Bottle o Tamoxifen
Comments
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You'll know soon enough, Allie, I have weekends off, we'll talk.
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Good Morning to you, good morning to you.
Thank-you Helena, if my getting SFBC has helped someone then my job is done. You rock too!!!!!
Carollyn, at first I saw my BS 2wks, 6wks, 3mths and now I have another appt for just after my first post cancer mammo. Rads onc 2wks, 1mth, 3 mth and now just after my mammo. Med, every 3 mth to check blood levels.
When you Northern Cali girls, get a date, maybe I could coordinate it with a visit to my sister at Travis AFB?????????
Have a good day.
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Aw Mary, sucketh much to get an infection
Like ya hadn't seen enough doctors already...Hugs!
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Ok, we need to find a date that works for a get together! And Mary anytime you are here, just let us know also!!!!!!!! Travis is pretty darn close! I'm off on weekends too and can be pretty flexible.
Leggy, funny comment about it must be in your head and not on top of it! liked that!
Carollynn, I only saw my bs once last year at the 3 mos mark and he said he was cutting me loose and my onc could coordinate whatever I needed. Then my rad onc never needed to see me for followup. I thought that was weird since another bc sister from Kaiser (same as me) saw a different rad onc in the same bldg and she had followup, but then she had a lumpectomy and I had mast. I am on a 3 mos onc schedule now. Saw her more often while on the clinical trial.
Helena, I commented about your squeaky toy photo on the motivation thread! That's just brilliant! LOVE IT! I want to come to Australia one day too! They filmed MTV's the Real World there a couple of seasons ago. Looked wonderful.
Mary, that sucks about the infection and DS's pulled muscle, but glad you are on top of things girl!
Weird, but before when I got my periods, I would have very moody PMS! Since chemo zapped my period...I have had no moodiness! In fact, I am always smiley and happy. WTF?????? not complaining though.......!!!!!!!! Just the stiff neck and low back pain and sometimes odd leg pains since Tamox. Even had a massage last night and when she had my head to one side, it hurt! and the massage did no good for the stiffness! weird little pill causing such troubles...and I get pretty mild hot flashes compared to others. Lucky so far.
Ok, back to work!
Hugs and much much love!
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Now that I am finished with treatments, I did one follow up with my bs, one with my new med onc (and another one next month because we're just getting started together) and two with my rad onc (usually it's one, but because I had some lingering tenderness and soreness, he wanted to track that). I won't see my bs until January for a 6 month followup, and the rad onc in December for my first (gulp) post-treatment mammogram. Don't know yet how often I'll see my med onc - I would imagine it will be every 3-6 months, unless I have a problem.
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Rachel....I think you're right about the mamo information. I just want to make sure it doesn't happen to anyone else if it was missed. I'm not the suing type so that's not what I was implying. But, I would like to know if it was missed.
Have a great day everyone.
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My onc visit is still every 3 mos, and same with breast surgeon. I am over 2 years out..
Thanks Leggy on the compliment...I feel young..and am very much looking forward to 50!!
Rose, my oldest daugther visited the Almafi coast..her pics were unreal!!! That is where I want to go! Tony is only 1/2 Italian..but he is learning the language and wants to teach me!
Helena...I was wondering why your beautiful face was no longer your avatar...now I know! Your squeek toy...LOL! I have always, always wanted to visit your beautiful Australia!!! It is high on my to-do list!
Kari...I can relate to your lack of moodiness with periods after chemo. I had a few periods after chemo, and I didn't feel the severe mood swings of earlier years! Nice!! Now no periods..and I am always happy! Well...most of the time! lol
back to work!
xoxo
Lisa
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Lisa, no periods since chemo and no moodiness!! YAY!!!!!!!! We're a couple of the lucky ones.
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Leggy - can't be a pole dancer, stripper or belly dancer as you would have to work weekends ...mmm... thinking thinking .... secrets drive me crazy ..
Meg - must have missed that you were BRCA2+ and getting an ooph
. Have your CA125's ever showed raised levels? As you are tolerating tamoxifen so well are you staying on it after the ooph instead of going on an AI. That was going to be my plan if I went down that track. Hope it all goes smoothly for you and you don't suffer any side fx. Hugs.Kari & Lisa - you always being happy translates into these boards as well you guys.
