Bottle o Tamoxifen
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Diane, you are quite the woman to be posting right after your surgery! Take it easy, and let others take good care of you while you can.
Hope you can get some rest tonight and that your pain is minimal.
Yeah, we are all a bunch of 'boob jobs'! If anyone dares to ask me that after I'm all done, I think I'll say, "YES! I had a boob job. But first I had to get a mastectomy!"
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Quickies:
Diane posted on FB that her surgery was a success!!!
I have a friend who has gone off Tamox without trying a Tamoxivacation and she thinks she is so much better but how do I tell her she's become very annoying and hyper? I liked her better on Tamox.
PattyB Part Deux- you crack me up. And you have more courage than I do, I am afraid to say I have nothing happening after a month on Tamox, like that by saying that I will make crap happen.
Thanks to all for the discussion of health insurance not paying for Tamox if you refill the Rx a few days ahead of the end of the month... I filled the Rx more than a month in advance so I'd always be a bottle ahead, and sure enough, today when there's like a week left on the Rx I tried to have it refilled and insurance wont let me until the 10th. Thanks to you guys I was calm, I said sure, I'll come back on the 10th. Like as if we needed more stress and pressure and trips to the pharmacy... jerks
Speaking of jerks, I had some plane tickets that expired a few weeks ago. I thought they were good for a year from the date of travel, which would be October 27, but they start the year from the date the tickets were issued, which was August. I found this out after you know, the many phone calls, but they all said I should fax the company and see since I had SFBC kinda taking my attention from all this ticket nonsense. So I fax Delta and I get back this bizarre letter that is so officious- but at the same time apologetic, its just not their policy to give a refund even for valid medical reasons. The economy and corporate crap just suck dog doo.
Why is everyone surprised that all the ONCs are giving us different lists of supplements and stuff like aspirin? We are not all the same, just because we all are BC patients. I have low iron, before SFBC, so I take iron. I dont take baby aspirin because its not called for. Chelev's list is from her ONC and she did chemo, so I can only hope and guess that some of that is to help restore some of what chemo may have done. We all got the rap about how all of us are different, all our SFBC is different blah blah...
Allie- I thought you got your Vit D test the same time as me, and we were racing to see who got it back first? Wasn't that you?
Meg- Is meg's surgery now? Hey, if it is, happy birthday and all the best for easy surgery and recovery babe
Diane- hey you posted! Cool! Oh c'mon, you are NOT a baby for crying on the preop thing. Today I was having hair done and as she was washing out teh colors I had to hold my head a certain way and it hurt but I couldn't help reflecting on all the times and ways the nurses and techs would have me sit or get into a position that hurt for all the various SFBC crap. I mean you get a whole new perspective on discomfort. Those moments - those hours - before surgery, ANY surgery not just SFBC I think every person goes a little nuts. It's anathema to put yourself under the knife, under anesthesia. Its scary as all hell. Give yourself a break wouldja please? Remember if you do take the Tylenol with codeine, you aint gonna poop. Just so ya know. And it does mess with your head BUT I think the big lesson about breast surgery is TAKE THE FRIKIN PAINKILLERS and TAKE THEM BEFORE IT HURTS. Besides they help you sleep and sleep is the best thing you can do at the moment. More you sleep the faster you heal. Not being able to hug the kids or pick them up sucks the most. But they can hug YOU. Not up top but they can't reach there anyway. Drains suck. Bummer about not having instant recon. Well at least you are symmetrical.
and PattyB Part Deux, you crack me up again!
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Welcome LindaSue- Trish gave you the straight poop ::::waving to Trish and hurrah for 3 years done!::: Look I dont know what motivates some people to go all Halloween on Tamoxifen. Yes, there are some people who can't take it, and that actually sucks for them, because just about everyone who is told they can't take it is scared that means their chance of recurrence is going up or they're going to have to take some other treatment that would be more difficult to handle than Tamox. None of us are stockholders in the company that makes Tamox (are we? anyone?) and but we're all grateful that we have another way to try to protect ourselves from SFBC (btw, that's SFBC = Sheet Fook BReast Cancer, and I dont mean Sheet Fook) and on this thread we're all trying to help each other make it work... (I sound like Tim Gunn now). On the threads that say things like "Anyone NOT taking Tamoxifen" they are saying from the outset that they aren't taking it, so if you go there, that's the news you are going to get. No slight to the other thread intended. I have no right to speak for others on this thread, (as I just did) but from participating and reading here for months it seems we are here using our wits and our wit to have the best possible experience and take the frikin pill. Bottom Line: take it and see. Happily, any bad SEs from Tamoxifen go away when you stop taking it. It's not such a huge commitment.
