TRIPLE POSITIVE GROUP
Comments
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I drink very little. I mean I can't count how many glasses of wine etc. I had last month because I didn't have any. Still got breast cancer. I'm still going to drink my wine every so often (or tequila). Must be all the hormones in the chicken that did it…
I didn't go through treatment to not live. Granted I won't smoke (tabacco, pot or crack) or shoot heroine but most things in moderation is fine by me.
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Hi Ladies,
I have been following your posts and just had to weigh in on drinking. Ok, I don't drink at all and I have breast cancer. Maybe I should have a few now and relax a little! Trials, statistics, and too many fingers pointing to a magic bullet. I seriously doubt drinking causes breast cancer. My mother had breast cancer and she didn't drink either! (Different kind, no BRAC) I say all things in moderation.0 -
Went to see my mo today for my 3 mo checkup and cried in front of him . It's only the second time I've cried in front of any of my mds and both times it was because of vanity issues. Once when my previous brand new post chemo eyelashes fell out and today because my hair is thinning. He was so wonderful and understanding. He told me only 30% have hair loss but I told him it might be higher and women don't want to complain. He did a thyroid test on me but I know it's the AI.
I asked about minoxidil and he says they don't really know if it interferes with the AI but didn't tell me not to use it. I also discussed the studies that show tamoxiphen can decrease breast density because I have very dense breasts. He said that although it is not the protocol we can think about switching to tamoxiphen maybe at the 2 year mark for both the hair and breast density issues. He said AI 's are deinitely better for post menopausal women but tamoxiphen is good too.0 -
Oh Asla I'm sorry u feel so bad, but I don't think that's vanity, I feel like u just want things back to what they were before BC. Cuz to me so manythings remind u of it. And so what if it's vanity u can feel anything u want, u physically and emotionally have been thru hel- recovery isn't so fast that u just feel nothing about it. So give u'rself a break.Healing is a whole other process and it takes time and again every one is different.
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Oh Miss Ashla.... I want your hair back to.... and mine.... today I HATE BC.... so many changes.... such a long road ahead for me yet... maybe we should all have a pity party and DRINK UNTIL WE CURE CANCER !!!!
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Ashla, I have been on Tamoxifen for 11 months I am very much post menopausal but my MO would not give me Al due to my osteoporosis.. Hair thinning is a side effect of Tamoxifen too.. My hair is growing but it is very thin and growing so slow... I am 13 months PFC and still wear my wig when I go out...
Re: Drinking--- I never drank and still I got BC.. There are so many studies I never know what to believe.
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Thx Camille and ChickaD,
My mo was very understanding. And I agree with whoever saud it...have a drink once in a while if you enjoy it. I was never a drinker and I got breast cancer. Whatever time we have left and no one ..even those who appear to be healthy...knows how long that is should be spent as happily as possible.0 -
ashla My onc knows I'm using Minoxidil, restarted it about 3 weeks PFC, and never said it was an issue. My NP talked about switching to Tamoxifen when I expressed concerns about my bones and staying on the drug an additional 5 years. I too agree it's more than 30%. I have receded since chemo and I'm sure it would have been a lot worse if I wasn't using (women's) Minoxidil. I only use it once a day though… and I've never complained about it because my hair still looks good. I say go for it. He didn't say no. Maybe have a glass of wine, beer or Saki too
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Thx Lago,
I started using it when you told me about it and I too use it onlyonce a day. I told him my friend from my breast cancer forum told me about it and he liked the idea I had a support system. It does seem to be growing back in front. I hope it stays.
This is getting expensive. Minoxidil, ZQuil to sleep...maybe Latisse for the lashes....i
F... BC!0 -
Ashla, you hang in there. Oddly enough, I just noticed my post-chemo eyelashes fell out on Saturday. I was swimming (and drinking wine) at a pool party, didn't put mascara on on Sunday and today went to put it on and once again felt no resistance against the brush. But it's all part of the whole stupid thing. I lost my left big toe nail this evening too. This crap kicks butt. I'm using minoxidil, Walgreen's brand, cheap, good stuff. I wouldn't worry about it, most topical or optical things don't get into the blood stream that easily. Give it a try.
And yes, I am the wino of the group, of Scottish and Welsh heritage. I've always consumed gallons of wine on a regular basis, so I guess I am the poster child for alcohol causing breast cancer? But my Scottish cousins put me to shame and none of them have it, nor do my mother and sisters. I honestly thing a big connection is not having children. I just see that so often...I don't know, until they know, I'll be compliant with meds and try to lose weight.