Did the whole Europe thing when I was 27 but missed Italy as my backpackers budget couldn't extend that far (too much partying - whoops), regret it to this day. Funny thinking back I had no mobile, no credit card, no facebook, no digital camera - things have changed so much!
Everybody else - a big gidday from down here - its another glorious day here - bummer really as we haven't had any decent rain for over a month now and everything is looking very dry - had to buy water for the first time in 7 years yesterday - ouch!
Have a great day/nite
big hugs
Helena
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I will see my BS 1xyear, I have a survivorship appt with my Onc. NP 10/2 (something new Penn is doing you have this when active treatments are over), Onc. in November then every 4-6 months. I used to go to my Primary NP for Gyno but will now go to regular Gyno (he is so booked I have to get a call in November to schedule appt. for Jan. or Feb, something about his appointment book not being available yet. I am switching, in January, to a primary in the Penn system, so I will have all Penn affiliated Dr.'s.
Helena - My 19 year old daughter has about 5 or 6 pair of UGG boots/clogs. Her wardrobe is worth lots (she has very expensive taste). That was why I was curious if the cost was less in Australia. I always try to find a deal.
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Excellent on the levels Meg - looks good for clear results on the ovaries. Yeah, AI's worry me with the joint pain etc. especially with us tolerating tam so well (love the splitting) also with your osteoporosis. Although not an ideal situation the thought of getting rid of them will be a relief going forward I am sure. I have variances on my BRCA1&2 genes which they really don't know anything about just yet so as soon as I am in menopause they are coming out. AND more importantly we don't want to lose you from this thread !!!!!
big hugs
Helena
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Come one, come allllllll! Helena you'll just have to come out and visit. How are we going to organize this visit to the Napa Valley girls?
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RE: Napa Valley Get together - we need to set a date. I propose sometime after mid October, because that is when I am going to Death Valley. How about November 7th or 8th?
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Hello ladies.
Kari and Lisa, I too have noticed that since I have had my ovaries removed, I have been in very upbeat mood.
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Sounds good to me, thanks for the help Lisa-e!!!
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Lisa-e, I am heading to Albuquerque Oct 8 and then Vegas Oct 10 to see my sons, My yougest and I are talking about going to Death Valley. Thanks for all your input, I guess my new date book will really come in handy, will have to make sure I plan around all my Doctor visits, bad news they are all 80 miles away, good news I am able to schedule lots of them around and thru work hours which is 50 miles away in the same general direction! Work has been great and all seem to be happy that I am back even if it is less hours and in and out.
Mary hope you are feeling better.
Guess I can't tell if the joint pain is worse with the tamox, have had it for so long I am used to it! I do see since returning to work my legs swell some at night but by morning they are down, will ask the Gyno about it Monday.
Hope all have a great evening and tomorrow. Napa get togeher sounds great hope all you CA girls can get together.
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carollynn, have you been to Death Valley? It is a beautful place. I don't know how much you like to hike, but send me a p.m. if you want someinformation about my favorite hikes in the park
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Well the Military finally got on board with my sister. She goes Sat. for her BRCA test!!!! Her genetic counselor was surprised she was so well informed. Then my sister asked my why I did not get a doudle mast. I told her it was too close to going back to school and I really wanted my ovaries removed first, since I have already had cysts. She said well you already had bc. However, just a stupid ?, how do they do cancer checks after mast????? Since they can not get all the tissue, would you automatically have to have yearly petscans, mri's or what? I would still be afraid of SFBC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Rachel, here is something for you to search(in ypur free time~~~LOL). The genetists doing my sister's test is using salvia, she said that it is better than the blood test????? If you do not mind, I have a hard time navigating around the internet. Thanx!!!
Have a good day!!!!!!!
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yes ma'am... I haven't gotten very far but here's what I got so far:
Sloan Kettering: http://www.mskcc.org/mskcc/html/8623.cfm
6. How is testing for BRCA1 and BRCA2 mutations conducted?By analyzing a blood or saliva sample, a lab can detect DNA changes that indicate a mutation in one of these two genes. If more than one family member is interested in being tested, it is best to start BRCAtesting with a person who has (or had) cancer of the breast or ovary. Once a DNA change has been found, that same mutation can be tested for in other family members. Testing for BRCA mutations on stored samples of DNA from deceased relatives is also possible.
