Bottle o Tamoxifen
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mary- thank you, oh thank you. I just need to know someone out there is having sex, and hopefully, good sex
jules- my friend who is a surgeon had her lumpectomy yesterday, she is not telling her 6 year old and 9 year old ANYTHING. On FB I don't even let friends mention my son. I don't put much personal info on FB. And my name isnt even really my name, its all weird.
leggy- really, I am getting a 2x4 to go have a chat with your ONC. fwha? They are telling you sort of the right things but in the most ridiculously eccentric ways, that make it seem like stuff is something it's not. I had a PET/CT scan, it was my idea, and I had the idea then that if the PET/CT scan didn't show a metastisis, i wouldnt need Tamoxifen. of course that's poop. On the other hand, if I didn't take tamoxifen, they'd do the PET/CTs to try and monitor me. On my PET/CT report, it did spell out the whole thing. If you read it and didn't see anything about cancer being somewhere, you're clean. Then again, PET/CT scans can only show a cancer that's larger than 1cm. So, you can be clean and not clean. And yes, the reason why most people don't do PET/CT scans is because a whole buncha stuff can show up that turns out to be nothing. Mine said possible inflammatory joint disease on my clavicle and come calcifications on my heart. I flipped out! That's exactly why they say don't do it. So natch i went to my GP and internist and specialists for inflammatory joint disease and heart disease and they said what my ONC said, it's nothing, that's why they don't recommend PET/CT scans. The inflammatory joint disease in the clavicle is probably not inflammatory joint disease, doesnt look like it, and it doesnt start in the clavicle, even if it did and was, the Tamoxifen and Zometa is exactly the stuff to take for it, if anything. And they said eveyrone over the age of 29 has some calcium on their heart. So that's what the radiologist meant.
I forget why you were getting the PET scan in the first place, and not sure if there's a difference between PET/CT and PET scan, so I can't say what for that possibility.
yes, I believe they do do the PET/CT scans for checking metastisis, and that is sort of why we were doing it, but as much as yes, mine was clean, its really not conclusive... because there could be metastases of less than 1cm. Like, if someone has a metastisis and its showing up and they treat it with chemo or RADS, they can see if it shrunk or spread, but otherwise, you can't see poop.
maybe you had the PET/CT because you have back pain and they want to rule out metastisis as a cause? Of course, I'd be chowing on those Vicodins while waiting for that answer too!
And as far as "there's nothing more you can do" that's another weirdo way to put things. True enough, I already radiated the bad boob so we can't radiate it again.
is this making sense out of the nonsense you were told? They just said it so backwards and inside out as to make it fearsome. Is English their first language? I have a 2x4 ready to teach them how to speak to a patient- idiots.
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Hey Leggy - I'm standing behind Rachel with a cricket bat!! I'm also standing here with ((((((hugs))))) - talk about bedside manner. I can only guess they are reacting to the pain in the back and trying to be helpful - bad management.
thinking of you
Helena
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Girls, you always seem to say the right thing!! Thanks! Wow, Rachel, my Onc. is Danish...too funny, huh. No wonder I have a hard time figuring him out, not that there's anything wrong with the Danes....sorry a little Seinfeld ripoff. Anyway, I did have a CT scan in Nov.08, when I had a stabbing pain, in my chest during rads. and my Onc. was concerned that it was a blood clot in my lungs and had to rule it out, before starting TX. It showed something in my heart as well, and now that you mention it, I think it was calisification. They sent me to my GP, and he had me get an EKG, and said it was nothing to be worried about. You let me think about all this, a little more clearly, and remember the heart thing. No blood clot either, Thank God.
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Yay Yay Yay Leggy! Well this reminds me of what's going on backstage here... maybe this sounds familiar????
And... not to disparage any Danish or Dutch folks here... but... although I was mostly kidding when I cracked about your ONC not having English as first language, now that you say he' Danish...
20 years ago the love of my life was a Dutch medical student. He did have a way of being incredibly obtuse. Sometimes I found it to be a lovely sort of naive honesty, just blurting out what he observed, but other times it was cold to the point of cruel. I lived with him in Utrecht. He broke up with me twice, and the second time I moved back to the U.S. I remember well what he said when he broke up with me- how now we were only making love twice a day, 3 years of living together later. Once home, I got a couple letters, one was discussing the architecture on his latest travels and he inserted one line: "Don't laugh, but I want you back." And then continued with his observations about architecture. (I couldn't figure out what to say, I wanted to say "then come here" but that seemed like something obvious, and that he obviously wasnt going to do.)
