Bottle o Tamoxifen
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Mary, I had dinner last month, with a friend, and met her friend from long ago, who had Breast Cancer 10yrs ago, and had Rad for Brain Cancer last year. She's doing really well and enjoying life. She was a dance teacher, and traveled all over the world. She was a little crotchety, but in a funny way. When we were comparing story's she said I didn't have any right to complain, about my BC. I just laughed, after all she's earned it and is about seventy.
Good luck to all of us!
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Another busy day, but Friday I plan to relax. I got my exercise today. the 1st and 2nd graders both had gym today!!!!
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Kari.....gonna have to break your code. I don't know what SFBC and SFC is.....lol
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Genia
SFBC Stupid F--king Breast Cancer
SFC Stupid F Cancer.
I talk with my co worker and offered to help her in anyway I could. She said she had a plan, since she will lose her hair she will get a tattoo on the back of her head in cursive so the students can not read it " Stupid F--king Cancer" Her room this morning was lika a party, we were all wondering what she had in her coffee!!!!!!
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LOL....thanks Mary! THAT it is...........
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I love it. SFBC and SFC. My sentiments exactly... grrrrrrrrr....
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Cancer may take our boobs and take our routines away, but I will never let it take my sense of humor away!!!
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Right on Mary! and thanks for breaking the code for Genia!!
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Mary, you rock.
Well I am all excited because I just met another BC org gal, she came in to NYC from out of state for business, and she saw my post about my colorist wanting to work with some chemo hair, so she made an appointment and my colorist told me and i ran down to the salon with the kid on my back to meet her and see what I could learn.
I learned a lot. First of all she was HILARIOUS. Mary was my first meeting from BC org, but I "knew" Mary from our RADs thread. When this new gal (I am not saying her name or anything because I don't know if she wants to be known) started talking, it was just like reading a really funny frank post here. I can't repeat it, but you know what I mean. I was howling.
On the Chemo hair coloring, we learned some simple basics, like that it took a lot of courage for her to just walk in the door. She's used to being treated often poorly, and she doesn't see herself the way we do, and it's already intimidating for any woman walking into any salon, so add to it walking in without your hair... so it was a nice thing that she knew she was expected, and someone cared about her and her situation. So that's the first important lesson for colorists to know about coloring cancer patients' hair. Its nice to know the place is expecting you and gives a damn about your specific concerns.
Even though I have read it here, that no one with their hair growing in wants to hear how "cute" they look with short hair. I had to stop myself a lot, and probably put my foot in it, because I never saw her with hair, and she did look great with her short hair- although I have never been a fan of short hair. Sorry, I just don't get the short hair styles. She just looked so great altogether that I didn't see her as "a cancer patient". In fact, I looked right past her when i was looking for the "cancer patient", she had to wave and say hello before I caught on that was her. I was wearing my pink ribbon t shirt, maybe overkill... But when I think about how I would feel without my hair, I would definitely rip the head off anyone who said I looked great with short hair, and I'd drink their blood after. But you just don't know when you are looking at someone with short hair that they usually have long hair. It's like talking to someone who lost weight about being fat.
Technically for the colorist, it was easier than he expected, she did not have some of the issues we'd read about. I think her color turned out fabulous and she was very happy
I was stunned to discover that she'd managed to keep her hair loss- and I guess most of the effects of her chemo treatment- a secret from her co-workers. She did say they are all very stupid men, and one of the men she works with very closely actually said to her while she was wearing her wig and putting rogaine on her eyebrows that she was so lucky she didn't lose her hair... amazing crap to deal with, she handled it all so elegantly.
She also said that some of the LGFB seminars had crapola goody bags. That would be disheartening to say the least. She was going to miss a LGFB here, but I think there must be many, on different days at the different cancer centers- we have so many in NYC.
Another thing I noticed, as we moved around the salon for washing, painting, drying etc, we were talking frankly about BC stuff, and as we went I would check with the staff if it was too much for them, and they weren't bothered at all. Afterwards I asked my colorist if he or the staff was shocked by anything but he said "well I mean we dont understand so it was kinda like you were speaking a foriegn language sometimes and we just kinda went on with our work"
That was pretty funny, and true I guess. Like we were talking about her going to Facecrafter for her tattoos, and they had no way of knowing we meant nipple tattoos.. then again, my colorist's salon is in the East Village and most of the people there including my colorist have tattoos, and piercings... you have to do a lot to even begin to stand out around here...
