TRIPLE POSITIVE GROUP

LaughingGull

Just checking in, ladies!

Going through the radiation, plus Herceptin and Perjeta every three weeks . No side effects from either so far and I am back to work and back to working out. And my hair is back, very short, thin st places but back. I didnt use wigs, just hats and scarves so I am very glad that I can go without hats when I want. Will have oophorectomy when done with radiation.

Suburbs I was very happy to read you turned a corner on the infection front! Congrats girl! You must feel so relieved.

Melanie, congrats!

To the newcomer strong lady, for me the chemo was bad but doable and if there is any benefit to your prognosis (my cancer was bigger and spread to the lymph nodes) I would take it. Anything systemic that kills cancer cells everywhere and improves prognosis is a no brainer for me, especially because my side effects of treatment were always less than I expected.

Shela, how do they determine if you really are in menopause? Haven’t had a period since I started chemo and have hot flashes so I may be in the same bost

1stronglady

Thank you everyone for your kind words, info and support. Monday at 2:30 can't come soon enough! But from what I read here I will be in for more tests before I start chemo? 

shelabela

welcome stronglady! Chemo sucked but i worked through it, put on a smile and moved on.

Laughinggull, they did a blood test.

ElaineTherese

1stronglady,

Before you start chemo and/or Herceptin, your oncologist should order a baseline heart scan. Herceptin can affect the heart, and your oncologist will want to know if it is having that side effect. Welcome to the triple positive board!

shelabela

ladies I have gotten my first sunburn. And I was only outside for about 1 hour. Did you ladies notice that you burned easier after chemo

Ingerp

Just re: pre-tx tests, yes baseline heart and bone density scans, but both easy-peasy. And I *have* read that women feel they’re more sensitive to the sun while in chemo (and also sometimes it seems like your skin is just darker or redder even without the sun?)

ElaineTherese

Re: sensitivity to the sun -- I had never heard that this was one of the side-effects to chemo. But, after radiation, my radiation oncologist told me that my radiated skin would be sensitive to the sun. When I go to the pool, I wear one of those swim shirts with the built-in sun protection. I love the convenience.

LaughingGull

My MO stressed this to me...you burn more easily under the sun, as a side effect of chemo. I went to the Caribbean this February in between chemo treatments, and this is the one thing the MO hammered to me, more than any other dangers like insects or water or food or being far away from the hospital.....wear high protection sunscreen at all times, because you can burn, and burn badly.

I rarely burn, and didn't this time either, and I don't think I was any more sensitive than before but yes, this is a known thing.

I am now getting radiation and the RO also told me not to get the area exposed to the sun at all.

coachvicky

I did not burn BUT I did swim outside during chemo and tanned. One day I asked the Nurse Practitioner why did I have faint tan freckles all over me. That was the day I found out my chemo and the sun did not mix. Yes, I still have freckles. August will be one year out.

Vicky

tld2017

Sooo, I am hoping to hear your thoughts on wine! My chemo is done and radiation starts on June 28th. I was thinking I'd enjoy my first glass of wine today after not having any for over three months. However, my sister told me this afternoon that she has stopped drinking because of my breast cancer, because her doctor said that her chances of getting breast cancer increase with drinking and that my chances of recurrence (because I am triple positive) are higher if I choose to drink. So we both sat there at our family's Father's Day dinner at this beautiful restaurant drinking iced tea. My family is German, so before my breast cancer diagnosis, it was typical for my mom, my sister, and I to have a glass of wine while making dinner, and at least one with dinner. So now things have changed obviously. Is one glass of wine a few nights a week really pushing the boundaries? I am on the fence about this. Is it really worth the risk? But, gosh, I really do love a good glass of German wine... Would love to hear your thoughts on it!

timetobebrave70

I feel like in moderation is fine. I have a friend that never had a drink in her life and got breast cancer. You never know. I say enjoy your life. (But moderation is the key) lol

Ingerp

Another individual choice. I’ve had too much fun stuff going on the last few months to not partake

LaughingGull

My understanding is that alcohol increases your chances of getting breast cancer in the first place, and also your chances of recurrence. This seems to have been established as fact. I love beer -although I am from a wine country. I cut it down to one beer per week, at a restaurant or bar -but not at home. It could be one more if there is a major -major- holiday or social event. I also love ice cream and settled on one ice cream cone per week. Both are things I enjoy but I'd rather not do every day or most days. This decision is not just because of risk of cancer, but also other factors like weight gain or interaction with medication. This works well for me and it's more or less the way I grew up, although I started drinking more when I moved to the US and married my husband, so this is more or less a return to normal for me.