Then I got a letter that his friend who was supposedly my friend as well, had read my tarot cards and wanted to "warn" me about terrible trouble coming my way. (Anyone who reads tarot cards knows that reading someone's cards without their participation is a curse.)
Some months later he wrote to me that this same girl who was supposedly his friend was pregnant with his child, and that he was writing to me wearing a robe I had bought for him. I called him immediately and said even though we were broken up and all, I'd still help him with this pregnant friend. He said oh, he diagnosed her pregnancy himself and he was happy. Fine. He moved to Zaire with her to practice medicine.
In January this year around New Year's in a fit of Auld Lang Syne I searched for him on facebook and found him, now in Rwanda. Lovely pictures of his now-wife and their gorgeous daughters. When he saw photos of me, he remarked how fat I had become. This same cold obtuse manner. He was still gorgeous. I answered him saying that yes, I had lost a lot of weight before we met and now had a problem again. He remembered that. He asked impolitely about the father of my child (there is none, I bought sperm)- this after 20 years, right after "hello".
OK so this is where the strange and sometimes funny parts start to come (the point of the previous was to illustrate this sort of unintentional Euro coldness/cruelty/blurting stuff out).
1- I had thought it was "safe" to contact him, as I knew he had been in Zaire and could see he was in Rwanda. Next thing he tells me is... he is moving his family to Washington DC in July and coming to visit in April. Oy. A few days later I get the BC dx, January 26. At least it was a suitable excuse not to meet them in April. I told him it's a pity I'd be too tired to meet them during RADS. 20 freakin years he's in Africa but within days of contact, he finds out I am fat, sick and he wants to visit with the bitch who seduced him from me and their gorgeous family- he's a Director of a health program and she's a commissioner from UNCHR, and I am unemployed single mother with breast cancer.
2- Last week he writes to me about how he's having a moving party in July in Rwanda, sending pics of his rugged gorgeous self on his motorbike from a big trek across the wilds of Africa, telling me there are more pics of the bike trip on facebook and a mention of his heart being broken in an extramarital affair. (Mentioned much as he mentioned years ago that he wanted me back.) What? Whatwhatwhatwhatwhat? Now I must admit that night I had a wild and wicked night of ecstatic schadenfreude- I was delighted. He's cheating - not just sex but love- on that manipulative bitch who wrecked our love affair and too much of my life, put a curse on me and all that. But I did not ask him about it, even though he had brought this up in his email just as bluntly and obtusely as the part about me being fat and my kid having no father.
3- I checked on facebook, I think mostly to find Jules and while I am there see that for some reason my friend's status updates don't show on my page so I missed a lot, including this ex's bike trip pics. So I go to look at his page and see his status updates, which include a bunch of posts last week about how his heart was broken, how this woman he loved hurt him, etc. Now this is pretty unbelievable! His kids are on his facebook page, his friends in Holland and Rwanda and all over the world are there and I expect his wife is as well (and maybe the lover?), and here he is just as much like a robot on acid blurting out all this incredibly personal and damaging stuff, all the while grinning from pictures of this wild motocross type trip and yakking about moving and the party and chatting as if he was discussing the weather.
I don't know if this is coming across the way I mean it to for the purpose I meant- to illustrate how there is this weird sort of way of communicating that comes from a certain European upbringing. I mean to say that it sounds like your Danish ONC is cut from the same cloth as my Dutch Doctor ex. Cold observations to the point of cruel, honesty presented with a weird slant as to make the information indigestible and incomprehensible.
As you say... not that there's anything wrong with that... uh... until your medical health and sanity is on the line.
My thinking is now that I was LUCKY that relationship ended. (I had already had to satisfy myself for the last 20 years that if one line in a letter of architectural observations was all he could muster to win me back and he couldn't stand up for me against his Dutch friends - they didn't like me because I was American, period- then his character was lacking anyway). I feel that bitch who stole him not only deserved what she's won, but she's equipped to handle it in a way that I am not. I can not for my life imagine how his daughters manage with this life, I sure don't want that to be MY life.
But now that you tell me he is Danish- and while I was living there his friends and contemporaries were Norwegian, I also have a very close friend who is Swedish, who I am sure can relate although happily, she does not have this particular affliction (and I mean this cultural obtuse coldness, not bc)- it does make some sense of your ONC's near-evil bleatings.
Meanwhile... whatever you do... don't piss off the Aussie!
