so far exactly what works...chemo, herceptin, radiation, hormone therapy, surgery, exercise, diet is still largely educated guessing.
We all seem to feel that panic feeling when we are steered away from what we've been told is the care plan. I remember asking my MO at my first meeting. " what if I can't tolerate these meds?" He winked, told me not to worry and said he had alot if other tricks
up his sleeve.
You may jus have had as much hrceptin as you need. Protecting your heart is very important.0 -
Ashla, you are so right. We so badly want there to be an answer! You know, the one that works for everyone! There is not, and it is so frustrating. We still don't know why one woman will progress and another will not. I have to keep looking at my family, including my aunt who is a 27 year survivor and remember that back then they didn't even know about Her2. I am grateful to be among you ladies who are so helpful and supportive.
I have been familiar with the serenity prayer for many years, but for the first time, it is truly hitting home for me.
Have a glorious day. My cardiologist told me to go live my life and be sure to do what makes me happy. Today I will travel to Boston to watch my youngest play some college volleyball.
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hello Vballmom,
I was in the same situation for herceptine ( I'm in a trial for H, even I'm not Her+): MUGA test from start 67%, after 4xAC 54%, after 12 weekly taxol/herceptine 48%. any symptoms. they asked me to repeat Muga after 2 weeks, and I started to exercise more. light cardio 20min daily, and bicycle etc. I was 54% afetr2 weeks , so I continue herceptine. an error is possible if do not have any symptoms.
good-luck
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BOSTON I miss home. If you get into Cambridge, on Mass Ave just up the street from Harvard Square (going towards MIT) is my favorite fish place. Fried Seafood platter to die for. (Don't go to Legals. Too $$$). You must try it. Dolphin Seafood
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Vballmom...
Your cardiologist is very wise. The truth is none of us here knows what the future holds as to BC even with complete standard of care treatment. No one anywhere knows what the future holds. After that first cancer DX.....we will never look at our health or life the same way. IMHO.....the key is to live our lives in a more happy, meaningful way trying to make the most of those wonderful moments like your child's volleyball game!0 -
Ashla u'r so right--I was "lucky" enough ro get a full yr of herceptin--Now I'm seeing a cardiologiest du to some problems maybe from hercepton--so who knows what's going to happen. Ir's a toss up of everything.
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Ashla,
You have mail.
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I took 2 water pills by mistake this morning---boy is this fun and I've been dehydrated Oh I am my worst own enemy.LOL
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Ladies,
I apologize for my part in politicizing this thread. It's a fine line between talking about actual cancer care, and how to pay for it. But completely inappropriate for women in tx right now. It was never my intention (though it happened), to pollute this thread with the ugliness of what is happening in the political world right now.
So I'm done with that aspect on this thread. Feel free to PM if you want to discuss it further. Or fight about politics...lol, whatever.
T
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Vball,
I'm sorry to read about stopping Herceptin.
My Onc mentioned a trial in progress right now that places women who will get Herceptin on Lisinipril. The thinking is it will be cardio-protective (the hope anyway).
Since this is fairly early in your tx, your heart may rebound with the Lisinipril enough to start Herceptin again.
Even when I was taken off, we waited for 12 weeks to see what my heart might do.
So it's not a lost cause. You may rebound with a little help from the Ace Inhibitor. My Cardiologist said he wanted my heart strong enough to take as many txs as I could get.
He was willing to let my EF drop to 45%. His rationale? 45% EF may not kill you, cancer will. (The old, short of death, any tx is good philosophy~not mine)
My Onc wasn't too big on that idea either. However, he may have been more inclined to listen to the Cardio. recommendation if I had to stop early in tx.
Has your Onc said you are done done? Or can you take it again if the heart bounces back?
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Okay, I may have asked this question I s the past, so forgive me. But my MO is only doing echo's on me. He said a MUGA is not necessary. ?? Why not? I'm getting an echo every 3 months.
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Ms Tori, the current 2-D echo technology is as sensitive as the MUGA. In fact, I was surprised when I heard my oncologist wanted to do MUGA since it is barely used in cardiology anymore. I asked if I could do echo instead and he immediately said "sure, of course" so either works. I just feel like I'm going to have enough tracer injected in me over the next year, I don't want any extra.
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Tori, I have never had a muga. I get an echo every 3 months.
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