TRIPLE POSITIVE GROUP
Comments
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Sorry I've been MIA. This topic was removed from my favs.
My treatment center is not an NCI designated center yet one of the top 3 cancer treatment hospitals in Chicago. In my chemo binder there was at least 2 pages regarding sexual disfunction… more than any other SE. It encourages you to discuss this with your onc. If you are not getting answers from your onc then ask your gyn and or/change oncs. There are good, bad and mediocre places to be treated and MDs. It is our responsibility to choose the right one for us and not blame it on the treatment. My onc and NP are both women. My onc is also head of medical oncology at my treatment center so I'm sure she has a strong influence on what goes on.
BTW my sister went through menopause naturally. Her hot flashes were hell and was she ever moody. My hot flashes were mild and I think stopped 5 weeks after chemo (I might get a warm flash or something when I eat lots of spicey food but I'm not sure if it's really a flash or just me getting warm from eating spicey food). I never got mood swings.
Cindy I had both eyes water… taxoteres. Runny nose is common with Herceptin.
Fluffqueen if your eyes still tear it means they are dry. Try using artificial tears (not Visine)
Ashla if that list of foods you posted is true then between what I eat and the EDS I must be a boy by now. Don't worry about the broken forum. Keep taking your ESD.
bcbarbie I was not saying that bases on anything you said. BTW there is no "r" in my screen name. You must be from New England. Always dropping "r" from some word then adding them to another. Anyone have any good idears where to get Pizzer, we can drive the cahh.
Kayb I had no SE the first 3 months on Anastrozole. Then I got some stiffness in the morning and while sitting too long like Tonlee. I too never took and meds except for OTC for the occasional headache or cramps.
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Ok, I asked this yesterday when the blog was possessed so I'll ask again.
Went to the (new) surgeon yesterday to discuss port removal and he wants to do a PEM test/scan....it is basically a PET scan of the breasts. He recommends this yearly because he says it will find things that mammo and ultrasound will miss. Sounds like a very promising test.
Anyone heard this one or had it done? Left a message for my onco too.
Thanks, Arlene
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Lago, arleneA, i do think the blog is possessed!
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Arlene - I remember reading about a PEM, but I don't recall specifics. I remember thinking it was really new and the verdict was out on whether it was reliable or not. That was just one article though, so, it wasn't a thorough analysis on my part. Wish I had the article I read, but I don't!
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Arlene,
I am just a tiny bit jealous that you have medical professionals OFFERING tests....lol. I'd go for it. But then, I haven't been tested out the ying yang...
I saw my PS and he said everything looks good. I am still wearing this annoying band. But I have to say, he did some pocket work, and had to loosen the lower part of my pec...and where he did the muscle work, is so FREAKING sore.....if I jar it, literally, it takes my breath away. So when I walk I have to practice the glide....you know, like walking with a book on your head...I look super goofy...but whatever.
I am still in Texas. I have not worked out at all in 11 days, or seen my kids. (Which is making me grumpy.) I think that is the longest downtime EVER, or at least since I was about 18. Even after MX, I was back on my cross trainer (sans hands) about a week out.
Whoa. My body has changed. It must be menopause! I can't believe how fast my muscle is turning soft and flabby. I've taken a week off before menopause and had no issues. My body is not very forgiving now. MUST be menopause. I mean it can't be all the wonderful Mexican food and Margaritas.....
Everyday I explore a new part of Texas. Yesterday was a small, affluent, community about 30 miles north of San Antonio. Beautiful place. Gazebo in town square, coffee under a buck....loved it. Shopped til the boob throbbed. I think I should get a t-shirt with that on it!
Also a woman struck up conversation with me in one of the boutiques. Asked about my band....it is hard to completely hide under tank tops! Which led to a conversation about BC. Her mom is having a double MX next week!! And her mom is not asking any questions. Just doing as told. ~sigh~
But as we talked about causes of BC, (obviously this woman is tuned in now that her mom has it), another customer entered the store, listened a second and said:
"Oh, they know what causes it honey. It's diet."
I looked at this grossly overweight woman and said, "If it was diet, I wouldn't have got it."
You should have seen her face!! Priceless.
I don't know what causes BC, but the woman was just so darn smug about it all. I needed to wipe that smug look right off her face.
Um, did I mention not working out makes me cranky?
And one last anecdote. I love top shelf tequila; Patron, 1800 Silver. Therefore one of my favorite drinks is lime margaritas on the rocks. But generally they are FULL of calories. But as you know, there are alternative lower calorie options for just about everything.
So, I was at a Mexican grill and the conversation with the waitress went something like this:
Her: "Would you like to order a drink from the bar? We're known for our 35 flavors of margaritas. And it's happy hour."
Me: (WOO HOO) "Do you have skinny margaritas?"
Her: "We have large and small. That what you mean?"
Buwhahahahaha.....they don't do anything small and skinny in Texas......
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Ashla - what is an SO?
TonLee - Can't believe that lady said that! I agree about the menopause and muscle thing.
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Omaz,
Since she walked in during the middle of the convo, she had no idea I had BC...the smugness set me off. So smug because SHE didn't have it, but she sure knew what causes it.....grrr.
