TRIPLE POSITIVE GROUP
Comments
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flaviarose, Magic Mouthwash is by presciption. Your MO or PCP should be able to prescribe it for you.
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flaviarose I had a 6.5cm tumor (IDC & DCIS) in a barely 34B breast (that's pretty small). No choice I had to do at least an MX. There was a small amount LCIS in the other breast too as well as some other suspicious areas that would have to be biopsied every year so the recommendation was get rid of that one too.
Don't look back. Survival rate is the same.
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Lago, so if I’m NOT having a lot of SEs from tamox, I might not be metabolizing it? It is my understanding that there isn’t a connection between how bad your chemo SEs are and whether it’s working or not. Actually, the women here who had neoadjuvant treatment might be able to say whether that was their experience. Forever, how were your chemo SEs, as they go?
Pbrain, MO said that your estrogen levels can bounce all over the place so you can’t just take it one day and have it be a reliable indicator of whether you’re in menopause or not. But I have no background in this stuff so maybe I’m garbling that.
Flavia, interesting about the diet thing. I’m also a grazer and tend to eat more at night, though I’ve never been overweight. The last few days somehow I’ve just been totally “off the wagon” – eating brownies, white bread, blah blah blah. Hopefully I will get it out of my system and can go back to being a bit more self disciplined. Cancer IS a good motivator, but I don’t really want to motivate myself based on fear. Though I guess if it works….. I did the cold caps btw. They are definitely a PITA during the treatment, but then you have the entire rest of the time when you don’t need to deal with wigs or hats or any of that stuff, and also, at about 7 mos pfc, I have about 1 ¾” hair, which is quite curly (like all my hair) and curls up to nothing. It would have been a long time before I could have gone “topless” if not for the cold caps.
Oh I have another question for you ladies – I’m busy and have worn underwires for like ever. I’m told that’s not good for lymphedema, or avoiding it. Left boob is now a bit bigger than right boob – it was before the LE on right boob. I’m thinking maybe underwire on L side and not on the other, but a bra made that way…. Does anyone know if they sell those or have any thoughts on that? Thanks!
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cypher, I had neoadjuvant chemo. My SE's were not fun, but not as bad as others have been. I continued to work part time and walk a mile a day when I could. I had at least 2 lymph nodes that showed up very positive on the PET prior to chemo. When I had ALND surgery after chemo, all lymph nodes were clear. So it looks like I had a complete response to the chemo. IMHO I think the SE's are more indicative of how the rest of your body is reacting to the assault of the drugs, the low blood counts, etc. and not just how well the drugs are doing attacking the cancer cells.
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cypher not having SE from Tamox or SE doesn't necessarily mean it's not working. If that was the case oncs would be trying something else if no SE. If you are having SE then it's a sign it is but doesn't necessarily work the other way around. Lots of women have little to no SE and it does seem to work for them.
I have minor LE and wear underwires. I think bras in general can be an issue if you have LE. I try to find bra straps that are wide so they don't cut off circulation but if you have trunkel LE it could be more of a problem. I would consult your PT or Binney or the LE sites.
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thank you Bren58.
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Lots of history and very interesting info re the Her 2 pathway from the ASCO convention. Most of it is incomprehensible to lay people like me but enough that it is worth a read...http://chicago2013.asco.org/her2-pathway-breast-cancer#.UarNZYpKZ5I.twitter
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We pass McCormick place (convention center) every year on our way home from the 57th street art fair. That's where this is taking place. I always wonder what's going on. Lots of pharmaceutical ads on the street.
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Ashla, Thanks very much for your most recent post on the four different agents used to annihilate the HER2 molecule. I found it interesting that the HER2 protein molecule does not have any known ligand ( a signal-triggering molecule that binds to another molecule), so oncologists do not know what stimulates the HER2 molecule into action.