I do have some ideas on how to start Tamox, but they are just my ideas. No proof.
There are some tips - always confirm with your ONC- like if you are going to have surgery maybe stop Tamox, and if you have SEs we have found some things that work to deal with it.
And I have links to some big big studies on Tamox that show that yeah, women report side effects on Tamoxifen but guess what, women report the same side effects on placebo- that is, except for the hot flashes. And you already have the Effexor and the Hot Flashes so...
You could do a test to see if you are metabolizing Tamox before you take it, a lot of people are doing that. And there are drug interactions with some stuff you might be taking, but a good ONC should be on top of that.
I could go on but tomorrow there will be another newbie and I'll be repeating myself... i should write up a FAQ... but I hope you will stick around here and catch up on posts and ask questions and share some laughs.
Oh here's one I did, I wrote up all my "symptoms" before I started Tamox. So when stuff happens I can look back and say, oh yeah I had that before.
and we joke a lot about blaming stuff on Tamox- especially since Helena's scalp starting itching and she wondered if it was Tamox and it turned out to be... head lice.
So give it a whirl, keep a good thought, join us on the train and my advice- try not to read the bad news. Stay positive.
Trish btw- did you ever try the Ivory Soap thing for the leg cramps?
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WOW Diane, what a brick you are!
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Hi Diane - so great to see you here, you are doing so well. As for being a baby, I totally lost it in pre-op, I had been so brave up till then but once they gave me the first relaxing drug b4 the big mumma of all drugs it must have let my guard down and I was crying and asking for my mum. Mmmm... she passed away 37 years ago. It's a real tough time, we're only human its OK to be scared.
Breast augmentation ... HA! Lots of boobs there, and I ain't talking about the augmented kind!!!
I also didn't take much pain meds but had something to help me sleep - I was also in hospital for 5 days so was waited on hand and foot. BEWARE OF CONSTIPATION ... it was a killer 5 days later!!!!!!!!!!!!!!!!!!!!
Hi Lindasue - the most frightening thing you will see here is our sense of humour. Welcome aboard.
..I'm never going to hear the end of my head lice am I...........:)
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Rachel,
Waving Back!!! No I haven't tried the ivory soap - hadn't heard about it til it came up on the boards here. BTW - I started year 3 on tamox. But I'll take all the encouragement that I can get!
Have a great day ladies!
Trish
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Morning, ladies. Had my genetic testing and tamox metabolizer test yesterday - I'll find out in a month at my next appointment what those results are - hoping for negative on the genetics, of course, but if they are positive, we've already discussed and I will get a bilat mx before the end of the year. Onc feels I am a good metabolizer for tamox, but always likes to be certain and leaves no stones unturned, which is why I love her. Vit D levels are great, and my tumor markers and liver enzymes are baseline low, which is also good. If genetics are negative, then I will have an MRI with contrast in December instead of a mammo my rad onc wanted, because I have dense breasts and am still tender from rads. Did I mention I love my onc? She said then, in February or March, I can have a mammo but always with an ultrasound, just to be sure.
They told me hot flashes on tamox are what they want - it shows the drug is working, as does the facial breakouts, so I guess I'm good, and so far, those are the only se's I'm having, with the exception of occasionally getting that little bit of blood if I wipe too hard (sorry for the newbies if this is TMI). Haven't noticed weight gain, but that might be because I'm bound and determined to lose the chemo fat (so far, since August down 8 lbs) and am eating as clean and organic as I can with a junk food junkie for a DH and am working out, though Rachel has me beat with the kid on her back on the elliptical for a cardio workout!!
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Hi all--
Rachel--I am getting my Vit D (and other blood work) done next month when I go see my onc. I am interested to see how it it although I don't always take the noon vitamins--do take the morning ones so I may not see as much progress as I should.
Ooops now I have to go back and see the last pg--forget what else I was going to say...
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Diane, posted to you on Motivation. You're doing great!
Chelev, I love your onc too!! Congrats on the 8 lb loss girl!!
Rachel, well said....as always!
hi Helena, unfortunately, I don't think you will down the lice...You have such a great sense of humor (I see the Aussie's spell it humour)
Have a great day/night all!
