TRIPLE POSITIVE GROUP
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Wow.... This thread is smokin! And sadly it appears mostly not good stuff either
Not gonna mention the names because I'll forget some.
Just gonna say sorry all you awesome , wonderful, courageous ladies that you all are having trouble & woe but grateful we can be here together to help ease the pain!
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we ARE the best, arent we? :0
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new member! I just got the news today triple positive. I have had the lump and no nodes and clear margins so I thought I was set free then the dr looks at me and says he will put my port in june13......say what? I thought I was going to have radiation and call it a day! Now I'm doing my research on HER2 positive and getting scared. There is soooooo much I don't know. Thank all you ladies for being on this thread and sharing your experiences cause I am lost!
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hi agent99!
Got an appt @7 pm so just gonna say welcome! You will be an expert on breast cancer and lots of other stuff you never wanted to know about very soon. Her2 pos breast cancer used to have one of the worst prognoses in breast cancer . Approximately 20% of BC patients have it . But with the development of herceptin and several other more recent treatments it now has excellent long term survival rates!
Problem... Because it is aggressive, we don't get many passes on the various treatments even with small tumors and no nodal involvement.
We'll teach you the ropes! Gotta go!
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My triple positive treatment protocol reminds me of Mary Poppins' carpetbag. She had everything in that bag, and my MO did too....
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Hi Agent99 and welcome - you have found the right thread to get your questions answered and the only real advice I can give you at this moment is DO NOT GOOGLE HER2+ for statistics etc because so much of what you will find is not current and does not reflect the use of herceptin. Thankfully these fine ladies in here told me that early on and have saved me lots of anxiety. I am sure that a few of them will be along soon and will give you the pep talk! And hopefully Lago will come in and give you her famous speeches when you need them.
Update - got a call from my MO's office - I DO NOT have an infection - I guess the in office test was not correct - when they sent it out for culture - no infection - so no UTI or Kidney infection - that is good - but now that doesn't explain my mid back pain that has been there for a couple of weeks now. At first I assumed it was the neulasta - but it feels different than that - more of a dull ache - sure feels like kidney area to me and I do have moderate blood in my urine - based on urine test - I can't see it. Maybe my kidneys are just pissed about cleaning this chemo out?? Any thoughts?
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Hello ladies , congrats to all sharing good news and hang in there the ones like myself getting her a$$ kicked from all this . Had echo done today and again showed a drop by 5 points , last July started with EF of 65 held on until these last 2 dropped to 60 now at 55 , ugh..
Tomorrow i go see PS , both bmx sights opened and draining , not pretty I can se the te and the alloderm on the left right was sutured but looks horrendous . Wish me luck please ! So depressed , this is the only place i truly am open with the way i feel , I thank you all for that .
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Agent99 welcome to this site---this is a well informed group of women who cn really help u, please don't google much just ask, u will have a much better feeling.
And birds what a subject. and yes blue birds are very aggressive and can be mean--when I was young I walked out of my side door to sweep the driveway just carefee waving the broom and this BlueJay attacked the hell out of me I was screaming, my dad came out--my mom wouldn't and he said to me u scared that poor bird. What!!! that bird drew blood, and yet my dad just said think how big u are and how little it is, it's protecting it's nest. Well my dad didn't protect me, nature was his big love. I came in a lot of numbers down til I was an adult then I was his favorite and he would tell everyone too. None of us cared really, we'd just laugh.
Mom2 I was reading u'r post and felt so bad for u, there is no time that is scheduled to grieve this disease and it is grief of different things, what u might feel u can't do, or how u feel so differently or just the fact that it might be aroud the corner waiting, so grieving is necessary for whatever reasons u have but u can't grieve to long cuz it will be habitual so if u need help to unsadden (ok my word) please ask your Dr. They will be more than happy to help u and see u thru difficult times. Sometimes u'r body shows no signs of cancer but u'r still worped by it and other SE's take over and it seems forever and u feel worse than before u were DX'd --this and other diseases cn take u mentally as well as physically but if u can get help it just means u don't want to feel like this.
And PBrain I think when u have a high powered job this might be more difficult to face afterwards, I never did go back to work but I could retire anyway, I did work at the first 4 months of chemo but that was it--But my job was a supervisor with the state of IL so if I showed up that was more than enough brain power that I needed so it was never a worry and I thought I was going back to work again it was a State job, I always said keep a low profile and no one will even know u work here so I was going to go back with as much confidence as the guy on the corner selling newspapers, same thing So stresswise nothing bothered me, But u women are professionals and that's a whole different story, people really depend on u so there is a lot of stress, u need a different kind of energy to work, my energy was walk across the street and someone made the coffe and I did what I needed to and wanted to do. Big difference. So I can see why it coild be challenging in that environment. But all going well u will get the surge u need to get over this as much as possible and be as smart (maybe smarter) than before U women did it once if someone else can do it so can you.
