Bottle o Tamoxifen
Comments
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Oh and I saw YOTH on another thread dated Aug 5. Sounds like she's just fine on Tamox and moved on.
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Rachel - Good luck with your diet, it sounds great!
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Hey ladies- I am having my exchange surgery on the 17th and I went to my family doctor for my surgery clearance. He told me not to take Tamox. for a couple days prior to surgery and for a couple days after. Did any of you stop taking it prior to surgery? I just read here that it stays in your system for weeks on end. Something about the blood clot risk and inactivity after surgery. Like I don't have enough to obsess about! I now have a fan on my desk at work and I panic if my scrunci isn't there to put up my hair as soon as the burners go on. I don't care if my arms are flabby and white I wear tank tops most of the time now - FL is hot as hell and that isn't helping my situation any. I hope the next 5 years fly by cause I ain't liking these hot flashes much at all.
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Kookiesmom,
I have heard things both ways on this. Some surgeons say to stop 3 weeks prior and up to 3 weeks after. My surgeon said to just keep taking it, and I'm having a big flap surgery!!!
I need to ask the ONC. This is also making me a bit nutso!!Beverly
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Morning,
Diane - I don't get hot flashes either
... had the neck pain too which subsided ...hope the other pains subside too .. hard to tell if it would be tamox, chemo related or just running around after 3 children ..or all three!! Hugs.Mary - soooo happy for you. Honestly all these tests can really f#*k with your brain. s'cuse the french but great you have the all clear. What did you manage for dinner!
Rose I hope so much you don't get the same SE's now you have started again. I have all my fingers crossed for you this time.
Kookiesmom - goodluck with your exchange on the 17th, mine was 7 weeks ago and I asked both my Onc and plastic surgeon about going off tamoxifen. I had a 2 week break a few weeks prior but they both agreed that me starting on tamoxifen again prior to surgery wasn't a problem. The surgery was only 1.5 hours and I wore the compression stockings for a week after when I was just sitting around or in bed but I really tried to be active. I have heard some women stop taking it, especially for big ops.
Rachel - all the best for the new diet and you must be counting down the days now for your Premier seat on the Tamoxifen Train!!! I can't see what your new photo is - it looks like you are carrying a surfboard - Cowabunga!
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kookiesmom....my girlfriend had the S GAP surgery (11) hours long and was only off Tamox for one week.
Rose Thanks for the reply to the neck and hip issues.....I feel like things seem to be settling down some. I am trying to get my butt back into the gym. I used to be a workout nut and played on several soccer teams but that seems so long ago I feel like a kid starting kindergarten. Maybe I need a trainer LOL. I think I need to get on that motivation thread soon. I am paying for a gym membership and all I do is drive by it
Hope everyone else is having a great week! Great "seeing" so many of you on FB.
hugs
Diane
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GOOD NEWS, MARY! YYYYYAAAAAAAHHHHHHHHOOOOOOO!!!!!!!!!
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Renee-I also found your description of an evening with tamox to be a scream! Thanks for the laugh! I had written here last week that I would start the tamox the next day, and then I conveniently "forgot"-- really! Then I decided that I would take another week off from hormonal therapy since I have to have a Brain MRI on Friday, so now the plan is to start the little lovely on Saturday. I guess those memories of a year+ of fun on Arimidex have caused me to drag my feet....
I'm glad someone explained PFC. Now I can just mutter PFC under my breath when I'm at work and trying to remember how to put a word behind another word and complete a sentence.
As for support groups, I have been trying to give and receive support here at BCO, which has been a help. I did express interest in a local breast ca support group, but I was told that they only wanted early stage breast ca survivors who were "just starting out on the journey" and not someone like me who has quite the history and now advanced disease. I guess I would be seen as a downer. This disease can prove to be a very isolating experience.
I think I'll keep checking back with you all!
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Ah, Queen Helena of the desert digiridoos... this is the picture in my avatar :
Pity my kid's head is turned the other way... so here's one you can see his face...
ha ha ha ha ha!!!!
Brenda, I am nearly out of my mind over this crap about the support group!!!!! I mean, I can understand - as you do- that there are different goals of different support groups maybe, but even that is a stretch and if its so, then where is the support group appropriate for you? Uck ptui, I avoid any BC stuff that calls this a "journey" fuck that. Sorry for profanity, you are much to much a lady for that but I'm not. No, really, I can't even buy into that reasoning. I would not want to be in a support group that excluded Stage IV patients, that's insane. I learn from these patients, I get support from all Stages, for instance... talk about motivation to take Tamoxifen!!! One gal on KAK's thread is Stage IV and took Tamoxifen and became NED. That's totally supporting me against my Tamoxifears.