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Does Arimidex or herceptin slow hair growth?
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ashla I paint it on my eyebrows too. I have a little growth from it.
LizA17 Herceptin slows the growth a little bit
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I've said it 1,000 times I know--but I'll say it again---There are no rules in getting BC and no rules in SE' from anything from BC--It is it's own entity for each of us.
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My chemo ended oct. 2012, and my eye lashes fell out shortly after. They should be back be normal length now, and they are only short-n-stubby. What is the deal? Is there anything that will help them grow back to there normal length? Any advice, grateful I would be.
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Ladies, re the herceptin E/F problems, TonLee (haven’t seen her here in a while btw) has a hypothesis that you’re less likely to have problems if you have a slow infusion rather than a fast one.
I am also really grateful that I did the cold caps, and all this discussion about hair loss makes me even more so! I feel like my hair is receding and it is definitely thinner. The new hair that has grown in is about 3” long, which isn’t all that long for me considering I stopped chemo in early November – so 8 months. Jeez that’s really slow. Especially for me. Some of my eyelashes have not grown back – there is like an 1/8” that is just … missing.
Ah, bc, the gift that keeps on giving.
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And Ashla, frankly, what's wrong with being vain? There is absolutely nothing wrong with caring about your appearance- - why shouldn't you?
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I would agree that slowing down the infusion of herceptin can relieve se's. I started having horrible reactions to herceptin as soon as I was finished chemo, i.e. just getting herceptin on its own every 3 weeks. I broke out in a rash during the infusion, and spent the week afterwards feeling fluey and nauseous.
Luckily my onc listened and I now have the pre meds normally given for chemo and the infusion is run over 1 1/2 hours instead of 1/2 hour. I also have anti nausea meds and cortisone to take for the week after the infusion. Not mad about taking the cortisone, but it makes a huge difference to my QOL so I figure its worth it.
I stopped chemo in march; I lost my eyelashes twice but now they seem to be growing in fairly normally. My hair is growing too - I have enough to go without my wig - yay!!
The only thing I used to help my hair is a shampoo recommended to me by my pharmacist. It's Phytocyane, made by Phytosolba labs. They're in New York too, so should be available in the US? I noticed my hair thickening up with a week of using it.
Having hair again goes a long way towards giving me back to feeling of 'normal'. There's nothing wrong with wanting to look good - if anything it's a lot easier to have a positive attitude if you feel you look good!
Nicky0 -
Camille,
I hope you know how much we love you...0 -
Nickyj,
Don't think I've met you before. If you're new...welcome to the forum.
Most people seem unaffected but I had one 30 minute infusion and I was knocked for a loop! I was so tired , weak and foggy I really don't know how I made it home safely. In fact I was so loopy I didn 't realize I was loopy. The effects lasted at least a week. It took
Me a while to realize it was the infusion that caused it.
Thanks for he shampoo tip.0 -
Live2Laugh2Love it tooks months but my lashes did get longer again although thinned out on Anastrozole
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NickyJ and Lago...
I ordered the shampoo online..$24 including shipping. I'll let everyone know if I notice an improvement although it may be difficult because I think minoxidil has helped.0 -
I lost eyelashes while on Femara, and used Latisse. It takes a while to start its effect, but I've never had such pretty lashes. It's not cheap though, and when I went off Femara, I stopped using it, and you have to keep it up to keep the lashes. Now my lashes are like they were before starting Femara.
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Live2, I just got some latisse too. I don't think I had much of a chance to see if it was working since my eyelashes all fell out again this weekend, but I'm going to keep using it. I hear it works well, and for me it is worth the cost.
Cami, I think you should make a meditation tape for us that states over and over we can't try to figure out how we got this. I do kick myself around for my wino ways...
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Good morning Ladies--Welcome Nicki I was going to suggest latisse--altho I should get it myself, my lashes have never recovered and I stopped everthing over 3 yrs ago and my eyebrows have to be filled in--And for an Italian u usually just have one unibrow. My hair has totlly changed thin on top and straight but right now I'm so thriled it's straight I haven't done much afraid it's going to be frizzy again. LOL My back and sides are thick and grow like crazy--good thing my DD does hair and I for some reason left it white and I put colored chalk in my hair to mtch my nails.
Ashla u too sweet to me---I know I don;t contribute to anything like all of u do, u understand and research everthing that comes along and it still amazes me the welth of knowledge on this thread, it's like a Dr's log. But I just don't I stil see my Dr. every 3 months with all kinds of tests andI'm doing very well except for some goofy problems that have gotten worse but not cancer worse so I'm very lucky.