OK my attention span is past it's limits so I'll close for now--remember I read everything I just don't post much.
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Momx2- hang in there - sending you gentle hugs and keeping you in my thoughts!
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Fluff I just took the break. It sounded like (based on what my NP said) my onc was more concerned about the back & neck pain than the depression. Also sounded like my onc is going to send me to yet another doctor if I get depressed on this med to be treated. How many doctors do I need to see. I will be seeing more doctors than I did during treatment. This is unacceptable
Agent99 HER2+ isn't as bad as it used to be matter a fact its one of the better ones. There are lots of treatments (Herceptin, Pjerta) Don't get caught up in some of the old information online. Also remember that statistics out there are too general. They don't look at your specific situation. Also many times the statistics include people who do treatment + People who don't do treatment + people who only do some of the treatment. For example my onc told me that if I did all the treatment my chances of remaining cancer free in the 10 years since I was diagnosed (based on my age, stage etc) was 86%. If I look at stage IIb online I see it as slow as 60%! I'm almost 4 years no evidence of disease. I'm sure that 86% is much higher now. You have no nodes and a tumor under 5cm… that's a very good thing!
We'll save the famous speeches for later
Yay linda
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thank you thank you please give me allll your speeches! I am a little scared and overwhelmed!
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agent99, Here's one we like to give. YOU CAN DO THIS. No one would ever say it will be easy, but you will get through it.
To repeat, don't Dr. Google! If you can't help yourself at least come and ask rather than drive yourself crazy with your imagination.
Much love to all.
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Fluff - my understanding is that Tamoxifen blocks estrogen from being taken in by cells. AI's reduce the amount of estrogen produced in your body (from sources other than your ovaries only - that's why you can only take it if you are postmenopausal). AI's do not block any circulating estrogen from being taken up by cells. Soooooo...if you wanted to use an estrogen cream to reduce sexual dysfunction, any amount that might get into the bloodstream would not be blocked by an AI - only Tamoxifen can block circulating estrogen.
My doc was ok with me using a tiny amount of Estrace when I was having issues but ONLY because I was on Tamoxifen. Fortunately I only had to use it for a short time - 4 to 6 weeks - and then my body seemed to naturally recover.
I'm sure this is not what you wanted to hear.
I'm sure someone correct me if I am wrong. 0 -
Linda..., my back was killing me on taxotere and carboplatin. about six weeks or so. . Right in the low part of my back like when you have a period. I stopped chemo at 4 rounds. I am 5 weeks out and I just now feel better. I say it is from the chemo
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Lago, ran across this article that made me think of you. http://www.drnorthrup.com/
womenshealth/healthcenter/ topic_details.php?topic_id=60 You are little with small bones, so I thought the part below was especialoly relevant. that and the fact it referred to birds, lol
- Women who have small bones may have low bone density NOT because of true osteoporosis but because their bones have never been very dense. A bird's bone is less dense than that of an elephant, but that bone is still strong enough for a bird.
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Yes I have read that before but I am definitely losing bone mass. My biggest lost was the first year (chemo and chemopause) Then I was fairly stable till last October. To date though I have never broken a bone.
Before chemo October 2010 to October 2013: spine -1.6 now spine -2.6
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moms-seriously 55 isn't worrisome. Mine did pretty much what yours did. I ended at 50 when I finished herceptin, but three months later, it was climbing back up. Now the TE Thing is a different story. The tissue expander trouble thread is excellent and helped me through when I lost mine due to a pseudomonas infection.
Dance-you are right, I don't want to hear that, lol. Makes me keep focusing on a hysterectomy so I can go back on tamoxifen, when I know I should be trying to avoids surgeries.
Agent 99, the queen of Google is here. I know they say not to, but I have too have a clear understanding if I want to be part of my decision making team. If you google, just ignore anything before about 2006 or 2007. Everyone is right, the old stuff is based on data that is relevant now. I suspect that since you have a similar diagnosis to me in size (my grade was a 2), you are probably looking at chemo with a year of herceptin. You will thank God every time you go for treatment of that port. And everyone else is right. We have many treatments now. If you have to have this disease, it is good to have the version that is "in vogue" for new treatments and researches. Lots of attention and dollars being put towards it.
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Agent 99. Welcome. But sorry you have to join the club. I would tell you not to google. But you will anyway. I am a nurse. Teach nursing. know better. And google the snot out of everything. Just in case. In fact-I often find things and take to my MO.
