TRIPLE POSITIVE GROUP
Comments
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MMay, re: multi-vitamin . . . I'm a big fan of Garden of Life. I take the women's one-a-day, though there's also a three-a-day. Other good brands are New Chapter and MegaFood. They're all whole-food vitamins, so you're not mega-dosing yourself with things you might not need. . . with the added bonus that they're more digestible. (I was a vitamin/supplements buyer for a long time in another chapter of my life, but have no stake in one brand or another.)
Anyone have nosebleeds while on TCHP? Woke up this morning to a new surprise . . . Fortunately, it stopped after about five minutes, but MAN. Chemo is the gift that just keeps on giving.
BTW, you ladies are awesome. I love the frank discussions that occur here.
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Kate - I had DAILY nosebleeds while on TCHP, and they've continued 9 1/2 weeks PFC. They're common during chemo, but should resolve once your blood counts improve. I went to a head and neck surgeon yesterday, and she found I have an irritated blood vessel, so she cauterized it.
Her suggestions for nosebleeds: sit with head down, pinching the nostrils until it stops. Clean nose with a saline spray, and moisturize with Aquaphor 2 times a day.
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I too get them. They have so far never been more than frank blood when I wipe or gently blow my nose. I have been using saline a couple times a day and just purchase aquaphor yesterday to try as well. They do let up just in time for next big dose. The mo said if they get worse it or I can't stop the bleed go to ER. I also saw someone on here say that at about day 10 after her chemo she would start having some nose bleeds like clockwork. Youre right there is always something.
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Has anyone tried Hyalogyn for the vaginal dryness? Sloan Kettering is using it in a clinical trial. It is non estrogen, available online and has helped me some after using it for 3+ months. Also a lubricant is almost a necessity for any intimacy. Love, Jean
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Nose bleeds became pretty regular for me. I used a saline to help keep my nose moist. They were the worst at night. Who wants to sit up at 2 in the morning to try and stop your bleeding nose!?!
Re ooph. OS and an ooph have the same effect on your bones and heart. The difference is that if you decide to stop OS down the road, things should get better. I'm interested to see some of the suggestions by Gyns. Mine said ooph and hyst. I decided that removing the uterus was not for me. Seems to have too many uses. I'm now 43. Unless they decide to change their mind on OS for premenopausal women, I'll remove ovaries and tubes. My MO said they don't like to do OS for a long period of time. The problem for me is that I don't know when I'll hit natural menopause. Could be in a couple years, five years or even ten years. Painful sex? I haven't had a problem with that. Sure, things have been dry on occasion. I use astroglide when needed. I adopted the "use it or lose it" mentality. Even during chemo. My MO said my body will provide natural lubrication if I have sex more often. Not sure if that's true but my DH certainly isn't going to complain! I would assume OS and an ooph would have the same effect on my sex life. Please let me know if that's not true. I'm scheduled for surgery September 25th. AIs or Tamox? I've read stuff about women not metabolizing Tamox very well or it not being good for Her2+. Again, not sure if that's true. I haven't have any problems with Anastrozole (knock on wood). Tamoxifen does have a risk of uterine cancer...Although is is low. That is the only reason I considered removing my uterus. If I started having problems with an AI, I would go back to Tamoxifen.
Honestly, all these options suck!
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Momma,
I don't think your vagina has had enough time to atrophy. (Doesn't it sound like mummy? lol)
I also continued with the sex life even after the Ooph. But, as time wears on, the lack of estrogen causes the vagina to lose elasticity and shrink, well, um you get the picture. There's no getting around that. It's just not as accommodating as it used to be....
I slowly lost the ability to naturally lubricate, even when I orgasm. It's TMI I know, but no one told me that it will get drier and drier and less elastic the longer I go without estrogen. Which is why I woulda kept an ovary, just one and did Tamoxifen....but hindsight and all that.
Also, it seems to me that with OS a person might come off it for say 6 months while the um, vagina rebounds, and then start again. In theory anyway, it would take some time for atrophy to begin again. Almost like starting new.
This may seem like much ado about nothing, but honestly it is the longest most unpleasant SE for me personally.
Live and learn.
(And btw, I still have sex. It's just not as rowdy or often as it was even 18 months ago.)