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lago - I think the post with largo actually came from evebarry, not bcbarbie - I think the correct screen names during the possessed page are at the top of the post - the avatars at the left were incorrect.
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Thanks Dance and TonLee. If the insurance approves it, I suppose I'll have the test done. Should be another good baseline.
TonLee: Sounds like you are thoroughly enjoying TX. Imagine that, diet causes breast cancer. I think the number of bc cases (and they are high enough) would multiply. I do feel that (and one of my oncs too) that environment might be playing a big roll. Hopefully one day, they will unleash the cause of it. Enjoy those margaritas TonLee.
Arlene
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Yipee, leaving now for my last radiation treatment.. Glad to say that I had no side effects from the rads. Now it is Herceptin until January 2013. Can not wait wait until I can post my last Herceptin..So far nails looks ok-had an echo last week,will get results 08-01-12. This is such a long process...Just waiting for my hair,eyebrows and lashes to grow.. UGH not seeing much progress...
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Tonlee my body, in spite of exercising and upping my weights a bit is still not what is was 2, even 1 year ago. I notice is mostly in my mid section. It's not anything others would nice but there is a difference. Chemopause and lack of estrogen is a big part of it. I also notice a ton more age spots.
Didn't mean to come over harsh about the largo/lago.
Don't me started on stupid things people say to BC survivors. I had 2 this week. I was at a networking event last night wearing my sleeve. Woman was trying to recruit me to some committee and I explained I was a bit too involved right now with the ACS strides event. I know she could tell I was a survivor). The first thing out of her mouth was this story about a woman she knew that was young (41) and recently died after her 10 year struggle. (I think the woman thought I was in my 40's)
2 days ago riding in the elevator of my building with several people, one person asked about the LE sleeve and I reply "I have a circulation problem" Another comments "Oh I didn't realize it was over your entire arm, barely noticeable" Then this guy says "Is that for lymphedema? My mom wears one too." Geez you'd think with my nice but non detailed answers that they could tell I didn't want to get into this. Even one woman said, Wow they really gave you the inquisition about your business.
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I think sometimes it is kind of like when you are pregnant and complete strangers want to pat your belly, or tell you stories about difficult labor!
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Has anyone that is triple positive had their ovaries out..had my estrogen level checked and the darn things are still producing ..thought I was at least peri menopausal since I havent had a period since march 2011 due to chemo...anyone know the pros and cons
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Choosing an onc is really important. I did the same thing Lago did -- my cancer center is not an NCI center but is among the top three cancer centers in Seattle. And on regional survey, my onc was voted by patients and peers and support staff to be the best. He was also the only onc that was well known among medical providers and patients even in my city in Alaska. My PCP has the highest qualifications of all the PCPs in my city, and I think he is truly the most dedicated of all of them. Yet neither of these docs were responsive at all about this one issue.
The difference really is that I was treated 10 years ago. I appreciate the many posts in response here. I'm glad to hear that more effort is being made NOW in some instances to at least provide written materials to patients to help them understand what lies ahead. That shows there has been progress in some instances. There were no binders provided to patients when I was treated. There weren't even handouts given.
However, it isn't enough to provide pages in a binder to patients. They need to also make sure that the oncology nurses who are there specifically providing introductory sessions to newbies are also specifically instructed to introduce those materials to the newbies PRIOR to and DURING the decision-making process. That certainly was not the case just one year ago in the cancer center I so carefully chose to work with.
The reason I am posting about all this is because I am pushing for more than that. The oncs we see had to qualify first as doctors. Doctors -- male or female, onc or PCP, should get over it in OUR behalf as the professional medical providers that they claim to be. If they are going to be qualified to decide upon very difficult and toxic treatments, they should step up to the plate and specifically offer to discuss the intimate issues involved as a matter of legal responsibility. They are responsible for providing true informed consent, and that includes making sure the patient has an understanding of the possible outcomes as a result of treatment. Why should a common problem resulting from treatment that has to do with sexuality be shoved onto ob-gyns or other physicians or NPs, simply because it is sexual in nature? Is it because oncs would rather we not know when making our decisions about toxic treatments that have many unpleasant aspects about them?
I look at the history of scream cream on the forum here. It was the patients, not the oncs, who had to introduce and request that from their oncs.
I agree with Lago. It is our responsibility to make solid choices as we go along. As a long-term survivor of HER2+ bc, I am a rarity posting on the forums, and I am taking the responsibility to advocate for adequate basic professionalism as something that should be standard for people who are empowered to recommend very difficult and damaging treatments. I'm not interested in making excuses for them, or for encouraging continuation of codependency by them.
A.A.
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I agree with some of the discussion that the docs and nurses need to provide the information on side effects. However, it is our responsibility to read that info and then ask follow up questions. I do not expect my doctor to read it all with me or go over it point by point.
AA-I agree that there was probably a lot less information given out a decade ago. It wasn't that long ago that sex wasn't even discussed. Some folks are still uncomfortable having the discussion.