So I took before and after pics for her and I will send ot her and if she cares to show them then you can see...
and on the Tamoxifront... she had some news there too... she's on Tamox and also Effexor. She's loving the Effexor because it has the side effect of... weight loss!!!! She lost a bunch of weight on Effexor.. she said they start you at like 35 mgs, I think that's what she said, and you have to tell them its not working on the hot flashes so they up it to I guess 70 something... and then you lose weight because you lose your appetite... which never ... ever... ever... happens to me. I can think of 20 things I would like to eat right now.
She also mentioned that the rate for getting BC for all women- not cancer patients- was 12%. I was wondering about that... what the usual rate was pre-BC. That's some interesting perspective, although its about a first occurrence and not a distant recurrence. And no, I didn't research that or the Effexor thing, just thought it was interesting food for thought and her experience.
So... what FUN!!!! What a cool chick I met. My colorist was so happy. Just thought I'd share
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Kari - did the colonoscopy years ago - remember that horrid drink - good luck and hopefully with the valium they give you, you won't notice what's happening on that end!
Rachel - your post is hysterical!! I just posted on the hair board as well, and will PM you with my contact info - I am almost hoping that the LGFB makevoer I am getting does NOT include haircolor, so I can spend some time with you and your colorist!! And, yes, I agree - I do not want to be told I look cute with short hair and NO I am not keeping it like this! I too need a new stylist here, and I was treated so rudely by one new salon that looked really nice - I stopped in when I had much less hair / coverage and it was obvious I wasn't ready for any services yet, but wanted to maybe talk to a few stylists and see how the place was. I walked in and it was like I was some sort of alien. I was dressed stylishly, makeup and jewelry, but because I was obviously partially bald, I swear the whole place went silent, and everyone just looked at me. I tried to talk to a few people there, stylists and the receptionist, and the attitude was so frosty and so, "Why are you even bothering us, you stupid woman, you have no hair", that I thought, the h*ll with you, I'm not coming HERE. Now that I have hair and it looks like I am working a super short cut, I'll be the treatment would be a little different. I also get my boss who tends to look at my head and then me, then my head - he's a typical "boys club" kind of man who I suspect doesn't like having women in much power, but I am a manager and so is his other right hand person a woman, and you can see he doesn't like it much. Too bad!!
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Made it thru the sigmoid!! My butt has no signs of SFC!!!!!!!!!!! YAY...the dude said in his opinion my 'issues' should resolve themselves with time and that I do NOT want to have surgery...DUH!! haha anyway, I am so happy. So I had a colonoscopy years ago and they knock you out. For this sigmoid they didn't even have any numbing ointment, I asked for some but they said they didn't have any. I got scared but it went well. It was painful when he was at the top of my sigmoid colon and the air up there from that thing HURT!! All is well now, and I'm feeling good! So happy that stupid test is over!
Rachel - I LOVE that you got to meet a bco sister!! I read your post aloud to my DH and he thought it was cool. SO many people tell me to keep my hair short, and how cute I am...well they don't say that anymore, but a couple months ago when it was shorter! But now I get, 'wow your hair is wild and in that awkward stage'. Chemo affects it, its all wavy and in the back its curly...weird.
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Thank you for the tamox feedback - I'm anxiously waiting, but no symptoms yet (keeping my fingers crossed).
Kfinnegan, so happy your exam went well and results are good. And no drugs or ointment??? I would have cursed, cried and then (probably) rescheduled.
Rachel, the lifetime risk is at 12.7%, but the risk for a woman under the age of 50 (barring a genetic mutation) is at around 1.44%. Under the age of 40 it's less than 1% (.43 %). And excellent point about the pre-breast cancer - apparently it's there for years before it goes "invasive", particularly with low grade tumors. Screening tools have improved, but not by nearly enough. And most doctors (primary care and gynos, in my humble opinion) are breast cancer ignorant. Malpractice is not a great enough sanction for a breast cancer miss. We need more.
Chelev - you handled the sytlist and boss with dignity and poise - bravo! I didn't get chemo, but I knew that if it came to that it would be the biggest battle of my life to get get through it with grace. You guys are warriors.
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YAY YAY YAY Kari's ass is not going to kill her!!!! I don't know if it comes out right on a post but that's how I feel after my colonoscopy... my ass aint gonna kill me my ass aint gonna kill me hahahahahahahaha!!! Wow, no anesthesia? Well that sucks major! You are such a brave girl.