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hercepton causes many things, rash for me at first, I am done chemo, but with each infusion I still get a slight rash on my face, almost a flush, like I was drinking. As for the nose bleeds had those, but of course no one mentioned the nose hair loss either, guess it wasn't important enough. I don't think it has grown back, but the runny nose is pretty much gone for now.
I chose doubl mastectomy to just get the mammary cells out of my body, didn't realize a second occurrence could come back on chest wall, so it's never out of your mind, just moves back a bit occasionally. No regrets on the mastectomy as I was rather large and couldn't lay on my tummy any longer, now I can, hubby was ok with it, whatever I wanted. As for er+ and pr+ I just learned from my surgeon the higher the numbers the better it is, except for her + that number is better lower. So I feel better, about the numbers but hate the whole Dx thing. Still get upset, even mad that this happened to me? Not good spiritually, guess I am a coward but it's something that will take me awhile to deal with, even though I don't get a choice, I have to remember that life is not fair, and this is my new life. Ok off the pity wagon, be well girls
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My MO doesn't want me taking any vitamins, and I'm fine with that. I eat a bowl of Total cereal, which has the RDA of essential vitamins, and I drink skim milk for extra calcium and Vitamin D. I also eat lots of vegetables and fruits, so I believe my nutrition is adequate to provide what I need. I am loath to put more of anything into my body!
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Kate,
I had nosebleeds for the first time in my life on Taxol/ herceptin, they stopped after. About 2 wks PFC... But boy, I hated having that just happen
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TonLee you wish you kept an ovary, I wished I had less than 10 nodes on the left taken. Hey we can't be perfect with every decision. But for all you know you really did do the right thing for you. I mean you are still NED and it's almost 5 years!
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True Lago.
And the reality is, I am still around to well, wow-chica-wow-wow. lol
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Yes you are!
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Has anyone created a list of plant estrogen/paraben free products? I am looking for lotion, facial cleanser, shampoo/conditioner, type products. Also, anyone have a soy free protein bar recommendation? Since I have had diarrhea from day 1, now day 18, I am avoiding all dairy--shakes, smoothies, etc.--and cannot find a soy free protein bar.0
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Quest bars are soy free but they do have whey protein, so not good if you are trying to avoid all dairy. Larabar are soy and dairy free and you can usually find them easily - grocery store, Target, etc., or you can order them.
I would recommend using the Environmental Working Group's website to find cosmetics/lotions/shampoos. You can look by specific item or brand, or look at a category, like mascara, and they will be ranked best to worst. Here is a link:
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"The Surprising Reason Most People Get Cancer"
Part of the reason I don't drive myself crazy with diets, etc. I try to eat healthy but you have to live.
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I agree!! My risk of getting BC in the first place was pretty low yet here I am. I'm young(ER), always been thin, keep active, have an occasional drink, breast fed all three of my kids, and had a pretty good diet. I'll continue to do that stuff with the exception of breastfeeding my kids. They're 9, 9, and 11 now.
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Iago, I agree completely.
I'm young and tried to do everything right, too. If cancer is in the cards, it's just in the cards.
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Hi everyone!
I am so hopelessly out of the loop here but just gonna pop in and say hi & that I agree with Lago & Kate... Dense breasts and my age were my only risk factors.
Still Having all kinds of trouble with anastrozole . Some trouble all along but at 21/2 years out from starting it (in November) it became worse. Hit a wall..
Took a month off in May and felt great. Put me on Femara and it was worse . Now back to anastrozole every other day ..... This is NOT the way it's supposed to be done but he's asked me to do this for 2 more months . At that point I think he'll put me on tamoxifen. I'm just past the 3 year mark on AI.
Saw him today and he said the thinking behind all our treatments to destroy and prevent cancer recurrence is that surgery is 1/3 effective alone . Another 1/3 for chemo .( presumably with immunotherapy). The final third is the hormonal therapy ... AI & tamoxifen .
Best wishes to all...:)
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Lago,
So glad you posted that! First time I was diagnosed I was a non smoking non drinking running vegetarian in my 30's ....the second time I was the same only vegan and 25 yrs older... Also I've stayed away from soy products most of the time...each time I've had some sort of wonky mutation and I sure as hell, wouldn't go to Vegas with my track record. Luck indeed
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Lago thanks for posting! I don't even try to figure out where why or how any more with cancer. I do feel the hormones in our food supply play a role in some cancers and the reason you can't tell a 12 year old froma 20 year old anymore. Worries me about our future generation and what they will face. My daughter at 25 with adenocarcinoma had several twenty something year old young ladies she met with some form of cancer.