Cypher, since having a lumpectomy, I opted to wear wire-free bras as I find them more comfortable. A lot of fear mongerers say on various "Dr. Google" websites that wearing underwire bras may cause BC because lymphatic drainage is impeded. Well, Scientific American, a very reputable, well-respected magazine in the academic community, wrote a short article on the rumours six years ago. I am attaching it to allay any fears you have. If you want to buy a wire-free bra, I buy WARNERS #02060. Here is the link:
http://www.scientificamerican.com/article.cfm?id=fact-or-fiction-underwire-bras-cause-cancer
I save the underwires for nights when there is action in the boudoir
as the underwires make "the girls" look great. Just read an article from medscape website. It is the second major, long-term study confirming that 10 years of Tamoxifen is more beneficial than the standard 5 years, especially for pre-menopausal women. Well, all I can say is that if I can make it to five years, I am tossing the "white devil" with great relish. Here is the article:
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Lee I have said this about all the studies from the beginning after all these yrs of dealing with this crap everything changes all the time. I'm not saying I think all are wrong--they have to get it OK sometimes--but (my theory) cancer has no rules and everybody takes all meds and chemo, rads differently no matter what u diagnosis has been, and healing is different for everyone--it all comes under the same name but not the same results. I know I always think outside the box, but this box doesn't end to me.
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<<it all comes under the same name but not the same results.>>
So true, camillegal!
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Appreciate all the links in this forum to good resources. Thanks, all.
Anyone else have their hair stop growing, after it was growing well post chemo? Finished chemo October. Last herceptin coming up in a couple weeks. Started Tamoxifen in December. Hair (everywhere) was growing.. slowly but surely.. but has stopped growing at all in the last six weeks. Meaning I don't have to shave legs or armpits, but it is concerning. Haven't found any resources or cases that are similar. (start and stop) Onc has no explanation. The pixie cut look is working... but I'd like to know it is going to grow again.
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FeelingtheMagic I know some ladies just grew slower. Herceptin really slows growth for some women. It might change. Also hair grows in stages. Usually you don't notice it since your hairs are all in different stages but with chemo maybe they are all insync. Maybe you need to wait a bit more.
But, Some people did get Taxotere induced alopecia. I hope this isn't happening to you. While some folks are not completely bald, the hair that does grow back will only grow about an inch. Check out this thread: linky these ladies know a bit more about it.
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Feeling the---- My hair started growing right away, then stopped too for a while and it thought that's it --my brows came back first--and one lash at a time and never got the length they used to be stopped midway. But then my hair picked u growing but not as thick on top but thick in the back??? I wore scarves for a long time. So I hope it's just slow growth for u.
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Feeling....
My hair grew back very slowly and @ various times seemed to be barely growing. The hair on my head seems to have picked up speed since I finished herceptin. I'm having hair issues with anastrozole but that's another matter. The hair on my legs and underarms continues to grow very, very slowly.0 -
Hope everyone enjoyed their summer so far!
I need to move to another state soon so need to find a new family doctor. Just wondering if a family doctor can prescribe letrozole or similar meds? I am on it for a few months now. So usually how many pills can they give to you at one fill, I mean as insurance company allows? Thank you.
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As a survivor I don't think I'm alone in feeling that our modern medical systems don't seem to quite know what to do with all of us? I don't write on my blog every week but this week I did write a bit about this if you want to take a look... The link is in my signature.
As for hair - I finished "hard" chemo a year ago and Herceptin in February and it is still soooo short. Only about 2.5 inches long and my fringe is shorter at about 2 inches :-/
Jenn0 -
Shaved my head today at beauty shop..left some hair on top with spikes! One of my good friends showed up and shaved her head with me...cried thru the whole thing...my mom and daughter cheered us on and cried too....
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Don't know if this applies to us her2 pos ladies.
“If treatment of the axillary lymph nodes in breast cancer is deemed necessary due to large tumor size and nodal involvement, radiotherapy to the axilla is a good alternative and it may be -- for us it is -- a better alternative to surgery because it’s associated with less side effects and has extremely good regional cancer control,” Rutgers concluded at a press conference.
“We have shifted from mastectomy, 20 or 30 years ago, to breast conservation, now we will shift from complete axillary treatment to axillary conservation strategies.”
http://www.medpagetoday.com/HematologyOncology/BreastCancer/39560?utm_source=cardio-meetings&utm_medium=email&utm_content=mpt&utm_campaign=DCH0 -
ChickaD,
You're in full fledged battle mode now. You go girl!!
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Hi to all of you!