(she's standing behind me with a cricket bat!!!!!)Oh and I wrote back just last night to my Dutch ex, i said I wasn't going to ask about this extramarital affair from his email, but now that I see it posted on his facebook page, what gives? Open marriage? What do his kids think? His wife? How was he going to carry on his love affair in Rwanda if he moved to Washington DC anyway? He wrote me back, I am sure he answered in the same robot on acid way, but I gotta tell ya... as much as I really enjoyed (to my embarrassment, I don't believe in delighting in other's troubles, REALLY bad for karma) knowing that he has extramarital affairs, I really don't want to know or hear about how he does this. No matter how lovely and seemingly well-adjusted his daughters may be, this sort of thing must have damaged them for life- probably making them the same way as he is. Yes, it is a judgment on my part, and I try not to judge others, but I'm sorry, that's just plain wrong.
And... now some of the other news he had makes more sense as well. Sadly. When we were together, his best childhood friend committed suicide. He would not allow me to attend the memorial, and there was some big mystery there, evidently I was mentioned in the suicide note, but no one would say what was said. I have a picture of the friend hugging me, and all I got from anyone was something about how since my ex had found me and was happy, his friend knew he'd be alright. The other best friend, the Norwegian dentists, came out as gay but this was somehow not acceptable and he's presently in an institution, also having tried to kill himself, as well as my ex's little brother, in another institution, also having tried to kill himself, and not clear if it's related to his also coming out as gay.
One more thing- those of you who a) have bothered to read this whole long post and still care and b) are connected to my facebook page can easily find him and see his postings. I ain't makin' this sh*t up!
Here's his last status updates, perfect illustration of what I mean...
Driving my bike to Ruhengeri the rough way..with Olivier and Randy tomorrow..
June 12 at 2:07pm · Comment · Like
She touched my genitals and my heart. I liked the former, and I learned from the latter...
June 10 at 3:14am · Comment · Like
All my friend are invited for our Farewell party in Kigali 4 July..just RSVP ok?
June 9 at 12:53pm · Comment · Like
Does this sound like your ONC speaking?
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Hi. I just started Tamoxifen yesterday.
I am not sure the extraction of my oncilogist, but I think he's a very good doctor and I ran into him buying plants with his wife and kids yesterday. He's super nice, young and bright. I had my last weekly visit with him on Friday after completing five months of chemo, a month ago.
Obviously, it's too soon for me to know what Tamoxifen side effects I might have. I have been so very wary of starting this medication. Two things have strongly encouraged me to start right up and see it through. One is my purchase of an elliptical trainer last week. I love the extertion and being able to break an intense sweat daily. I hope to lose some chemo weight and other weight I have gained in the last couple of years.
The other is a presentation by Dr. Larry Norton, Deputy Physician-in-Chief for Breast Cancer Programs at Sloan-Kettering. One of the January chemo group women shared it and some of you may have seen it. The site is http://www.mskcc.org/mskcc/html/92358.cfm. The matter of fact, scientific way he talks about the effectiveness of Tamoxifen compared with chemo, is really helping me to feel good about starting.
I already take Lexapro and hope that if I am prone to any moodiness from the Tamoxifen, that will deflect it. I'll see how this all goes.
Rachel, I read your entire post and found it interesting! Your Dutch doctor ex is a character to say the least. It's too bad some people are so insensitive, especially a doctor. I know having cancer has helped me pay more attention to what others are dealing with. It's also helped me not to waste my energies on people I feel are destructive to me. Those are really silver linings for me in this whole ordeal.
I hope everyone feels well and is having a good weekend.
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Year of the Hat and all- I got a too involved telling the story to make the point to Leggy. I'm gonna edit it to try to make it clearer. I'm not real involved over the whole ex thing, I mostly find it amusing- and validating, but again, that's not the point. The point is if Leggy sees something familiar from my story in the manner of speaking of her oncologist. I'm not sure if I'd let go of my 2x4 to smack some sense into her ONC even if Leggy says it is familiar. Nothing excuses his behavior, but if this explains it and relieves any of Leggy's worry about those misleading statements, then I'm happy
So, my bad. I also thought it might be an amusing diversion (especially for anyone who had their boyfriend stolen), and if it wasn't, I apologize for that too. Sometimes we DO get to see what comes around go around..
:::giggle:::I totally totally agree with you on the part about not having energy to bother with people who are destructive.
I'm definitely going to check out the link- thank you!
Its terrific your ONC is a good one, and young... mine is 66 and thinking of retiring.... selfish me wants him to be with me for the next 5 years of Tamoxifen and Zometa and who knows what else.
I also have an elliptical trainer and I use it almost daily (except during DC treatment) but... I should work out as hard as you do - an "intense" sweat... not moi! But I do either hold 5lb weights in my hands or have this big weight on my back ...