On the hair stuff- I am learning so much and so is Joseph, and I am just stunned there isn't already a guide, a handbook, a set of guidelines for doing chemo-hair. Stunned. I mean for so long they've been doing this, why should every colorist have to re-invent the wheel? And the simple little things that mean so much! Well I said I wasn't going to write about my cancer experience (I am a writer and determined to write the book I was working on before SFBC, nothing to do with cancer) but I told Joseph if he's going to work on these issues I will write it up for him. I will post it on his site, and hope that it becomes common knowledge. There's just no reason to perpetuate the same slights and indignities that chemo patients have had to put up with, especially from people who are trying to be HELPFUL. Chelev, your experience at the salon makes perfect sense to me now, and to Joseph and the folks at the salon now. Man it is so empowering to think we can make a change for the better. OK maybe we can't cure cancer, but if we can take some of the rotten misery out of the treatments and recovery, that's worth the effort!!!!
Makes my freakin heart soar when I hear you say you read aloud something I wrote because it was helpful to you.
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oh and it's my second BCO sister, first was Mary...
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j414- yeah you can tell we are the NYC girls... cursed, cried and rescheduled- yeah you bet!
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oh on second thought, we wouldn't reschedule, with the prep and all that... but we'd make sure they knew that THEY'D be much happier if WE were sedated...
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RRRAAAACCCHHHELLLL!!! My ass ain't gonna kill me!! WOOOOOHOOOOOOOOOOOO (I was lying on the table at one point 'ouch this hurts, ouch this hurts, oh oh oh' LOL!! I can laugh now...You NYC girls are tough chickies too! We ALL ROCK in my opinion!
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Well hell, we all rock, but kari, you are muuuuuuuuuuuuch nicer than I am. Muuuuuuuch. I'd make sure if it hurt me it hurt them too.
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ROLFLMAO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
OMG OMG OMG OMG!!!
You ladies made my weekend. I haven't laughed so hard in months. "my ass ain't gonna kill me"
GOTTA LOVE IT!
enjoy the weekend ladies,
Trish
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Yeah Kari - glad that's over for you and what excellent results - definitive answers thats what we want!!!! Now you can dance that butt off with your hubby. LOL
Thinking of you all at 9/11 time. Lots of stuff on our tellies but hits my heart so much more now knowing all you guys. Rachel, big hugs on all the stuff you do honey.
TMI alert ...Well.... it has been over a year but this morning DH and I got our mojo back
What with all the stuff going on pre SFBC and then all the SFBC crap then the bilat mast things just weren't happening. Felt so lovely to be that close to another human being again.Running out of tamoxifen so need to fill my script and noticed that I am only up to 6 months --what the -- I so thought I was 7 .. did have the 2 week break though. Oh well, 4 years and 6 months to go. Who was the lady who was counting days....
So Saturday here and no more netball so going to bum (sorry Kari) around and go for a iron lung run and do lovely home stuff.
have a great day/nite guys
big hugs
Helena
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Genia: I had the same problem with my med onc. He took me off Femara after being on it since May. I talked him into running the Estradiol test to see how much estrogen my body was making. Results came back that post menopausal woman average a score of 27. Mine was 47 so he immediately took me of Femara and wants me to take Tamox. I emailed him the information I found on the web that had the list which I am taking at least 2 that is on the list. I also told him I would not take the Tamox until he did the test that tells if you are a metabolizer or not. I should get the results from that next week. I have spoke to my gynecologist and found out after 18 years that she left both ovaries after she has been telling me all this time that she took out one. She and another gynocolist agrees I should have the ovaries removed and that they could be removed laproscopically. Scheduled to have it done Oct. 6th. I will go on Tamox if I am a metabolizer since Femara is to bad on the bones. I already have osteo. So right now I am not on anything.
Hope all is doing well. Have a good weekend.
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Chelev, I did chemo. in fact my last treatment was Sept. 19th, 08. So my hair is still short, although to control the fuzz and curls, I have to get it trimmed regularly, it's yucky. Last week I was walking on main st. in my small town, and heard a man say "That lady had cancer" to his friend, I looked over and they were starring at me. Further down the street, I walked past a restaurant, and everyone was looking at me, with their mouths open. Well, I looked away, quickly and walked on. All during chemo., I avoided looking a people, so I wouldn't see their pity, or ignorance. Well, I went home in tears. My Mom said it was my imagination, but I still am not convinced, and feel so insecure. Why can't people just smile.
Sorry for the rant but I feel like shit.
Kari, I'm glad you butt's OK....
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Oh, by the way I checked to make sure, my pants were zipped up.