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Hi all - I haven't been much of a poster lately but been lurking. I went to the onc. today and she said no more Tamox. for me due to the blood clot and the complex ovarian cysts both of which can be attributed to Tamox. Unfortunately as I am not in menopause there isn't anything that I can take. She did the CA 125 test and said the cysts could shrink as I am off the Tamox. and that I should have another TVUS in 2 months to see how things look. My blood clot is still there a little bit so she wants me to take an aspirin a day. She referred to my cancer as a "baby cancer" so I should be OK by taking a tamoxie break and waiting for menopause. I am not real comfortable with waiting too long as my mom's cancer was early and small when detected and she did not take tamox. for very long due to side effects and her SFBC back in 6 years and she passed away after 7 years. Who knows when I will finally reach menopause! Never thought I would miss taking tamox. but it did give me a sense of comfort knowing I was doing my best to ward off the evil one. Sorry if I am being a downer but I wanna take something!!!
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Kookiesmom,
There are options:
Surgical menopause and then you can take an AI (removal of ovaries)
Chemical menopause an then you can take an AI (Lupron shots)
It all depends on what you are confortable doing.
You are not being a downer! You are being honest that you want to do something to ward off the beast.
Gentle hugs!
Trish
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Morning all - toot toot,
Chelev, glad to hear about the facial breakouts - that I do have and not much else. I am using a antibacterial face wash (recommended by my GP) - which has worked a bit - but it was a hard call between more wrinkles or more pimples. Crikey, what joy.
Kookiesmom, you're not a downer honey, I know I have thought long and hard about what I would do if tamoxifen wasn't working for me, and I am just so sorry about your mother. SFBC taking mothers away. Like Trish mentioned you can think about an ooph then go on an AI, that is what I was going to do if I was a low metaboliser - I didn't do chemo so it is pretty important to ward off these dreaded hormones and I'm 47 so getting close to menopause anyway. Not a great option but it is an option. Are you nearing menopause? Hugs.
Meeting a friend and her daughter today with my 2 DDs - really need to stop lurking on this board - it has me in its clutches at the moment. I do remind myself it is better than watching telly so it can't hoit can it?
Trish - 3 years - how awesome is that. Congrats.
Off for a run with my iron lung - 2nd one since my new fipples - hopefully the squeak stays away!!!
have a great day/nite everyone
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Helena & Trish- Thanks for thoughts and hugs! The onc. did mention an ooph if I didn't start menopause. I had my last period in June and feel like I could get it any minute again. Dr. asked if I was having hot flashes since stopping tomox. and I haven't so she will test my blood to see if there is any signs of menopause. She did mention both the ooph and chemically stopping the ovaries but she wants to wait & see. When I mentioned surgery she said not now with the blood clot still still hanging around. Oh well, sucks being me sometimes! But I'll be OK!
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Evening Ladies!
I had a visit with my rad onc today - only other time I saw him was 4 months before I started rads! But he does leave me feeling positive. I had 15 rads - I have never met or heard of anyone else who had so few (if they were having rads at all). One of the techs told me I was having DD rads!! Now I did have DD chemo and that was explained to me but all I was ever told 'officially' about rads was - 15 rads and you're done. So today I asked him about it - you know just so that I could be confident that I did get the treatment that was of optimum benefit to me and this is what he told me. He said that more recent research has shown that fewer rads of higher intensity have very good results. In fact 13 rads of suitable intensity is the optimum if it can be tolerated. He said age, general wellbeing (everything considered!), and distance from treatment center can be taken into account. He said he had read my file and noted that I was doing DD chemo - my 'team' noted that I was positive about treatment and amenable to 'doing whatever it takes' and taking that plus the fact that I had an 80mile round trip for treatment he felt that I would be 'ideal' for DD rads. So basically I got the same 'dosage' of rads over 15 sessions as others would get over 25 or 30 rads. What mostly surprised me about this is the fact that 'my team' (not sure who they were!!) seemed to think I was positive and up for it because I felt like a total wimp and baby throughout all this!!! Anyway - bottom line I don't need to see the rad onc again!!! So that's one dr. I can cross off the list!!! Yeah - progress!!!
Diane : Delighted to hear you are on the mend! Hope everything will continue to go well for you and don't worry about those tears - you have many soggy eyed sisters in this!
Chelev: Love your hair. How long has it been growing? I'm going on 4 months PFC and have about an inch of hair but it seems to be growing very slowly - maybe I can blame tamox for that!! Good work on the 8lbs - from one who knows how hard it is to lose weight.
Rachel : Eloquent as always - you always seem to say just the right thing.