Here's hoping you have a good safe easy ride on the Tamoxifen train- and so us all!
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OMG, Rachel you have me in stitches, you are so funny!!! I think I'll join Facebook, just to see your Dutch doctor, on his motorcycle. My young Danish doctor is very good looking, as well, blond curls, and I noticed while he was examining my breasts, (2wks ago), he has really beautiful hands!! Perhaps, his cold frank way about him, is a defense mechanism against the girls...so to speak.
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Leggy- I am so pleased
That is exactly what I was hoping- that you'd get a laugh Here- you don't have to join FB, this is the pic he sent me of him after his biking trip... He's actually better looking, in this pic he's got days of dust on his face... and it does sound like these two have a lot in common. 
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Oh, he is hunky, isn't he! No wonder women have, put up with him.
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Don't worry Yearofthehat, we'll get you through this.
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Hi everybody! I to have been on tamox for the last year with minimal side effects although se seem a little worse since my onc took me off paxil. I am wondering if any of you worry about effects of tamox down the rode. I have a friend who had bc 20 yrs ago. She was er+ but doesn't know her2 status. She also had lymph node involvement. Had chemo and tamox. 2 years ago she developed a recurrence-triple neg. How is this possible? Was tamox to blame for triple neg? Can anyone shed light on this? I do worry about being on tamox mostly because I don't want triple neg cancer someday.
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I go tomorrow mornign for my three month check up on Tamoxifen. I have had very few se's, but I think the Effexor XR helps. A friend of mine that had a hysterectomy told me she had been on prozac and had not menopause symptoms. I do get night sweats and an occasional hot flash which is not bad since it has been cooler than normal here for this time of the year. I was very irritable at first, but my sister and brother reminded me that I was always a bitch!!
My name and all my info on facebook are real, it is a great way to talk with my brother and sisters in Florida and Cali. Oh how I wish we all lived closer. I really miss my family.!!!!!
Have a great Monday!!!!
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Rachel and all-
Don't bother editing for my benefit. If you keep at it, this could be my summer reading - LOL. I was the scorned woman long ago and had a hard time shaking it. Eleven years and he left me when he fell into some money, I mean within weeks of his windfall. I may never really be able to find the humor, I must admit. I am rolling my eyes at the pic your Dutch doc posted. Goofy guy. I am around some egotistical academic types. I have a very dry tolerance for them!
But I love the picture of you on your elliptical! What a cute baby!
I still have neuropathy and am not so alert mentally. I have been up since 3 AM with intense hand pain. If any of you had AC then T, how long did it take for the neuropathy to fade and for you to regain your ability to function? Do you ever?
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Yearofthehat,
You are pretty much right with me on the tam. I just completed week one.. My wish for you is only brighter days!!! We will be alright!!!
1,818 more pills to go...like I said ladies...yeh I added em' up...I am a GOAL SETTER!!! Gotta make it to #1825!!! This is definately one gaol I will achieve!!! Hopefully SE free!! Staying positive, although sooo tired yesterday and today...?? Did have a headache every morning for like 5 days...but did not have it this morning...so glad.. was worried it may continue....Have a wonderful day ladies!!! And take a lil' time out for JUST YOU and pamper yourself!!! love ya'll...jules
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Hi Yearofthehat,
I did TACx8, for 4months, and have neuropathy in my feet, and my lovely Onc. just told me it's very unlikely to get better. I forgot to ask him about the Chemo brain....
Rachel, please keep up the posts, I have to live vicariously, through someones life! That is a beautiful baby growing on your back!
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3 month c/u for tamoxifen blood work was good and everything was normal. Most of the fatigue is risidual from the rads. I am tired today, but that is to be expected, Onc is an hour away and we went out for lunch.
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Rachel - love the pic of you on the eliptical!
Had my gyn check up today. Everything looks OK, so that's good. PAP results in a week or so. Appt with my surgeon tomorrow to check that lump in the other breast=(. Then, on wednesday, a bone density test. Are we having fun yet?!?
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Ladies::: sounds like all good results for ya today..Great!!! like to hear that for everyone...I forgot all about my pap results...I was kinda worried since it had been 10 yrs. since last one...for an RN...I know thats pretty darn stupid... but hey...we get busy,,,right??? I guess I'll get something in the mail.. just keep keeping it off my mind...enough to worry about otherwise...
Everyone needs to sleep well and get ready for the new day...no night sweats or aching joints for anyone tonight!!! love to all.......jules.