On one hand they are constantly reminding us that any day any one of us could be Stage IV, else we'd have walked away after surgery- but they aren't fooling anyone any more by hiding patients who are!!! The SHOCK we all felt when we got the DX, and the following shocks because Breast Cancer "Awareness" stops at telling women to get mammograms- the rest of the real information is kept secret until they plop it on you like so much manure after the DX!
Leaving all of us to explain it to unwilling friends and family who think that all the celebrities they read about have "beaten" cancer, the whole "Isn't it over yet" thing that drives us all batty. If they have a "newbie" section for newly diagnosed, OK, fine but the rest of us are not new to this, the scales are gone from our eyes. Do they think we wear blinders and gags to RADS and Chemo? My cousin who was DX in 1964 at the age of 17 with Hodgkin's died on Tuesday. My high school pal who became a powerful lawyer has Stage IVa tonsil cancer, we had lunch Monday and made plans to lunch again in September. Its a relief to be able to talk to him about cancer, he knows so much and I know I wont frighten HIM with the truth I am facing. Another high school pal's son has bone cancer. What do these cancer organizations think, we all live in a vacuum? We live in IGNORANCE that is contrived and perpetuated by these people who exclude advanced cancer patients.
And this is all just besides the cruelty of how they spoke to you. Unbelievable. And yet, from the other continuous cruelties we see perpetuated on all cancer patients (like what's been happening to Leggy and Mary waiting for test results) I guess I can't say its unbelievable. Shocking. So I am going to say to you the same as I say to myself in these circumstances, the same as I said to Leggy and Mary - keep looking. Ask the social worker. Ask the American Cancer Society. Ask your health insurance provider (my blue cross people offered a 24 hour hotline for help with my cancer questions, I never called but it's there), ask Susan Komen and the other Breast Cancer groups. Damn it you deserve a support group and i am SURE there is one for you. PM me your location and I will make some calls for you. You shouldn't have to make these calls and risk being spoken to like that again. I'll do it. Seriously.
Oh and one more thing, we are assuming that they want to spare the other patients from you, it could be the other way 'round. Like right now I don't if what I just said made you feel bad. Maybe they also worry that the less advanced patients would bring YOU down. Still, that's your choice and the way to handle it would be part of the intake counseling. It's still idiocy and madness on their part, more crap you don't need.
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Brenda- I just saw someone on another thread talking about Gilda's Club and how they don't have stages.
Also check out the 1st Ta Ta Sisterhood Reunion in Vegas
thread. Again, I don;t know where you are but a bunch of gals from here are going and I know at least one is Stage IV. I am really going nuts here over this... tell me where you are and I will find you some groups. That is just utter madness.
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Well, alot of posts. Dinner was Hawaiian Pork Chops(salt,pepper, garlic, pineapple and Catalina salad dressing), w/angel hair pasta and greenbeans. Nice and healthy. Of course I had choc pb icecream for dessert.
Ok I think I missed something here, what is PFC?
Rachel, I do not knew why they made me wait, but that is why I had the results sent to the surgeon doing my ooph. Now all that info is in my file w/ my regular dr.
My sister and Aunt are coming from Cali. They are coming to see me, but only breifly. My nephew is startin MSU and since they will be in Lansing, they decided why not another day. I was planning to drive to Michigan when they were there to surprise them! I guess we just think alike. I hope my aunt can travel ok. She has diabetes and has bad legs, she will have to get out and walk every few hours. I am sooooooo excited!!!! they will probably be here around the 26 or 27 of this month! How coooooool.
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Mary- funny, my dinner in the bag from Nu Kitchen was pork and pineapple (yours sounds much better). Funny we had the same thing- and I guess I wont be getting any pork from the Kosher delivery diet starting monday! No shrimp. No Lobstah. No cheese on my burger. :::sigh:::
I kinda want to do an oomph on your doctors. That would probably get some results.
Sooooo happy about your family coming out, that totally rocks. I know how much you have been missing having family. And wait until they see how great you are doing!!!! Walking is good for all
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Brenda, I can't believe that happened to you here! I have been active on these threads for awhile and have never had that happen. Please know that there are many threads here that will support you! As usual, Rachel makes a lot of sense!
I hope you are feeling better and get the love, support and friendship you need.
