Starting Chemotherapy March 2018
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9 weeks PFC,3 weeks on Arimidex and not noticing much in the way of SEs yet. Still shedding every day, but I believe that’s just lingering CT.
Ditto on the supplements...feels like I’m eating a cereal bowl full every day! And that’s just a portion of what is recommended from various sources.
Becky-re: cocktails, I just picked up a bottle of Fit Vine Chardonnay. Supposed to be healthier in some manner? We’ll see how it compares.
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Bec-Ky,
You look fantastic! May I ask what the lysine supplement is? I am on the Biotin and Vit D. I also take a baby aspirin 5x week due to arthritis from a few old breaks and injuries, but also to negate the blood clot risk with Tamoxifen. I think a few cocktails a week also serves as a blood thinner, so that might help:-)
Sidalee,
You are not alone. My cold capping was relatively successful during chemo but a month following I lost much hair, my eyebrows, and eyelashes. I have all sorts of weirdness going on, short, long, dry, frizzy, no bald spots, but there is zero uniformity. It is like bad processing fried. I am 12 weeks PFC and am visiting my hair stylist this week to see what, if anything, she can do.
I am not sure if it was the chemo or the Tamoxifen that put me into menopause, but I did not have hot flashes until after a week on Tamoxifen. I continue to have them but suppose I have just become used to them, although, the night sweats are still unpleasant.
One thing I have noticed, is that my mind and body need estrogen; however, since my cancer does not, I am stuck here. The lack of estrogen is definitely messing with my brain. I am less emotional on all levels, which is a good/bad scenario. I see MO in 2 weeks and see what if anything she has to say.
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hapa~ glad to hear your bmx went okay, how are you feeling this week? I got my other drain out this morning so I am officially drain free! I'm already excited about lying in bed tonight ;-)
persnickety, Yang, glad you girls are feeling better!
becca~ nice to know I'm not the only one with crazy, in-between hair. I just read that we shouldn't dye our hair for 6 months, I don't want to wait that long! I would like to cut it when the new growth catches up a little more, but I want to be blonde again too!
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When I had my 2nd chemo, I complained of tingling and slight neuropathy in my toes... My Onc's PA told me to take Fish oil and L-lysine.
I have just continued to take it because there's other benefits for it such as anti-anxiety.
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I get cold sores on the roof of my mouth during my period. During chemo, I didn't get a single cold sore. After finishing, I had cold sores for a solid month. Lysine is also supposed to help prevent cold sores, for those of you who struggle with them. I was taking a gram, but that is a huge effin' pill. I am now taking 500mg.
I drink a glass or 2 of wine almost every night. I thought I would have to give up ETOH, as I read that more than 3 drinks a week can increase your risk of BC by 20%, and then there's bacon....and I decided fuck it. There are women on this board that did everything right, and still got breast cancer. I don't know why I got cancer. I love my wine. It makes me happy. On a weekend, if I open a bottle at 6pm, I might drink the whole damn thing by midnight. I refuse to feel ashamed.
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Bec-Ky,
Thanks for the info! I need all the anti anxiety help I can get.
persnickey,
I am laughing as I read your post. So true. It is like the old lady who smoked like a chimney and drank like a sailor and passes away at 90 of an infection (true story - great aunt) and then her sister (my grandmother) passed away at 73 from lung cancer and never smoked a day in her life. I worked out, hardly drank, and watched what I ate, and still got it. There is obviously a genetic component in some cases, but most are random luck of the draw, where a stray cell goes awry. Hard to predict. I just hope that some of these hyped treatments in the pipeline get this crap under control so that our children do not have to deal with it hanging over their heads. It is a fearsome thing, so enjoying life is important.
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. . . and there's also my husband's grandmother who was an alcoholic (although vodka only), smoked most of her life, and lived to 97. Persnickety do what makes you happy. The *only* reason I'm cutting back is a calorie thing. I was in pretty good shape diet and exercise-wise about a year ago, then had a fun year of big birthday celebrations (for me!), holidays, and travel and when I'm happy and with my family we drink. I haven't gotten on a scale in about a year but I know I'm up. I'm trying to get back to better eating habits since finishing chemo, including not drinking *every* night, but alcohol will always be some part of my life.
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as I'm reading most of you are taking food supplements was it recommended by your Doctor's?,
Thanks for the response ladies..
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Yang-I take supplements from mostly my own research and what I feel is best for me.
I don't always eat the best..... So it's sometimes a comfort of knowing I'm getting certain vitamins no matter what.
But there's some studies that show women who take vitamin D have less recurrences... That is just an example.
And I live in Wisconsin.... So vitamin D is not available by sun exposure year round. (due to being in the northern hemisphere)
😁
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Hello ladies, I m from August chemo ! Didn’t read all the post but would like to ask question - is Metaqil from Amazon really helps to combat metallic taste during treatments? Or you used some other remedies? Thsnk you very much! I hope you ‘ll doing really well !!! Thsnk you!!
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Beck Thanks I will ask the Doctor as well if he can recommend some vitamins I do walking now 30mins to a hour and stretching and stayed in the sun 6-7 or until 8am.
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My MO recommended the B6 for neuropathy, she told me to take 200 mg 3 x a day, but I only do it twice a day. Not a big pill person. She suggested E for the hot flashes. My sister sells juice plus, and sent me a big box of that, but they didn't want me taking that during chemo/radiation. I added lysine, biotin, D and fish oil based on my own research. My RO told me to take alpha lipoic, and Calcium Glucarate.
