MIDDLE-AGED WOMEN 40-60ish
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Interestingly, my med onc DID have the tamox utilization test done on me - I'm an "extensive metabolizer" - but my insurance wasn't very happy about that and there is disagreement among oncs as to the validity of the results.
Meanwhile, I was told that Benadryl was just fine to take, but it wasn't - you are wise to check the lists of drugs that might interfere with your uptake of Tamoxifen. If you're going to take dangerous chemicals, don't impede their impact, I always say. This site has a pretty comprehensive list. I shared it with my med onc's PA, and she was nonplussed...
It is important to avoid references to the internet. Skip that part and refer to tips we've given you that you need to discuss in this way: "a friend of mine who had breast cancer said..."
Does your med onc want you to take 10 mg twice a day? I'm taking 20 mg at bedtime. The first week or so it made me sleepy - I think that was because I'd worked myself into a froth about taking it, and once I started it the pressure was off and I relaxed...I think I was expecting some major change, like the growth of a leathery tail, and when that didn't happen, I was relieved. Then my side effects kicked in about a couple of weeks out, and most of them are gone now except for periodic flashes. So make sure you give your body a little time to adapt if you start to think you're having problems... This is a GREAT time of year to start - it's easier to keep the bedroom cool, and most of my flashes were at night...
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elimar, maybe you could wrap it in a mint and it would help it go down. Then it would seem more like a treat than a med.
nebraskagrandma, Carson is a dandy, it is amazing how much joy they give us. It is so different being a grandma instead of a parent. When I have my grandkids, I can give them all the attention and I don't have to worry if the house, laundry or bills get paid while I have them. Carson just thinks I am a big kid and I don't think he really thinks of me as a grownup. That is sort of nice.
Hope everyone has a great weekend.
Juannelle
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I am looking forward to grandkids. Al I have right now is grand-puppies and as of 12 days ago, great-grand-puppies.
I feel so out of place, not getting to to chime in on Tamox. Oh well, you gals make it sound pretty fun anyway.
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Movie review of the weekend.
Just home from seeing "2012" and we would both give it two thumbs WAY UP.
Very thought provoking, actually. Didn't expect it to be so 'philosophical.'
VERY VERY edge of your seat -- action packed.... from beginning to end.
We do like action movies as a rule, but this one is pretty top of the genre. IMO
Hope everyone has a great weekend.
xx00xx00xx00xx
I, too, am THRILLED to have a corner of this Forum that has remained civil, warm, welcoming and has both 'personal experience' and a sense of humor.
Let's hear it for us!! Da Middies!!
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Meece, Wait til moonbuddy sees your puppies! I love puppy smell. (Front end!!!!)
Faith, Thought I might like to see "2012" also, cause it's always entertaining to watch our beloved landmarks of the world getting busted up in one way or another. Like J. Cusack too. Now you come touting an actual philosophical plotline? I'm sold. (I do confess to being out of the habit of going to theaters, now that we've adopted the Netflix lifestyle, but this one sounds worth the trip.)
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The puppies are sooo cute. I was on tamoxifen for over two years ( I think,sort of forget how long now), but in my case they used it as treatment rather than preventative and it really did work for me, shrunk the tumors 50%. They could not have used it as treatment if I had used it as preventative, but I often wondered if I had done it after my mastectomy if it would have kept me from ever getting to Stage lV. It does no good to look back, but sometimes I wonder.
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Oh Meece,
they are so darn cute !!
faith,
Thanks for the movie review, we are planning on seeing it this week-end............
well ...............this is all I can say about Tamox. My oncol surgeon wasn't even going to run an ER/PR test. I asked him to, then when it came back ER+ he said he wasn't concerned about me taking Tamox. I could if I wanted but he didn't think it would make enough difference in my % of reoccurance to put up with the side effects. I tried it for about 5 weeks and had such hot flashes, it was awful. I'm not just talking about some regular run of the mill hot flashes, I've had them for years. I was out to dinner one night, just sitting there and sweat literally rolled down my face like I was standing in a shower. So I stopped it, I don't know what is right or wrong............and I sure don't want to discourage any of my sisters from giving it a try we're all different and I think anything we can do to help our outcome is worth a try.
Blessings to all my "Middle" friends,
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I'm seeing 2012 with some freinds next week, and now I'm looking forward to it even more!
I think part of the uniqueness of being a "middle" is teh trickiness of the whole menopause/tamoxifen/AI thing. NebraskaGrandma, your onc not wanting to run the ER/PR test leaves me feeling uncomfortable. ER/PR and Her2 testing has been considered routine standard of care for many years now and are the very basis of treatment decisions. The onc's not wanting to run the test makes me wonder if he/she is up to date with bc management. Feel free to tell me to butt out if I'm being intrusive.