Just posting an article from Medscape website. The focus is on a study that seems to indicate that weekly doses of paclitaxel (taxol, onxol, Nov-Onxol) are less toxic than bi-weekly doses. If it affects you or you are interested, please click on the link below:
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meglove My insurance (PPO Aetna) will only allow me to fill one month at a time. My old insurance (PPO BC&BS) would let me fill 3 months at a time. I get my Anastrozole filled at 3 months because I don't go through the insurance. Just cheaper for me to purchase at Costco.
Ashla I know that standard care (3 years ago) was to take the level I nodes with tumors over 5cm even if there was no evidence of invasion on MRI/palpable. That has since changed. Kinda sucks because I had level I nodes (10) removed, no invasion but I do have LE.
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When my hubby got home from work he said "You look beautiful...just like a moviestar"....needless to say the waterworks started, made me feel better about my shaved head......I love that man! ♥
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Lago, thank you. I found one article about these two drugs. It seems not much difference. I tolerate letrozole very well but it is quite expensive. I haven't tried Anastrozole. Do you experience any SE from it?
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ashla, thanks for the link to the article about nodes/radiation. I'm always looking for new information on that subject.
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ChickaD, like ashla said, you're in full swing now. Have you had any scalp pain? The sooner the hair goes, the quicker that pain goes away - or at least that's my understanding of it. The poor hair follicles just can't take the weight of the hair anymore (or that's one theory I've read).
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meglove There may be a reason why your onc recommended Letrozole and not Anastrozole. I have one friend that was prescribed Letrozole because her onc told her they are finding it is better for women in their 60s. I'm not sure if it's better overall. As far as SE I have some stiffness in the morning but it goes away but goes away as I move around. I had more stiffness the first year. I work out regularly. The first year I wasn't doing a lot of strength training.
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ChickaD, that is a very good friend to shave her head with you. A good friend of mine came with me to my wig fitting and tried on a few herself. When they put the wig liner on her, she looked like Dopey from Snow White because her ears are so big. She asked me to please not ask her to shave her head for me. We laughed really hard
Thanks for that article ashla. I had nine nodes removed, have LE and am starting rads next week. Six of the nine removed were positive for tumor, so I guess removing them was the right course at the time. But the comparison is interesting.
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Im confused myself with this Androgen thing. I can tell you that I saw my onc last month the last thing she said was my tumor had a good thing. I said really! she said Androgen. So why is this good? Anyone knows?
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i have my first oncologist appointment tomorrow. i found out today that my mamaprint came back as high risk for reoccurance. so i know that im in for chemo. im also estrogen 10% positive, progestrogen 10% positive and her2 positive 40%. my brca1 test came back as positive as well.
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Netty, I have no idea what that means. No one ever mentioned that to me.
Karen, my 22 year old daughter had no problem telling me if I looked bad. She was picky about the wigs I had also. I have mentioned before that I wanted a Farrah Fawcett styled one in the worst way. Tried it on, and looked at her, and she couldn't control herself she was laughing so hard. Husband and son were trying to be nicer but were having a hard time with a straight face.
Lago, I know triple neg and triple pos are two of the more agressive types, but if you are hormone neg and her2+, is that even worse because the genetic component causes faster growth to the non hormone driven cells? Just curious. Seems like it would make sense.
I am fighting the first cold/sinus crud since diagnosis. I forgot how crummy you feel.
On the tumor marker test, my onc does not routinely run them. I begged and he gave in. I wanted some kind of baseline. Somehow 22 does not seem a long way from 38. Assuming nothing crops up in the next six months, I think I will see if he will order a pet scan next February, when I will officially be three years out. Then maybe beg for another one at five years. See...I am looking ahead! Lol.
Now that I have been fully off Effexor for ten days, I have noticed something positive...increased sex drive. Woo hoo! However, while I don't think I am having more frequent hot flashes, I think they might be more intense than they were. A LOT of sweating when I have one with some mild anxiety feelings at the same time. I am going to try not to go back, however.
Oh, and my onc kept me on tamoxifen yet. It will be two years next month. But, at 55, I was still having regular periods with no sign of menopause when this all started, so he still thinks I could start back up, lol, and that my menopause could all be residual chemo driven. What a nut.
I would have no problem taking tamox for ten years if the hot flashes would just go away. I can deal with the rest.0