Kookie : I hope that clot sorts itself out. I remember when my onc said I would have to take Tamox I was a bit disappointed (mainly at the thoughts of taking meds for a prolonged time - seems silly when I have taken 'the pill' for about 20 years!!) - now it's like a comfort blanket but remember there is more than one blanket and you will find yours:-)
Trish : 3 years down - you are well over halfway -WayHey!!
Helena: Sharing the same humour (rather than humor!!) - I could organise sending you some WD40 oil for that squeaky foob - it might add a nice glow to those new fipples too!!
So lets see yep I've had either a procedure, dr appointment, rads, chemo or blood test etc at some stage every month this year so far and will have in November too, nothing scheduled for Dec yet. By the way question for those of you who had ports - how long are they left in???
Going to watch Law & Order now!!!! Don't judge me!!!
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ok ladies - 1st off, thank you for all the woo hoos (definately made my day)
2nd - I am STARTING my 3rd year on tamox.
Have a wonderful day - gotta take dd to dance and then to confirmaiton class
Hugs to all,
Trish
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Trish, congrats on 2 years completed on the Tamoxi train!! Here's to a trouble free 3rd year!!
kookiesmom, you could NEVER be a downer, nuh uh, not here with us, this is one terrific train full of passengers!! one big lovefest! haha!! Hope the aspirin crushes that SF clot!!
Ainm, you are doing so great! What spirit you have. And see...your team (whoever they are) saw your positive energy and they believed in you when you doubted yourself. Awesome!! Enjoy Law and Order!!
Helena, I love when you say 'crikey' LOVE IT!! hope your iron lung run isn't too bothersome. I hope you have a fabulous time with your friend and all the DD's!! What fun! Well I hope its fun!!
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Hello ladies--
I am just finishing my 4th year on Tamoxifen, and thinking of stopping. I had a very small DCIS and don't know if the continued risks are worth any benefit I would get now. Just had a clean m'gram yesterday.
If anyone has any input, let me know!
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Oops sorry Trish! But still 2 years down is great I'm sure that year 3 will fly by!!
Inspiewriter - not sure what exactly you mean by 'continued risks' but I would say that after doing 4 years why stop now when you are so near a full course?? I was with my rad onc today and he said that a few years ago when Tamox was the only drug of its kind it was hailed as being a wonder drug it's only since alternate drugs have come on the market in the past few years that we are now coincidently hearing the 'downside' of Tamox. It's worth thinking about!!
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Thanks Ainm, I appreciate the input!
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Hello all, and welcome Linda, enjoy the ride.
I have not been posting much, it has been a difficult week. Lastnight I went to bed at 6pm right after dinner. I have been exhausted and every joint in my body hurts. Not sure if it is from the tamox or being thrown into menopause w/ my ooph, or just the change in the weather.
Glad to see that you are doing good Diane!
Hi, Rachel,Helena,Kari, Leggy and everyone else.
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Chelev you mentioned "little bit of blood" from wiping. Just a thought...would gentle baby wipes help?
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Chelev,
It's probably a good thing we both weren't in Joseph's shop at the same time. SOmething would have gotten broken! I am probably the biggest klutz there is. I even fell down the stairs into the ballsroom of the Four Ambassadors Hotel on Miami Beach at my Senior Prom! Dumped my daugher our of her stroller on the deck of a submarine too!
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Hey Rachel, happy to hear I'm cracking you up! I enjoy reading your posts, too. Perhaps we should join a Mutual Admiration Society (as my Mom used to say).
Feeling just the teensiest (is that a word?) bit guilty that I cancelled my 'fill' appointment tomorrow. It's about an hour and a half away, and we've been going every week except for one week when I had a migraine. Anyway, it's supposed to be stormy all day tomorrow and my soon-to-be 14-year old ShihTzu goes crazy when it storms. I just couldn't see going off and leaving her for a good portion of the day when I had good reason to suspect she'll be going crazy.
So I called and cancelled this week's fill and will go another week sitting at 780 cc. Maybe it's a good thing, since last week was sooooo painful (although I was good to go by Saturday).
Helena, I love that "crikey' expression, too, by crikey! it just sounds weird when an Okie says it.
*The biggest SE fear I have about Tamoxifen is the risk of blood clots. I need to try to find out more about that, especially since I'm a more 'mature' woman (meaning, qualify for senior discounts).
Hope all of you are having a good evening!