Meece--the puppies are ADORABLE! Thanks so much for sharing!
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Native,
My Oncology Surgeon is very up to date he is the Medical director of the Breast Center. There is an entire team that reviews each BC case. Being a nurse in the Health system gives me an advantage in knowing reputations of different Doc's
I can understand why you would think that, but what separates me from most is that I was stage 0 no lumps or bumps. DCIS which would not have even been picked up had it not been a digital mamm. I had clusters of micro calcifications, they have learned that micro calcifications tend to cluster around "abnormal cells". They biopsy anyone that has this, 4 out of 5 biopsy come back ok but that 5th (me) show very early DCIS. My % is such that he doesn't feel taking Tamox will increase % compared to SE. Of course I am being followed closely for the next 5 years.
Blessings all,
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.....I had no lumps or bumps and they called mine microcalcifications....they looked like buckshot when you saw them in the mammogram. I was not even a stage at the time. They biopsied 19 lymph nodes, all of them negative. The talked about tamox, but it was still being tested and I forget the exact percentage, but it was low, maybe 5 % difference if I did it as preventative that it would not recurr. Well, obviously it did recurr, since I am now Stage IV. So who knows it fhe tamox would have kept this from happening. I did not have chemo after my mastectomy and think that would have definitely been done today if I presented the exact same profile. I remember how happy I was when the onco said taking tamox would not make that much difference and he thought I would be fine without it and how happy I was. The same way when he told me no chemo was necessary. The up side to this is that because I did not have tamox as preventative, we were able to use it as treatment and it was a treatment that worked for me and was much kinder than chemo. I was 48 at the time, but still having periods as regular as clockwork....two months into chemo and it was instant menopause. I had the hot flashes and night sweats big time. I used to have to leave a patient at work to wipe my face off . I could feel it coming from the waist up like a big wave of heat and it would move up until I was dripping under my bangs. I could see my gloves filling up with water and when I would excuse myself from my patient I would always stop by the dentist's door and show my co-worker my gloves and would fan my face off because she was doing the same thing with her lupus. I was always a cold person, when everyone else was hot, I would be comfortable and was naive enough to think I would like hot flashes....had no idea what they were like. I also gained weight, but I think that was due to the fact I went into menopause and not because of the tamoxifen itself. I get hot flashes again now with the aromasin and all I can describe it as is what I think they used to call prickly heat....cannot stand to have material touching me, and it is almost like a stinging burning sensation ...prickly. When I was doing chemo I was cold all the time. Pics of me in TX when my girlfriends at MD ANderson show me in a sweater and them in short sleeves. I am not pro or con for tamox as preventative.....each case is different. I went with the onco's recommendation and did not do it. They tested my receptors and found I was both ER, PR + and this was back in 90. I had a friend who stayed on tamox for longer than the recommended five years because she felt safer being on it and also she had absolutely no SEs with it.
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Marybe, you just busrst my balloon. I make a joke that I lok forward to hot flashes so I will be on the same temperature level as most of the other people in my life. I went in to me pre-op on Monday and the room where they draw you blood was so cold my veins constricted terribly. The phlebo tried two different locations, blew out one vein, and ended up having to heat my hand, and have another nurse hold a flashlight so they could locate my blue veins. I wasn't given the option of a port during chemo and my veins are very damaged on my "good arm". With all the nodes they took, I don't dare let anyone touch the other arm. I asked if they could use my ankle and they said they have to have a doctor's order for that. I could really have used a hot flash about then.
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Meece, Can't you get a port? I love my port and am so fortunate that it is still working with no problems after 10 years. I put off getting it because I just didn't want one. I think it was the fact that then I would have physical evidence that I had cancer. I was much thinner then and it was very pronounced ( still sticks out, but not like it did when I first got it) and when I showed it to one of my friends, he said It looks like a doorbell. I found that to be very funny because it actually does. Why is it they always keep it so cold in hospitals and in the treatment room?
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Hi Elimar....wow..I'm impressed how this board has taken off. Thanks for inviting me from the rads board.
I'm chiming in on tamox. I just explained to my med onc at my 3 mos. out from chemo visit how I think my tamox hot flashes are less intense than chemo flashes. My onc explained chemo put me into menopause and the tamox is carrying it forward. So...bottom line my hot flashes have improved from chemo through rads. I was very controversial on the rads boards, as I started my tamox before rads. Both my med onc and my rads onc said go for it. All the recent studies indicated that it did not effect the outcome of the rads. Although clearly, many oncs do not embrace the recent studies. I felt sort of like a black sheep...but I did it for me. My med onc said why wait three months before starting another systemic treatment from chemo...it made sense to me. Bottom line...tamox has been a piece of cake for me. No neg. se's...other than I've gained weight. But that is more likely do to lack of will power during rads.