Notice that you said one glass of wine while making dinner and at least another one with dinner, that is at least two and maybe more. If done every day or most days, it adds up -I am not judging your habits or cultural background, just repeating what you said. If the lifelong habit is regularly having wine at home and drinking two or more glasses most nights, it may not be easy to cut to just one and be satisfied.

Most people agree than drinking in moderation is fine. moderation means very different things for different people. And another fact about alcohol is: it impairs your judgment.

Just some thoughts

LaughingGull

tld2017

Thank you, LaughingGull, Ingerp, and Timetobebrave! LaughingGull, yes, drinking two glasses of wine at least 4 nights a week was pretty common for me. If there was a big party or event, it might have been 3 on those nights but, for the most part, it was about 8 drinks in total per week. I never really worried about it before because I had read that women could have up to 7 drinks per week and I suppose I figured 8 was pretty close to 7... But, in retrospect, I guess it was a mistake for sure. I come from a long line of amazing women who have drank like that their whole lives and I am the first of all of us to get cancer. But I still can't shake the idea that maybe drinking those 2 glasses several times a week helped my breast cancer come about. I would never go back to drinking like that but I was thinking maybe one glass a few nights a week would be okay (maybe 2 glasses total per week). I have not had any for 3 months and it has not bothered me in the least, even though (because of my huge family), I am around wine constantly. So, I guess as you ladies mentioned, moderation is key and a glass of wine once in a while might not be too terrible. I am grateful for your input!

Ingerp

Actually, except for holidays/big events/this most recent bc journey, I was on a really good roll for several years, but for me it was about weight loss (and it worked!). I only drank when we were out or entertaining at home. I will get back to that, but it's so ingrained in me that when I'm together with family, having fun, there's some wine/champagne involved. It's very much a happy thing for me. My youngest is coming home later this week for the first time in two years--so excited to see him and we will definitely have some drinks every night. After that my schedule clears up for quite a while, although I've also been indulging myself in extra treats/what-not as I go through tx. Seven more weeks of Taxol and then I'll consider getting back to healthier eating/drinking. (No really! I will!!)

ElaineTherese

tld2017,

I have cut back on my drinking but haven't given it up entirely. I have reduced my drinking by 75%. It is a struggle for me because I used wine as a reward for making it through the day with teenagers who have autism. After they went to bed, I would relax with a glass or two (or more on particularly challenging days). I'm down to one, and some days, none.

Personally, I eat better and exercise more, but I think we should leave a little space in our lives for treats. I enjoy my treats more now because they are rare or come in small portions. They truly feel like a luxury.

Homemadesalsa

I am very interested in your thoughts on tld's question as mine is the same. It was easy during AC as wine smelled like vinegar and beer was unappetizing. I started having a glass of wine or a beer as a reward during Taxol, and with friends in town, had a beer and 2 glasses of wine the other night. I certainly felt it the next day (which is SO different than pre-BC), and then am starting to use alcohol as the exception rather than the rule. LaCroix and the soda stream help a lot.

Sugar is the same way, honestly. I used to have 2 cookies after dinner as a matter of course (final course, haha). Now I'll have a mint or a piece of fruit, or if it's an undeniable craving, a piece of dark chocolate. But over the last 6 months I have lost 15#, and I want to keep that off, stay light and get strong.

The balance to all this, of course, is that we have to be gentle with ourselves if we have those 2 cookies, and still drink water, stretch, make our bodies a place of health. Sisters, this shit is hard!

LaughingGull

Hi tld

I hear you! Older ladies in my family drink like champs and live till 97. Not fair! But they are not me. Who knows why I got cancer when nobody else in my extended family did. As you do, I also wonder if the few years that I drank more than my normal pattern, maybe 4 or 5 pints a week contributed to my cancer. We will never know. But now here we are and alcohol is in the list of risk factors. My kids are very young and my dying in the next few years would be a major catastrophe, so out it goes; for me, this is a no-brainer. Also, drinking once a week and on major holidays is perfectly fine with me, really not that much of a sacrifice.