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I took Tamoxifen for 3 1/2 months. I lost 12 pounds while on it. My appetite was w-a-y down but then I was also told that could have been lingering effect of carboplatin chemo. My doctor told me that about half the women gain and half the women lose while on Tamoxifen. Never had heard of that before. But, I almost immediately started having hives and itching in my palms, thighs, etc but couldn't really pin point what it was that was causing it. I never read that part on the list of side effects but when THIS happened and my lips swelled and airway constricted, I had to go off
of it So then my doctor (oncologist) told me that so long as I am no longer having periods I am okay not taking it. I was pre-menopausal before breast cancer last fall. After chemo in May I started having hot flashes and tested post menopausal so he says I am probably not producing enough estrogen to be a problem, and that estrogen is NOT the bad guy but it is un-opposed estrogen (as in opposed with proper dosing of progesterone) . Has anyone ever heard of this before? It would make sense to me. So anyways, I am happy to not be taking it any more. It causes a nasty green snot like sticky vaginal discharge - you will become good friends with panty liners!
Hot flashes seem to be the most common complaint I hear from friends. My doctor said (as well as Dr. Susan Love's breast care foundation) that black cohosh is okay to take for those and I did and they are! I barely have them now. (Took about 1 - 2 months of taking it) See article Here at he Dr. Susan Love web page on complimentary care and scroll down a bit to read the studies vindicating black cohosh for breast cancer patients. I also take 1000 mg fish oil each day. Good Housekeeping July 2009 had a small article stating that this could help with hot flashes. My mom uses a progesterone cream which she says helps get rid of them too. Most oncologists won't go there, are deathly afraid of law suits if you get a recurrence, so they will not tell you to put any hormones in your body. But our bodies can't function without them. I would be intersted in seeing an endocrinologist about all of theis, finding one who is an expert in women's health and breast cancer would be even better! Oncologists sadly don't know much about hormones or women's health.
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Leggy darlin, time to walk by some construction workers again... remember what happened last time?
The father sounds like a complete psycho, I pity his kid. And btw, did the dad have hair? One day soon he wont and you will. Nyah nyah nyah.
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RRRAAACCCCEEEEELLL
Oh yeah, my shirt buttons were open, then... They both had long shoulder length hair...bastards, I'm going to go look for a construction site.... Thank you
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Boy miss a day on this site and you miss your laugh for the day!!!!!
Kari congrats on the clean ass!!!!!!!!!!
Rachel you are straight to the point no beating around the bush say it like it is!!!! Glad you got to meet another BCO sister.
I came home form work took a nap, and when dh came home I went to get Chinese food, bad lazy mom, we ate out two nights in a row. Tonight I am thinking roasted chicken, then Sunday I can make chicken noodle soup, since FALL is upon us. After I ate dinner I went right to bed. I feel a bit better this morning, but all my joints hurts. It is not the tamoxifen, it is having gym class 2 days in a row and 2 hours each day. But it was fun "playing" and also heartwarming, esp when a regular ed student wants to partner with one of my students. All in all a good day.
Have a great weekend, watch college football today and pro football tomorrow, but not the eagles
unless they fire Michael Vick! sorry.0 -
Yes F***k Michal Vick - he's evil and beyond redemption.
For all Michael Jackson fans (and even if you're not a fan) - this is a great medley of MJ's songs by an ingenious Yale junior - amazing voice, incredible presentation. Enjoy!
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Hi Everyone,
Took this picture of me at the Relay for Life, where I did a Survivor's Lap, with about15 women, all from my small town. One women, just finished her treatment, she did AC and then was to do 8T, but quit, on the 5th treatment, she said she couldn't handle the neuropathy in her feet, but she got it anyway, so did I. Then she was to do Rads. but refused it. My chemo. was 8TAC, and then 5wks of Rads. so I know how tough it was, but didn't say anything. Her hair was just starting to grow out, with a little stubble, then she asked me when I finished chemo. which was Sept. 19th 08, and she was shocked, and said "It takes that long for your hair to grow out", so I explained how my hair came in so different, in color texture, and was quite thin on top now, and I've had haircuts, she looked aghast....So I thought I would show my picture, what the hell....Going back to the relay at 5pm tonight for dinner, and the lighting of the luminary's at 7:30. Oh I also met a lady, who had brain cancer, and she is a nurse. Really nice lady, and she'll be there tonight, so I'll have someone to hang out with. Lunch time, by for now
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Oh and they gave us a shirt and a gift bag, which had some ACS trinkets, and a wine carry bag, with coasters...funny!
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