And saw my MO today. Had the discussion. He, of course, wants me to stay on Femara. Or an AI or Tamox. I have tried all the AIs and Tamox-with the same SEs. Since I had to stop the taxol sisters early and Herceptin way early.... And the usual "You should not have BC and you have a very highly aggressive form of the disease with a high risk or recurrance". No shit Sherlock. The stats mean nothing if I end up in the pile with mets. Discussed quality versus quantity. Told him I would continue-of course I want both quality and quantity-until the quality just sucks big green weenies. He did not like my continuing anemia. Reminded him I was always anemic. He reminded me I do not have periods now. I told him he is a smart ass. His wife is a nurse from France. I helped her finish some graduate classes and now I am going to help her prepare for her licensing exam. He was thanking me. I told him he kept me on the right side of dirt. Helping his wife was my pleasure-and it was-she is delightful. I looked at the people in the waiting room going in to the chemo chair section and so clearly remembered to fear of walking through the door each time wondering if I would have chemo-or if my counts would be too low or if my EF would have dropped too much-or if my temp would be up-or my chest congested. Two years seemed like yesterday and all of my life. i know all of the nurses mainly personally. Hugged one as i was leaving. She said to come over for lunch one day-something I did pre BC. Now---I don't know. They are all still friends of course--and family. But going for lunch-we ate in the lounge in the back of the chemo area. Not sure. I am thinking more of volunteering to lead a group for newly diagnosed. What I knew as a nurse was good. What I know as a patient is so much better. What do you guys think?
Hugs and love. Am pup sitting for a couple weeks. Have my obese rescue English Lab. A rescue lab rot mix. And a Golden that looks like a shag rug. They all sleep with me. Total weight in pup pounds? Close to 280lbs. And they ALL want to snuggle!
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momx2 - Wishing you lots of luck. If you end up having these expanders replaced you might want to consider Arnica Montana for about a week prior to and a week after the next surgery. I've taken it before all my surgeries except for one and I had so much swelling with that surgery and the left side developed a wound that wouldn't heal. This was on the radiated side so who knows if I would have had any better luck with Arnica but I made sure to take it this last time. My first PS recommended it and gave me a surgical pack of it but since then I've just bought it over-the-counter at Vitamin Shoppe.
I really do think that once these incisions are addressed and you have a game plan in place you'll start to feel better mentally. Wound-healing issues are very stressful, or at least that's what I've experienced.
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Agent99, I thought I was going to have a double mastectomy and call it a day - or that's the impression I got from the first radiologist who delivered the bad news. Talk about false advertising! Like so many of us here, I've had a serving of just about everything from the BC treatment buffet. The good news, as mentioned by others, is that we have several options and we are blessed to have Herceptin.
I was totally freaked out when I found this thread in October 2012 but these kind women helped talk me off the ledge more than once. There's so much information on this thread and it continues to evolve. And as moon said: you will get through this.
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Thanks Princessm - were you originally scheduled to do 6 rounds and it was cut short to 4? If so, what were the reasons? The back pain is not bad - more bothersome because I don't understand it. I have a high pain tolerance and rarely used to even take an aspirin and I haven't taken anything for this at all. But you answer helps as I may just be one of those that will get this as a SE from the chemo.
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Good Morning-Mx2 I never had any recon so naturally it's hard for me to understand, but I do know I really thought it as a 123 thing and done. I've heard different stories and it is mentally exhausting and physically tiring so I think u'r in the normal zone of this.
I certainly am not speaking for princess, but I think she just couldn'ttolerate this chemo. she was so sick--but she's explain it much better. All of us have so many different reactions to anything they do or gice us, it's hard to get thru some things.
Hope everyone has a good day=feel decent and stay away from google and try not to fear all this. Enjoy the weather
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MomX2 so sorry to hear about your Tissue expander.
I hope your PS able to do smoething about it. 0 -
Ladies, my Echo down to 57%, so what kind of exercise should I do to bring it back up? so far my daily exercise just walking . i walked daily 40min to 1 hr. thank you!
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Linda505- I have had the lower back pain too. The pain is worse when I stand. I think it is from chemo.
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I had a major back pain when I was in chemo. I couldn't walk. They said it was "deconditioning" whatever it hurt. Went to a chiropractor and he helped me walk again without pain. Then I saw him every 3 days for 3 weeks dropped down to 2 then once a week and been going once a month since. Insurance did pay. I didn't need pain pills after the first week. It helped. He even took X rays and I told him all the meds I was on so he knew I was osteopathic too. He's careful. If you choose to try that I'd be sure your chiropractor is as aware. I'm 59 and had never been to one before. Just a thought if you want to try that. You would know after the first tx if it works for you.
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HAHAH! She said "Suck Green weenies!"
That made me laugh. And called your MO a smart ass! lol!
Truly, my head is filled with all this great chatter, my mind can't reply....I just want a "LIKE IT" button that I can hit on the posts!
QUESTION: Is everyone here on CoQ10 for life? I take 200mg daily for heart health, resulting from the stress of chemo, just because my nutritionist recommends it.
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i know! susanhg123 is hecka funny!
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I take 360 mg. CoQ10 on advice of nutritionist.
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I tAke coq10 because my onc said it's good for you and he does.
I'm not sure there is an exercise to make your EF better. Just keep your normal stuff going. If you fel a little winded, back it down. It will hopefully go back up after you finish hercpeptin.
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