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Brenda, I think that is terrrible, I have to travel too far so get my support group so I get it from BCO too. We are all routing for you and if you want anyone to curse for you ther are plenty here who will do it well and lovingly!! LOL Loved the night on Tamox know it well, only I can add have to move becasue my arm hurts again! Made a Apricot Chicken stir fry tonight, we have lota and lots of apricots. Not as tired today so made apricot/raspberry jam and dill pickles.
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Carollyn, do you know about canning? I have these baby food jars and lids and was wondering if I could use them to store some soups we make, but I don't know the rules about canning.
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Mary, PFC is short for post flucking chemo.......remove the L
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Brenda, is it possible that they have other support groups that may start up soon that would be more suited to you? I live on Long Island and went to Adelphi University. They have a very big BC support program through their School of Social Work. They have new groups starting up all the time, for all different phases of BC experience. They also have seminars in things such as Oriental Medicine, Reiki, Belly dancing, Nutrition, all free to breast cancer patients only.
Maybe if you have a university near you, or a hospital, they might have groups, or you could probably contact the the ACS for help in finding one.
By the way, I'm also on Facebook. I've noticed some of you talking about being on there. Is there a group on there that some of you belong to or have you just befriended each other on there?
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Hey there.
Whew! You girls are way overwhelming to keep up with -- or maybe I haven't gotten my brain back enough yet. But I do have something important to mention about Tamoxifen and migraines, in case it's relevant to others besides me.
I seemed to be doing mostly OK on my Tamoxifen until the last few days-- and then I started having migraines. I have a very bad past history with migraines (including a migraine induced stroke in Nov 1993, and I was on anti-migraine meds for 12 years) -- but I hadn't had any migraines at all for the past three and a half years (even by that point without the meds) -- until now. Given my past history with migraine, I have this "three strikes you're out" rule -- if I get three in close succession, it's time to call the doctor (it used to happen sometimes I'd get them even when I was on the meds, the neurologist would tweak up my dosage and they'd go away again). Well when this happened now, I Googled Tamoxifen and migraines and read that a Tamoxifen SE was that people with migraine history could experience "changes" in their migraine pattern. Well OK, I say going from none in over three years to three in three days is a definite change!
So this morning I called my oncologist to tell him I thought the Tamoxifen was making my migraines come back...but he was on vacation and his fill-in physician called me later in the afternoon. I told him the whole story about my migraines, the stroke, the meds, how I hadn't had migraines even without meds for over three years and now I was having them on the Tamoxifen, and what I just read about migraines and Tamoxifen -- he agreed with me, and told me it would be a good idea for me to go back on my anti-migraine meds. Since I was able to remember the drugs themselves and look up my last dosages, he called in prescriptions for me and I'll go back on them tomorrow morning.
So if any of you have migraine history (or didn't have migraines before but start getting them on Tamoxifen), thought you'd find this little tale relevant.
~Lena.
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Rose, I know your suggestions to Brenda were serious, but your phrase "BC experience" made me snort. Some how, when referred to like that, BC almost sounds desirable. I know, I know, twisted...
RE support groups - none of my doctors have mentioned support groups or any form of counseling to me, even my gyn who told me I probably have PTS. I guess they think I am tough and can handle my feelings.
Everybody talking about food is making me hungry...time for me to get dinner, I guess.
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The kids are all sleeping an dso is DH, do you hear that "the sound od silence" I just put clothes in the dryer, so I have about 30minutes before I can go to bed.
I have not been sleeping good, but I have been tired. I think I may try some chamomile tea.
My incisions itch tonight, so I guess they are healing, which is good, but boy they itch.
Dinnertime is horrible at my house, this one does not eat this, or why did you make that. My dd requested sandwiches for tomorrow, since we have finally have some HOT weather, it feels good.
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I've just got to tell you girls, something that happened to me on Friday. At work, I usually wear a hat, because thanks to Chemo./Rad. I'm left with very diff. hair PFC. Well, Friday I forgot to put my hat on, and a coworker, walked past me and said "Do you like your hair, that way?" My first reaction, was to rip her head off, but I just said "What do you mean, the color or the cut?'" Boy did she stutter, I let her of the hook, and explained that yeah, I can color my now salt and pepper, blond again, but I was growing out the chemo. hair. I've worked with this woman, for nine years, it's not like she doesn't know. What a stupid #$%...Then a friend told me he just saw Joan Biaz on a plane, and she has my hair. I goggled her, and he's right. STUPID PEOPLE. This was the day after, I emailed my doctor and was firm with him about the long wait, and wait no more, for test results, so I felt empowered. Boy, is she lucky, I'm on Celexa...So is my doctor.