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Jules, don't feel bad. I'm also an RN, and prior to BC diagnosis, I had 2 mammos in my entire life. One sometime around age 40 and one last year at age 47 which found my BC. And paps, I couldn't even remember when the last had been. Maybe also around the time of that first mammo? And many of my RN coworkers had similar sentiments, like "Oh, it's been a while, I really should go for a mammo this year."
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Rgiuff::: so right ...those in the medical field are the worst patients...pretty much a known fact....maybe after all the pts. we deal with and see sadness, we are afraid to hear anything wrong with us...when we do, we try to dx and have a plan for our tx...This is just how I feel about......not practicing right now, but I miss taking care of people...I am SUCH A CAREGIVER!!When anyone in my family gets sick..oh jeeez do they get taken care of....but me....??? just don't seem to happen...maybe b/c I am one not to ask for anything....Go get your pap girl...take care of yourself.....another thing we do, give out good advice we don't follow ourselves...you prob know what I mean...have a good night...sleep well...check in ltr.........jules
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Hey everyone back from from my exchange surgery "holiday"... so much to read. Year of the Hat hope everything is going well with the little white pill. Rachel you sure can tell a tale ... and such a cute litte boy.
I've been popping painkillers, antibiotics and of course my favourite.. tamoxy. Felt pretty whoozy but no more painkillers from tonite. Have some beautiful new Foobs though. Can't believe how much better they look than my "monster" expanders. I'm even shy to show people because they look so real, I've really taken ownership of them.
have a great nite everybody
Helena
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Helena - congratulations! I am so glad you like your foobs. That's encouraging. I wish you comfort and coziness while you recover. I believe I'll have revision in September or October. I still have frankenboobs so I can't wait! I'll have my next pap then too.
I can't tell I'm taking Tamoxifen yet. I might be slightly more emotional which I kind of like. I drift off into fantasy land.
I hope everyone is enjoying life today.
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Hi all - very good reading in all of your posts. I just got my prescription today, but will start after rads are done 7/13. Was given all the SE's to watch for and do's and don'ts. I was also given the Effexer prescription for my chemo induced "hot flashes", will start that tonight. Have a follow-up appt. with onc. week of 8/16. Plan to visit this board often, so thanks for all the info.
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Hello everyone,
When I saw my onc. a couple of weeks ago, he repeated that he'd like me to stay on Tamoxifen for six more months, and then switch to an AI... So I did some figuring, and I have about 172 more Tamoxifen pills!! Not that I'm counting..... yep, I'm counting!!
I guess when I switch, I'll have to hop off this crazy Tamoxi-train!! It's been nice riding with you!
Harley
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YearoftheHat - bet you can't wait till the revision - sorry you are still having problems, you just want all the surgery over and done with, I certainly did - just nipples and tatoos to go. Just great you are having no se's and lucky you being in fantasy land, if only.
Welcome PattiB - it sounds like you have had a long trip and still some - hopefully the tamoxi train will be smooth running for you. I'm doing great so far (besides a few hiccups) almost 4 months down the track. Thinking of you during your rads.
Harley - I am so jealous - 172 and counting - whooohooo.
Everyone is talking about getting a pap - I guess I should book myself in, haven't had one for over a year - and of course they are just so much fun - may as well get some poking and prodding down the other end. Something else to look forward to.
Have a wonderful wonderful Thursday everyone.
smooth hugs
Helena
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Helena,
Thanks! Only... I"m kind of nervous about taking an AI...
I was really worried about getting any of those 'reproductive' cancers, and I told my onc... He said that the only way to know if I am at high risk for ovarian ca. would be to have that BRCA test. So, I did... I just got the results... the report says "No mutation found" ... YIPPEE!! So, I guess I feel a little better about NOT having a hyst...
Take care, everyone!!
Harley
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Great news Harley!!
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Mary- my name screw up on FB is an accident. Then I got stuck with it to keep my old messages. But I do watch what I say there. And YAY (again) for good check up!
Year of the Hat- I totally agree on all counts
All told, I would MUCH rather be where i am now than where's he's at. Ewww! Thanks YAY Harley!
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Hey this from another thread I am on... mama wants to send her son to see Joe Perry (Steve?) from Aerosmith:
holtbolt wrote:Thank you Coonie... there is only one person competing at this point and he's constantly 20 votes ahead... with 2 days left to vote.. it's very close... so please anyone who has a second... will you please vote?help me bring joy to this boy! Thank you so much! http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576
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Rachel, I voted too. Just click on the link and click on the thumbs up! I wish I could go!
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