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Hi Girls,
Mary, I know what you mean, I worked really hard on Mon. and Tues, so I could go to an appt with my surgeon's nurse today. Last night I was so tired, and hurt'n, but I don't have to see the nurse for a yr. She said I was doing good, and rec. a bra The Ipex or Apex (?)by Victoria Secret, which she showed me. I've bought so many bra's since my lumpectomy's, and they all hurt. My NP had BC, so she ought to know. Funny, she just lifted up her shirt, I guess we all get used to showing our boobs. I asked her about supplements and she said I should take a multi. vit, calcium, and 400mg D3. I also take a baby aspirin when I think of it, because a Dr. Rosenthal, on TV rec. anyone over 50 takes one daily.
Hope you all are feeling normal,
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Anim - I am 5 1/2 months post chemo. I haven't seen much growth in the last couple of weeks, but that could be because I've had a couple of trims and now it needs to catch up again. Or, maybe the tamox is slowing it down.
Thanks for the suggestion about the wipes, Luna5. i don't have it very often, but will carry baby wipes with me if it does. I think some of the other women are experiencing that occasionally too.
lbrewer - oh, that was a definite possibility in Joseph's shop. All of those implements on the wall - one misstep and you could cut something off! I am the offical klutz at the office - I've had a few falls and spills and sometimes they'll bring out the orange cones for an area that they are joking with me is dangerous. It's pretty funny that everyone knows I can and will trip over perfectly flat ground.
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Hi, I'm chiming in to say that I'll be starting Tamoxifen tomorrow after being quite freaked out about all the SEs but I feel like its the best choice for me to keep the bad stuff away. My onc recommended taking Vit D, Calcium. Wondering if anyone takes Black Codash for hot flashes as someone recommended it to me. Also same friend (with bc) also said she splits her pill and takes half in AM, half in PM. My onc. didn't recommend that but I think I'd like to do that. Does anyone think there are issues with pill splitting?
Lastly - Leggy, I had to jump in and say that the Ipex wireless bra by Victoria Secret is the only bra I've been able to wear (I had a mastectomy and I'm really small on the other side) - these bras are comfy cuz on no wire - and - they're puffy enough to look 'normal' if that makes sense! They had the older style on sale recently so i picked up a few until my implant surgery.
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one of those gotta-make-notes-as-I-read-the-page-or-i'll-forget-someone posts
hey, thank you gals for the kind words about what I write. believe it or don't, I write all that and then I wonder if I said something wrong, so it really helps to hear I got it right
inspwriter- I did see someone post here about new research about not staying on Tamox for the entire 5th year. As I am just starting out, and this was in a real publication like ASCO, I just tucked it away to see about in a couple years when the rest of the research is in. But you are in that 5th year so its timely for you. I am guessing you didn't go into menopause on Tamox, so they can't switch you to AIs? What kind of discussion have you had with your ONC about this? This whole sort of balancing act is part of the reason its SFBC...
kookiesmom- I am really interested in what is going on with you and the whole tamoxiproblem. No way are you a downer! (Good golly, you are the mother of an alien baby for crying out loud....) Does Evista have the same clotting issues as Tamox? I learned a lot from the discussion of what can be done if you can't take Tamox. Please continue to update us on what goes on
AinM yes I have heard of the shortened program and it was offered to me but even though its results after 12 years are actually better than the standard course, I opted for the old fashioned 6 weeks because they had 30 years of data on that and I was (and am) so freaked out that my kid was 11 months old at my DX ... single parent... so I gotta take whatever's been tested over the longest period of time... but yay for you, I am jealous! I can send you a link to how cool it is if you like.
mary- way bummer
glad to see you though and you have been dealing with a ton of other crap babe. How is that other teacher at your school? lbrewer and chelev- and me with the kid on my back horsing around that narrow salon with the mooseheads and scalpels on the walls... and you know it's not going to be easy to explain this to the rest of the gals on this thread...
PattyB part deux- I think staying home on a stormy day with your Shih Tzu beats schlepping in to a doctors office for a yucky procedure makes perfect sense. It sounds divine! Not to mention safer- not such a good idea to be on the roads during a storn, especially after a procedure.
Love Helena's crikey and AinM's Irish lilt...oh Ain what was that you said to my son? Did I dream that?
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Hi Rosered and welcome aboard
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Top Chef tonight!
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Hello All you great women,
just a note about the Black Codash. It is a BIG no-no as it is a phytoestrogen and is really contraindicated with Tamox. It will inhibit the drug's effectiveness and that's the last thing we need!
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