Journal of Molecular Diagnostics: http://jmd.amjpathol.org/cgi/content/abstract/11/3/176
A Rapid and Reliable Test for BRCA1 and BRCA2 Founder Mutation Analysis in Paraffin Tissue Using PyrosequencingLiying Zhang*, Tomas Kirchhoff
, Cindy J. Yee and Kenneth OffitFrom the Department of Pathology, * and the Clinical Genetics Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New YorkThe founder mutations in BRCA (BRCA1*185delAG, BRCA1*5382insC, and BRCA2*6174delT) account for 95% of the detectable BRCA mutations in breast and ovarian cancer families of Ashkenazi Jewish ancestry. Optimal clinical management of individuals from these high-risk families relies on the identification of BRCA founder mutations in the laboratory. We have therefore developed a rapid and reliable approach using pyrosequencing, which allows for the detection of these frequent frameshift mutations on different types of specimens. We were able to correctly identify all mutants in a blinded analysis of 177 DNA samples, including 120 DNA samples extracted from paraffin tissues, 30 samples derived from blood specimens, and 27 samples derived from saliva. The mutation detection rate of pyrosequencing was 100% for all of the DNAsamples tested with neither false-positive nor false-negative results. The assay also demonstrated both high accuracy and high precision for the detection of these common mutations in paraffin tissues. Furthermore, saliva collection is a noninvasive alternative for DNA isolation in both clinical and research settings. We show that pyrosequencing is a rapid and reliable method that serves as an excellent platform for BRCA founder mutation analysis, especially when only paraffin-embedded tissues are available.
American Cancer Society:
Looking at families: The Two Sister StudyIn August 2008, NIEHS researchers launched the Two Sister Study, which builds on the work of the Sister Study. The Two Sister Study will focus on women who develop breast cancer at a young age. Enrollment is through invitation only: breast cancer survivors whose cancer-free sisters are already enrolled in the Sister Study may be eligible to join if they were diagnosed less than 4 years ago and were under age 50 at the time.The goal is to enroll up to 2,000 survivors. The volunteers will need to provide detailed health information and updates, as well as spit (saliva) samples for DNA analysis. NIEHS researchers will then compare the sisters with and without breast cancer, and look for possible genetic and environmental links. The sisters' parents are also being invited to take part. The research is being funded by the Susan G. Komen for the Cure and the National Institute of Environmental Health Sciences. It is being directed by Weinberg, Sandler, and Lisa DeRoo, PhD, also of NIEHS.
Nothing yet about saliva being superior to blood test, but at least it seems to be as valid, and nicer than a blood draw.
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what's up with this... BRCA supposedly mostly in Ashkenazi Jews like me, and I do have a non-blood aunt and cousin with BRCA, but other than them, everyone I met here with it are far far far from Jewish... meg.... mary...
Well I am just so excited. I have been stressing out like crazy about this nursery school application process. If you haven't heard what its like trying to get your kid into a freaking nursery school in NYC, lemme tell ya, its NUTS. Well the really nice schools anyway. Yes, we are talking 2 year olds. Like... you have to apply a year in advance. Sometimes there are lotteries just to get an application. There's interviews to pass. Mucho $$$$$ tuition. There's 200 kids trying to get into 30 places (in my case, there's 20 kids in the class for 2 year olds). I'm competing with the rich and famous. And the pressure is madness, believe it or dont but most parents are concerned if they dont get into the "right" nursery school, they wont get into the "right" elementary school, or middle school or high school and therefore college. I am not shitting you, this is serious business. One mommy friend told us about Annie Liebowitz being a parent at her kid's school, how she took all the pictures for the school calendar. Augh. There is no public school alternative, not until kindergarten. I wasn't even going to bother, but then I read about this school and its so damn cool. OK if we dont get in, we'll be fine, there's lots to do in the city for a little kid. But... I just was so nervous!!!! And it went GREAT and I love the school and I had a chat with some of the people after, I was the last to leave- although I didn't want to be too much of a groupie.