I also lost a few pounds during treatment and I am trying to keep them off for good. Homemadesalsa: two cookies not that bad. I can't have cookies at home, because I would eat all of them every night! I have a sweet tooth and can't possibly resist cookies.

Elaine, I didn't know you have two teenagers with autism. That sounds very, very hard. I sympathize. Drinking at home, drinking to relax, drinking to handle the stressors of daily life (particularly when alone) is a no for me.Too dangerous in my book -not judging you, I just think this could easily lead me down a slippery slope where alcohol could become a problem.

This sh*t sure ain't easy ladies.

Love and peace to all

LaughingGull

Taco1946

The list of correlations with breast cancer is very long - perhaps so long it isn't helpful. For every person who says "I did this and it may have contributed to my BC" is someone who says "I never did this and still have BC." Be gentle on yourselves and remember that it isn't real helpful to be miserable in recovery. I have been a recovering alcoholic for 35 years. Some days that still is a struggle. I have made a conscious decision that I am not willing to give up sugar too.

Every person on this board has two risk factors which are uncontrollable. We are women and we are older than we were at diagnosis.

LaughingGull

Alcohol is a established risk factor, just as being a woman, being older or having dense breasts. Not even in the same category as unhealthy food loaded with sugar -that is not a established risk factor.

hapa

I've been struggling with whether I should relax more or keep with the ultra-healthy diet I was on when I was diagnosed. At dx, I was eating no meat, dairy, processed food, deep fried foods, or alcohol. I had the healthiest diet of anyone I know. I was also trail running about 20-25 miles/week. I had gone vegetarian at the age of 16 (vegan came later) and had never been overweight. I feel like I was doing all the right things and got cancer anyway, so why was I bothering? So unlike most people who go on a stricter diet after diagnosis, I've relaxed it a lot and now I eat occasional processed food and fried foods. Still not a fan of meat and dairy, though I will eat fish now when I feel like my energy is really flagging and greek yogurt when I feel like the chemo is wrecking my digestion. I'll have the occasional ice cream too, and I ate a waffle with syrup this weekend which I never would have done before. I'm not sure what I'll do when chemo is over, though I think for me alcohol is a no-go. I get asian blush and that supposedly means drinking gives me 10x the cancer risk of a non-drinker. Plus, I don't really enjoy it.

I kind of wonder if I was exposed to something many years ago that developed into this cancer, but I don't know if that's how breast cancer works. My dad came down with two kinds of cancer in the years before his death. He died of bile duct cancer a year before my dx and also had colon cancer for a couple years before that. All four of my grandparents lived to 85 or older, none of them died of cancer. I try not to think about this too much because I know there will never be an answer, but I just can't help but wonder what caused my cancer. Maybe it was all those years of birth control. Maybe it was those years at the stressful job when I drank two glasses of wine to get to sleep most nights. Who knows.

I try to think about how I'll feel if the cancer progresses or comes back. Will I regret depriving myself in the interim if I pick that route? Or will I regret eating ice cream and tacos if I pick that route? I already know how the first regret feels, but what about the second one?

1stronglady

Have a 2:30 appointment with my oncologist today. Will find out my next step in this journey. 

SpecialK

hapa - I don't think there is a regret-free approach, you just have to choose a way that causes the smallest amount - and sometimes that is a moving target. It does get easier as time passes to figure out how much leeway to allow yourself. I have found that to maintain current weight, or lose, while on anti-hormonals I need to be fairly strict and stick to the only way of eating that works for me, which is an anti-inflammatory elimination - no dairy, sugar, gluten, peanuts, soy, eggs, corn. I feel best when I eat this way as I am food sensitive and most of that list causes trouble for me. I pretty much gave up alcohol many years prior to diagnosis due to a surgery to rebuild my gastro-esophageal junction with part of my stomach. As a result of this surgery I don't tolerate alcohol well, and most types - particularly hard alcohol - cause pain. I can handle one glass of wine or champagne, or one beer and must be combined with food - and only indulge a few times a year. I am sorry about your dad, my brother and only sibling died of bile duct cancer in 2008 at the age of 55 - stage IV de novo, very short illness and then he was gone.