And Pbrain I've told everyone here my dad was the wine drinker like crazy , he used to make his own wine, whoa was that strong, then he stopped but never stopped drinking it my sister and I even made a commercial for the wine he drank and sent it in warts and all, they didn't use it, but everytime we even think about it we laugh--every "take" he'd drink a glass of wine well u can imagine after a few takes he finally said What the hel am I drinking--we yell that's a wrap. And sent it in. The point he was 96 ad died the way he wanted during the night without suffering from any disease. So he was happy.
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Lago, THANKS!! for the video. I opened it while waiting at a stoplight with my 14 year old daughter, who without my knowledge video'd me dancing and laughing at the stoplight as I listened to it then proceeded to post it on her Vine, which Im not entirely sure what that is, but I got calls from friends cracking up at me!!!
With the hair loss issue...I used the Penguin Cold Caps with great success. I lost eyebrows and eyelashes. The eyebrows now have about 10 hairs each and my eyelashes are short and incredibly sparce. One tiny are has no lashes. I tried Latisse. Its expensive!! It works only while you use it constantly. As soon as you stop using it, everything falls out. My friend is a rep for a product named LUCA and he keeps telling me it will work for the eyebrows and lashes, but I have yet to try it. Not much hair came back ANYWHERE on me after taxotere. I never need to shave my armpits, and I shave my legs about once every 2-3 months, and only because it makes my skin smooth. I also only got about 5 pubic hairs back (tmi). I am blonde, so its not terrible. I just stay armed with a brow pencil and taupe eyeshadow to draw brows back on. I do wonder if I hadnt used the cold caps if Id be one of the ones that stayed bald after taxotere. I wonder why this happened?0 -
Ashla,
Thanks for the welcome! Sorry, maybe I should introduce myself here, I forget where I have and haven't posted.....
Briefly, dx'd in July 2012 after a fracture to my sternum. Mets to bones and liver found, which led to discovering bc so straight in at stage IV. I had taxol and herceptin weekly until January, when I was taken off the chemo to do rads for pain in my spine. Then back on the taxol to finish, until march. Then I had a pet scan which showed NED!! I'm still on herceptin and also tamoxifen, which seem for the moment to be keeping me stable.
This is why the whole hair issue brought me to reply - my hair started to grow back while I was still on taxol. By the time I finished rads, I was just thinking about taking off my wig. But having to re-start chemo made it all fall out again!!! It was more upsetting the second time and I couldn't wait for it to grow back. Luckily I only had 6 weeks of chemo to finish and my hair started growing back pretty much straight away. That was march, and I now have enough to go without my wig all the time - about 3.5 cms. It's much shorter than any hairstyle I've ever had before but I'm delighted with it!!
Good luck with the shampoo Taking out the cost of the shipping, I think you paid about the same price as I did - good to know! I found that I went from a very thin covering of hair, with a receding hairline, to a fuller, more even head of hair in a few weeks. Now, just a few months later its growing back as thick as it ever was.
Anyhow, just wanted to say the waiting is horrible, but it does grow back - eventually!
Nicky0 -
NickyJ,
We have a few Stage IV ladies on this forum. I actually first typed " this is a wonderful place " referring to this particular forum but I edited it out. Truth be told the triple poitive breast cancer forum is not a wonderful place to find ourselves. But this one is filled with knowlegeable supportive and very wonderful women.......including you!
Thanks for the hair tips but more importantly ooowaaa on the NED!0 -
Ashla hahahaha
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Thanks Ashla!
Nearly typed 'glad to be here'.....but you know what I mean
The boards have definitely been my support group up until now and I intend to keep it that way for a long time!!
Nicky0 -
Hi, Nickyj. Congrats on NED! Cami, you are one of the mist supportive people on this board, and you know a lot. So glad you are on this board. Pbrain, just FYI, I had 4 kids, breastfed all 4 an average of two years apiece! And I got BC. My two sisters do not, and they never breastfed. You just never know.
My eyelashes are very thin, lost them twice. My eyebrows came back in slowly. My hair is thinning. And i just lost my chemo
Curls, I am sad, I actually liked them. My hair is so straight again, it hides nothing of the thin spots.
Sorry I can't remember who it was, but I had to quit herceptin too. It is what it is and i will just deal with it as I have everything else, to the best of my abilities. Much love to all.0