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Becca953 - or others starting on hormone therapy - interesting to hear you say the lack of estrogen is noticable. I'm two weeks post-chemo and in two weeks I get the rundown on what they want me to do for hormone therapy. My cancer is 95% estrogen positive so surely they will try to squash it all out. I'm definitely nervous as I do not like my hormones to be messed with! During my two pregnancies the hormone swings really got to me, my personality felt so different as a result. I went into chemo-menopause sometime in June and that has been bearable, hoping tamoxifen-menopause is about the same.
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Hi ladies, so great to hear so many stories of the next steps in our journey, and love the pics! We just got back from our cruise, left exactly 2 weeks post rads. The day we arrived my boost area cracked open, but had packed creams and calendula oil, and
I would apply a slather and then shove tissues in my bra or bikini top and move on. It healed progressively over the course of our trip. I had my hair colored just before the trip. Here's a pic at 16 weeks PFC.
And yes, that is a glass of champagne in front of me!
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Wild- you look amazing! ❤️
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Oh I agree!! Your hair looks great (as does the champagne. . . ;-) )
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Wild-You and your hair are beautiful! There’s HOPE!!! I’m 10 weeks PFC and still shedding! Thank you so much for the post...I needed a pick me up today! 😊
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Wild, you look gorgeous! Glad you had a good time despite the skin troubles.
I had my first expansion fill today and boy is that a unique experience! Luckily, I am numb enough that I barely felt the needle. I was at 125cc and they added 75cc today--it's a significant change and I'm feeling quite full at the moment. It was really an interesting process to watch and feel, lol.
I think I'm going to go see my hair stylist tomorrow and see if she can tame this mess somehow. I just have stuff sticking up all over the place and so far it looks like the new growth may be curly...my hair has always been stick straight.
I hope everyone enjoys the long weekend!
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Ladies - thanks so much for the nice support!!! Our family really needed some time away.
Keep the faith - my hair was really slow to start coming in - I spent so much time staring into a magnifying mirror. But it did get there. Sidalee - hope your expansions keep going smoothly.
Happy Labor Day weekend to everyone!!
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Wow Wild you so pretty with your hair, no one would tell you've been through this journey. Most of you here looks really good on short hair my Goodness..
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Loving all the hair pics...everyone looks happy and fabulous! Here's mine 13 weeks PFC. I dyed it brown (my natural color) because it was sooooo grey!
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Steph you look wonderful. I love the hair pics!! Love your top/dress too!
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Thank you Ingerp! The top is a Target special at $15.99!
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Oh my can't believe you all have beautiful hair my was like a Man's hairstyle lol.. Off to Tomotheraphy today.. I saw a pic of a woman got burn on the neck on her 25th day of RAds..
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Chickadee - My cancer was also 95% estrogen driven, but also HER2. That 95% is a pretty high number, so I will continue to push through with Tamoxifen. If premenopausal, stats indicate it works 40-50% of the time. Apparently, AIs work better, but you have to be a year post menopause, and there are other side effects such as osteoporosis. I did ask MO to test to see if I metabolize Tamoxifen properly, since about 10% of women do not due to a CYP2D6 gene issue. For these women, Tamoxifen has little benefit because the body must convert Tamoxifen to Endoxifen which is what actually selectively works. It takes at least 3 months on Tamoxifen for it to reach ideal levels in blood. The test is somewhat controversial but in my view knowledge is power.
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Wow, everyone who is PFC is looking fantastic! Keep the pics coming, so inspirational!
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Hi All,
It seems that many of you are doing well and looking good.
Are any of you feeling depressed
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Hi everyone.
Yang... Idk why they would have radiation burns on the neck.
So far I'm about a month in on Tamoxifen and am having no side effects. What I am having though, is second thoughts on taking this drug.
Just the risks... And All the reading....
It's driving me Crazy.
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Downdoggie-Yes on the depression question! Not too severe and definitely comes and goes. I’m about 5 weeks on arimidex and not sure if that contributes. But I have to believe that this whole cancer thing is, on its own depressing?
Becky-I too am freaked by the SE...I hate taking my daily dose, but I’m afraid not to! 😝
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I literally spent 2 days reading all the questionable stats on tamoxifen and scared the sh*t out of myself to the point of an anxiety attack. I'm finally calmed down tonight... And feel better. I was almost convinced to go off of it after reading something about it increasing your likelihood of a triple negative breast cancer, rather than a er+, by over 400 %... Anyways random pages after pages I just panicked.I started to feel like maybe we were all brainwashed... Including doctors. I mean... I know it's so far fetched but.... Nothing is anymore.
What started me on this kick was that I watched a documentary on Netflix called "the bleeding edge". It's about medical devices and the questionable ways things get approved and whatnot.... And how much doctors just believe whatever they are told because they are assuming things are really tested and true. Nothing wrong with docs.. but they rely on accurate information Bla Bla Bla... Much of the topic is on the women's permanent contraceptive "ESSURE"
So then I was like.... Hmmm....let me Google tamoxifen.
Bad idea!!!
Then... I went to work yesterday... And one of the first patients I was rooming and getting ready for surgery... (She was having a hysterectomy) I asked her what brought her here to us... Basically what brings her to have to have her surgery. I wanted to hear her story..... She takes a deep breath.... Then just says one word "ESSURE".
My mouth dropped and I was like.... "Oh my God... I just watched the Netflix document... " and she finished my sentence "the bleeding edge" I was like no way!! She said... They told me this was safe and I didn't want Surgical tube tying so it was perfect .... Turns out everything was a lie.
Anyways... It would make sense if you saw it... But otherwise it was just crazy. The whole thing...
She told me her doc kept saying all her pain was in her head and that essure was not to blame and she had anxiety and whatnot and so on...
This went on 2.5 years and finally somoene listened and found out she had horrible scarring and her ESSURE was in her uterus.
She now has constant joint pain and a multitude of other issues.
Anyways.... Sorry to ramble on... 😂
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