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no one knows, or they aren't saying, I thought I lived a pretty good life, no smoking, sometimes wine with dinner, no birth control pills, no hormone anything, but here I am too. It's got to be in our food. If anyone can think back, I did have mastitis in the breast I had cancer in about 4o years ago, I sometimes wonder if that contributed to my cancer? Anyone with that factor? I try to rack my brain trying to figure it out but they probably never will.
Just a mention, I try to purchase all natural products, go to Dr Mercola.com he is a pretty good doc, naturalist and I have been listening to him for years about different theories he has and what's making us I'll. check it out, I have no affiliation but he makes a whole lot of sense.
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Hi everyone,
Just wanted to introduce myself. My name is Melinda. I'm 39 and about to start chemo before any surgeries. Triple positive. Feeling freaked out right now and afraid of losing my hair. But I'm going to try the Cold Caps.
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Thanks for posting that, Lago!
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Welcome starsarestsrs. You found a wonderful group for support.
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Melinda,
Welcome to the club no one wants to be a part of!! This is a wonderful site and helped me through some tough times. This diagnosis is a roller coaster of emotions. Losing my hair was one of the hardest things for me, they make great wigs though and no one could ever tell I was wearing one!! Good luck with your first chemo and lean on these wonderful women for support and advice!
Kathy
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Melinda - so sorry you're here. But I wanted to chime in and say that I had success with cold caps. Check out the board "Cold Cap users, past and present to save hair". There are a lot of good tips on that board. Good luck to you!
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Welcome Melinda, we are here for you. Sula can speak to the cold caps and there is also a thread. I use the cold mitts and booties and am happy to report no nail lifting or neuropathy. My last TCH is the 2nd of September then Herceptin every 3 weeks thru May. The whirlwind of tests, scans, appointments and procedures is disconcerting and overwhelming. Take a deep breath, will be thinking of you. Keep us posted.
As to the how's and why's, I did that the first go round in 2010. My conclusion #1 I'm female #2 I have / had breasticles #3 No kiddos.... None of which I can change. The factors I could have changed the past 5 yrs would be eat healthier, reduce etch. I wish I could have been more active and loose weight but 6 broken bones and 7 surgeries over 2.5 years plus taking Tamoxifen 4 yrs added 30 lbs. I don't play the blame game but accept that bc is what it is. As my MO said the horse is out of the barn and we will deal with things that come up. I was wanting markers and scans but quit chasing ghosts and carried on. Living and striving for ambiguity (thanks to Ann S.;but doctor I hate pink)
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Thanks! I'm checking it out.
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ashla have you tried Exemestane. Physically I am doing much better on it that Anastrozole.
Melinda we were all scared. It's that fear of the unknown. Most of us go into our first chemo scared waiting for something to happen…and nothing does. It's actually a pretty long boring day but exhausting because of the stress. Bring something to do to keep your mind off stuff
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Hi Melinda, and welcome. This is a great resource. It's made me feel much less scared and alone.
As for wondering how and why the cancer started . . . I went there for a few days. I'd had pain in the spot where the tumors were, intermittently, for several years. (Yeah, I know the whole "cancer doesn't cause pain" line. It's a lie.) Thought nothing of it until there was a mass in there. . . . The thing grew so, so quickly--which I know is a GOOD thing, in terms of chemo doing its job.
Other than a few misguided years in my teens and early 20s, I've always done everything right. I eat right (clean--organic most of the time, only clean meat and dairy, etc.), I take vitamins, until diagnosis I exercised like a fiend (now I get out to walk every day, but conserve my physical energy for more important things, like thriving during chemo). I get enough sleep. I may have tied one on a few too many times and eaten too much cheese, but other than that. . . . I honestly think of it this way: if it's in your cards, it's in your cards. There are things we can do to minimize risk, but sometimes genes mutate and, when they do, sometimes we end up where we are. I hate this fatalistic view, since I'm pretty type-A, but it doesn't do much good to sit and wonder whether I did something to cause it.
I will say this: for about six years, I had a slightly elevated lymphocyte count on my CBCs. It worried me; I asked different doctors what it meant, and was told that it wasn't "statistically significant." On my last CBC, the first one after surgery and prior to my first infusion, my lymphocytes were low-normal. Go figure. Coincidence, or not?
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