But I have been out all evening, unusual for me... so I am behind on here
Oh so happy it went well. Next... I have to finish the application, with questions like "When does your child feel most successful?" HE'S 19 MONTHS OLD! SUCCESSFUL? WHAT? OK OK... then there's the tour, then the interview, then the playgroup, then I wait until March to see if we got in! AUGH!!!!
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Rachel, when they ask "When does he feel most successful?" do not, repeat DO NOT say "When he fills his diaper".
Even if it's true.
Leah
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Leah- that was 100% my first thought.
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Hey Leah- La Shanah Tova!
Also, nice to hear from you, its been a while. Are you still in Israel or did you get back here?
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ShanaTova Rachel. I'm still in Israel - I've been living here for 27 years.
Leah
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Rachel - they did the Ashkenzi gene test for me as my fathers family history is sketchy to say the least and my sisters (I have 3) all believe there is a jewish connection. Long story but anyway that was the first results I had back and it was a negative.
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Leah, I had you mixed up with another poster who was trying to come back to the US because of a healh insurance issue and a visa issue.
Nice new quote Helena, unless thats been there all along and I missed that too...
There's another test other than the BRAC stuff for Ashkenazi Jews? Oy.
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Thank-you Rachel, what a busy lady you are. Good Luck with getting your son in the right school. My 4 yr old goes to the same daycare, preK class that many of the teachers at my school use, so I feel good about that. Since my 8 yr old went I had no problem getting my 4 yr old in and she is getting the speech therapy that she needs.
Rachel, the genetists that did my BRCA test said that my mom's maiden name SHEWEE sounded eastern europeanor something. I told her that my mom's mom had always said it was french, not sure. I am not really sure of my mom's complete background since her mom had little to do with us after my mom's death. My grand father died 5 mths after my mom. I can not even begin to imagine how devastating it would be to lose your daughter and the your husband. I hold no ill will, only wish to know more family history. SHe died just over a yr ago and Christmas cards to her daughter came back and her last known phone number was no longer inservice.
Enough of my history.
Rachel Thanx.
BTW I got "busy" tonight!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YEAH!!!!!!!!!!!!!!!!!!!!!!0 -
I can not sleep tonight, so much on my mind. I will wait to see what my sister's BRCA test results are and then if she opts for surgery, I will find a way to get out to Cali.
Just a thought any studies about propholactic chemo for bc and oc? My husband's friend has prostate cancer dx the same time as my bc, he initially did not need chemo, but then entered a trial in which chemo was given. He did not go into much detail. I will have to grill him or his wife more next time I see them.
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Mary - singing the song "She's a Brick House yow" for you getting BUSY last night girlfriend!! WOO HOO!! Hope your sister's results come back negative! And glad you have felt more upbeat after your ooph too! Also, I always wondered about them checking after a mastectomy too. My onc really presses all around my scar and armpits, she's very thorough. She said she will perform my breast exam each year when I told her that my Gyn said to get a breast exam each year. She said they don't do scans because so many people will have false positive readings. They just go by symptoms, which scares me!!
Leggy & Lisa-e Nov. 7th or 8th works for me!!!! Allie???
Rachel, I just can't imagine having to go through all of that school stuff when your son is so young. Its just craziness!! Hope he gets in! And I laughed at your groupie comment. I didn't notice Helena's quote either til you mentioned it...ok banging my head on keyboard!!
Hi Helena!! We couldn't even imagine a day without a cell, credit card, Facebook or BCO!!!!!!! now could we???!!
I'm going to an event tonight put on by ACS and Komen "The Many Faces of Breast Cancer" where a panel of 4 oncologists will talk about survivorship, etc. I will report tomorrow what I learn! Have family coming into town but I didn't want to miss this 1st annual event, since I'm in the 'c' club now! I never wanted to be apart of this stupid 'c' club!!!
Shout outs to all! love ya girls
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Kari - I go to Univ of PA Hospital - they have a top rated breast center and they don't do scans for the same reason.
Rachel - your pre-school saga reminds me of the movie "Baby Boom". A movie I always like to watch when it comes on. Even my DH likes to watch it.
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