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Just returned from a family vacation to Disney World and am enjoying catching up with you wild women. Like the PFC use. I assume PTS is Post Traumatic Stress Disorder. Don't have that, but I do have a serious case of PTBD, or Post Traumatic Breast Disorder , just part of the PFC experience. So now I can say that my PTBD stems from the BC and PFC experience. An acronym for all forms of crap so let me add one more, FUBC from the January Jewels. I think that one is self-explanatory but I want it on my license plate, but don't know how I would explain it to my kids.
Brenda I am sorry to hear about your barred membership to a crappy club. This is my support group and we all swim in the crap together. I love the fact that I can show up anytime I want, filter out anything I don't want, stop reading at any point in the conversation, post every crazy fear without judgement... I attended a couple different support groups, but found them...well...unsupportive. More often than not I left feeling worse than ever because someone would bring up statistics or some social worker would be patronizing and run the show. The ladies here just get it...and when they don't it is so easy to turn it off.
I am heading toward two years out and still log on regularly. I would miss you all so much if you quit coming to "group" with me. Throw me a BCO paddle..I'd be stuck in &#it creek without one.
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Rock ON DCMOM!
What an awesome post. "Barred membership to a crappy club". Perfect.0 -
I say FUBC and all others insensitive, heartless idiots. I too couldn't fit into local support groups. They were all 5 survivors and had forgotten most of their treatments. So here we are ladies....strongest support group on earth.
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Renee, funny you mention that the survivors forgot their treatments.....my own MIL was DX 20 years ago and had a mast with botched recon and implants (6 surgeries first year), full lymph nod e dissection, refused chemo and rads and is NED (YAY for her). I asked her if she had IDC ILC or IBC....she doesn't remember. WHAT? How do you not know that when you have been followed by an oncologist the past 20 years? She only tells me that her docs told her it wasn't a matter of if the cancer would come back it was when it would come back so I guess she didn't want to know what her DX was she just wanted to continue living and try and move on. She was 38 at initial DX.
When I was DX I was given the name of a nurse who was the breast care navigator for the hospital I had my surgery at. She was wonderful! She was my resource (if needed) for whatever I needed throughout my treatment. A friend of mine who went through the same shit a year before me had called the ACS to see if they could have some "survivors" give her a call for encouragement and experience.....she got calls from 2 women who were 20 plus years out and neither of them could remember a stitch about what they went through.....SO not helpful to my friend who was really alone as her family lived in South America. She was a great help to me obviously but I still feel bad that she didn't have anyone to walk her through each step she had to take.I don't know what I would have done without this site.
hugs
Diane
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crikey you guys... I go to sleep and wake up and a there are a million posts... I go to work and come back and there are a million posts ... its like living with little elves, FUBC elves!!!
Just on support groups - Makraz (Linda) I think she meant out-in-the-real-world support groups - not here on BCO.
Phew! One of the most beautiful comments I have kept is from a stage IV lady at my support group who made a comment to me after I had spilled the entire contents of water from my body through tears one nite - because let's face it it was all about me!!!!! Anyhooo I was saying how pathetic it was for me to feel so sorry for myself when everyone had been through chemo (no PFC for me), worse grade blah blah blah and she said "if we sit here and compare each other we wouldn't be a support group". Sigh - so wise.Oh Rach I love both those photos - so cute.. and your boy is so cute too.
I wouldn't go too heavy on that new diet by the way - you look pretty awesome to me.Ditto Diane - I don't know what I would do without this site too.
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DCMom - love your acronyms.
Leggy - why do some people open their mouth at all!! Jsheesh!
Brenda let us know how your brain MRI goes ((hugs))
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I know you elves are all sleeping .. but I am just cooking dinner for my family and I thought about support which we have been talking about - I'm a runner and I wear a support bandage on my left knee when I run because it has proven to be weak in the past and I don't want to risk anything happening to it... so I guard it and protect it and make sure it stays as strong as it can for as long as it can. Just like you guys. Oh no, too soppy.
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Breast Cancer Sucks
Treatment is Hard
Friends on BCO PRICELESS
Thanks to all for your daily support and open ears and minds to let any of us rant and hold our hands when we are scared or just plain bitchy.
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Totally agree....thank you dear sisters you are all god sent
Big hugs
Viv
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