When I am advocating for something BC related now, I try to emphasize that the individuals read and research and ask questions so they can make the right decision for them. And then go back and read through it again a month later when things have calmed down. A friend recommended that to me and it was the best advice. One, we forget in general due to the stress of the moment, and two, once chemo sets in, chemo brain takes over. Might have to read it three or four times. LOL.
Topical Vascular Enhancer---I love it. TOVANCER. No one would ever know. Although I do get some enjoyment with taking my KY Intense to the CVS register with the teenage boy that works there. I just hand it to him with a big smile on my face. He turns bright red and looks horrified.It's the little things...
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Fluff, I have got to try that. I'll look for the youngest person on the register, and whisper "it really works" when I leave.......
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Might be even better to leave it out in the bathroom where your kids can see it. That will shake them up.
My 27 year old son with the ACL surgery a week ago stayed at the house. I walked out of the shower in a bra and underwear with a towel around me. He was standing in the hall way. Gave me a lecture about being walking around the house undressed. REALLY? In MY house. He is lucky I wasn't naked.
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Hi Sherry.
We discussed the ovarian issue several times earlier in this thread......you will find the information on the June 7th page....
I had an Oopherectomy because my periods came back. Everything I've read says Ovary supression/removal is only beneficial if your estrogen levels get high enough to start your periods again. Most OB Oncs won't consider an Ooph (unless BRCA positive) if you're not bleeding every month.
I will try to find the page # where we discussed the benefits/cons and the latest studies. (edited: see above)
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My center in NV was so thorough that it was almost annoying. BIG book with tons of information and staff even went through the book. Met with the nursing staff, met with the nutrition staff, met with the counselor (for emotional issues). I don't think they left MANY stones unturned. I don't remember too much about sexual issues but I assumed those would exist. Yes things are MUCH different now than even a few years ago but that might be center to center.
Arlene
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Thanks to TonLee for responding ...just really scared ...my level was 36.6 so still producing..but any if would greatly appreciate it..just afraid if I get my period than the tamoxifen wouldn't work..but thank you ..sherry
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Tonlee, My daughter lives in San Antonio and she gets skinny margaritas somewhere there. I don't like them as much....needs a little more orange liquor....aka syrupy liquor....no wonder I have cancer...you know ....diet, alcohol and sugar.
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Omaz....
SO...surgical oncologist. My MO said my SO is in charge of my breasts.0 -
Sherry,
I couldn't find any definitive studies that proved my natural estrogen was being completely blocked from BC cells. So I do understand your concern. I did find research that showed a def. benefit of suppressing the ovaries, or Ooph, plus Tamox as opposed to just Tamox alone for ER+ women who are having their periods again.
A lot of these studies came out of Asia, but not all. And some show up to 35% survival advantage. My OB Onc actually mentioned some research that I didn't have access to, that also supports an Ooph. But by then I'd already made my mind up.
The negatives are women who are under 45 and have Ooph have a higher (non BC related) mortality rate. Heart disease, stuff like that, as I'm sure you know increases with menopause.
If my periods wouldn't have come back, I'd have been happy with just Tamox. But they did come back....worse than ever. I didn't want to risk my natural estrogen, high because of menses, beating the Tamoxifen to any residual cancer cells....so I had those puppies removed.
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Nance,
If you get the opportunity, please ask her WHERE. I've been here almost two weeks and get the same version of the answer I cited above when I ask. I'd make the trip just to have a few....lol
For now I am skipping the margarita part, and just drinking the tequila on the rocks with lots of water.
I don't believe alcohol causes breast cancer anymore than I do nursing was supposed to reduce my risk. I didn't survive all this crap to stop living.
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I nursed five children, three years each, fifteen years of breastfeeding. More research please.
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RE: PEM Scan! Talked to my onc who said the test is completely unwarranted for me. She says I am NED and it is not needed - someone is trying to make money, it appears. She says if I show signs of BC again, then it is an excellent test. She says I've been through enough testing and enough of everything and highly suggests I NOT have the test.....it is expensive. I'm thinking my insurance won't approve it anyhow. Whew!
Then, I got my "t" scores from my PCP today who said if I wasn't on the Arimidex, I shouldn't even be on Boniva. She will talk to my onc tomorrow and let me know what the 2 of them think. My scores had very little change since 2007. I'm hoping the collective brains will agree that I don't need them and to screen me every year versus every 2 years....guess it all depends on how quickly you can change from osteopenia to osteoporosis.
Arlene
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Nance,
Exactly. I want to file a complaint! lol
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Tonlee....same. (That's how my teenager responds when she agrees) Your young, you probably get that lingo.
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TonLee,
Things change all the time so remember that mine is just one opinion here, but I am puzzled to hear the reluctance to do some scans for a HER2+ who is stage III.
While I never had a PET as a HER2+ who is stage I, I have had CTs and MRIs for symptoms. Are you saying that your onc doesn't do those, either, for you?
A.A.
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My chest got tight after walking fast but it would go away. Be sure to mention this to your onc. I kept a diary of the SE and when they appeared and printed it out every time I saw my onc. You will be surprised what you will forget. I found my onc & nurses loved that I did that.
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