ElaineTherese

LaughingGull -- yes, teenagers with autism are stressful. Every week, DH and I compare the scratches and bruises we've endured!

1stronglady -- how did your appointment go?

LaughingGull

Hi hapa

That's funny, I went through that phase too, while on chemo. I also did everything right (except having kids later in life), very healthy diet, healthy weight, lots of exercise, no family history anywhere, and still got cancer. So when on chemo, at times I was in "what even matters anymore" mood when in the presence of cookies and chocolate or ice cream -and acting accordingly!

Now that chemo and surgery are in my past I am getting my sh*t together and trying to double down on the healthy habits. Because I still love my tomatoes and still love working out and feeling strong. And if there is any solid evidence that something lowers risk of recurrence, I am willing to take it. Within reason. Hence the weekly (and major holidays) alcohol and weekly ice cream cones.

Elaine, that sounds really, really hard. Hope you have a good support network. I don't even know what to say, other than you totally deserve a special risk-free (free of all risks, cancer related and not) daily glass of red wine allowance!

Taco, I wont give up sugar either, I eat little of it but since it is not in the list of established risks....no need to cut completely.

1stronglady, let us know how it goes, we are all ears.

deni1661

My thoughts on the drinking - prior to diagnosis I drank almost every day...a glass of wine at night, a few beers or cocktails on the weekend. I didn’t drink at all during treatment but have relaxed a little since then. I have a few drinks per month and sometimes even less. I personally think it was the stress that caused my cancer although I ate poorly, drank too much, didn’t sleep enough, overweight, etc so who really knows. My MO and BS said alcohol is associated with BC but does not cause it - there isn’t enough hard data to scientifically prove what exactly causes cancer (according to my MO/BS). Being overweight, sugar, and stress is also associated with BC. My MO advised alcohol in moderation and maintain a healthy weight - treats once in a while which is what I’m striving for. He felt stress was a big no-no for triple positives. I need to abstain from alcohol and sugar or the weight comes on quickly.

I think we’re all deserving of a treat every now and then, whatever that means for each of us!

tld2017

Thanks so much to everyone who responded to my post about having wine once in a while! It really is wonderful to get so much feedback!

TriplePos2017

Hi All! I am coming to the end of my Herceptin and my MO is talking about a new drug called Nerlynx for 1 year after Herceptin. Have any of you taken it? How bad is it? I have read mixed reviews about it online and since I had stage 1 bc with a low reoccurrence rate (per my MO) I am not sure if the side effects of it out weight the benefit I would receive if any. Thoughts? TIA

hapa

Trip - I'm still in neoadjuvant chemo but I read up on Nerlynx and I'm not entirely convinced it does anything. I mean, the numbers from the studies just aren't convincing and they had to cut the study participants into ever smaller groups to find one that got benefit from the drug, and IIRC only node positive, hormone positive women benefited from the drug. As an engineer who has worked extensively with statistical analysis, I've learned that if you cut data in enough ways, you can get it to say whatever you want and I wonder if that's what happened here. That being said, I don't think it will hurt, and it might help, so if my MO recommends it I'll probably try it but if I have serious troubles with it then I'll stop.

I had my second echocardiogram today and my LVEF was 1% higher than the first (pre-chemo) echo. 70% at the first and 71% this time. Which is amazing because I'm not working out to the same intensity that I was before chemo, so I was prepared for at least a little bit of a drop. Anyway, that is one less thing to worry about.

I also got a tentative date of Aug 22 for my surgery, which also happens to be my husband's 34th birthday. I asked if they could move it, but only if they would move it up and not back, but then I talked to him about it and he doesn't really care. Still, I'd liked to have the surgery moved up because Aug 22 is six weeks to the day from my last chemo and the window is typically 3-6 weeks. I'd rather get it done sooner than later.

TCHP #5 of 6 is tomorrow. I'm so close to being done. So close!!!

shelabela

i have had long discussions with my MO about having 1 or maybe 2 beers. She said regardless of the info that is there she can't find anything that she feels is concrete enough to tell someone "NO DRINKING" she said as long as you don't turn into a raging alcoholic she sees no problem.