Betsy
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Since I am through with TX I guess it might be difficult to convince a dr. to put a port in now.
If it would do any good, I would have a drink of port before the next blood draw. Just being silly, I don't mean to offend you, Marybe. The few women I personally knwo who have had them, had them removed after chemo. The blood draw station at the hospital was actually conntected to the pre-op area, which is directly beside the OR. I guess the cold might have something to do with a) The electronic/computer equipment like to be cold
b) Bacteria tends to like a warm humid area rather than cold
I am having sort of panicky feelings remembering the OR and knowing that I will be going back in there on Thursday. I can remember the turns in the hall as they whell you in, and the smells. I can't figure out why I am feeling this way this time. Maybe my stress accounts for my warped sense of humor in my first paragraph.
When I mentioned to the pre-op nurse that I was not happy with it being so cold, she assured me they have warmed blankets. Now that is a happy memory, blankets fresh out of the warmer...and lots of them.
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Vodka, cranberry juice and a lime slice!!! Then a good red wine. How soon can I have a drink?? I gave it all up when I had my first kemo, July 24th. Favorite food....mashed potatoes & gravey. Looking forward to feeling like going out to have that drink. I am living alone in TX, my 3 kids, 3 sisters, and friends are all in MI. I work 40 hrs a week so don't feel much like getting out just yet.
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Hey, Betsy! So good to see you over here from your Sept. Rads. thread. Welcome! I like the new avatar pic. even tho' you had to lose your statue girlfriends.
All my doctors are "old school" and so mine was Tamox. about four weeks after rads. I think that was more so I would not get double-teamed with side effects. I have seen recent studies that there is not a big difference in starting the Tamox. with or after rads. However, the chemo has to be done first cause chemo and rads are a definite no-no. They all agree on that.
Meece, I must have missed something... I read about the pre-OP, so what OP are you having? (Sorry for not paying attention if it's somewhere on another page.) Yeah, smells definitely trigger memories. I think we are all traumatized by our surgeries even if we get through it well at the time. I think your nose knows!
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Welcome denise7318! You'll have to tell us about your B/C, and how many chemos down, how many to go? Any radiation planned? When you get to radiation, red wine actually has some benefits. I liked to compliment my wine with a handful of Cheetos, but mashed potatoes and gravy is acceptable if that's how you roll. 0
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Oddly enough I have no desire to drink since chemo. I used to love wine...dry white...but now it not only doesn't taste good to me, it burns going down so I just say No thank you, when they take drink orders and stick to water. I am a cheap date.
Hello, Denise. This is a good forum.
I guess I did not realize you were done with treatments, Meece.
Like your hair, Betsy.
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Welcome Betsy and Denise,
One more post about Tamox, there were a couple of issues recently about it. There was concern about patients that used Tamox for 5 years or more they were something like 4 times more likely to have a reoccurance of BC that was ER- which was more aggressive to occur in the other breast. My Daughter-in-law swears this is what happened with her Mom.
The other thing was that it was felt that patients that were on anti-depressants, (which many gyn's started giving for hot flashes when the Estrogen concerns popped up) Tamox was unable to work because most anti-depressants interfer with Tamox.
I guess the bottom line is we are all similar but different. Each of us has to do what we feel is best for our situation. I only hope for the very best for each and everyone of you. I hope that your trip through this all is as painless as possible. Positive and hopeful thoughts for all my friends.
Blessings all,
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I WANT THE PUPS !!!!!
Marian
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How about this one Moonbuddy?
He's my favorite
Elimar, I am going in for my second reconstructive srgery. I waited 5 years for the first one, now #2, but as bad as I want it "right", I don't think I want any more.
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Hey! This thread fell off my "Favorites" some how! Did anyone miss me? If it hadn't popped up in Active Topics I would have forgotten about y'all!
I had no chemo, no rads and no Tamox or other hormone. I am now experiencing a couple of masses that have started my testing cycle all over again, same time as last year....sigh.
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Barbe, we tend to travel some of te same paths, so I have to admit I didn't miss you here, because you are in other places I go. Sometimes I don't even know where I am...that could be a linging effect of chemo brain. I never quite got my memory back to snuff.
I pray everything works out well for you in the testing. Not a fun thing to experience especially around the holiday season.
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(((((((((((((((Barbe)))))))))))))))))
Yes. You were missed.
xx00xx00xx
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Barbe,
glad you're back here ! Sorry about more tests but will be keeping you in my prayers as you go through this again.
Meece,
How could you possibly have a favorite ? They are so darn cute !!
Here's to a peaceful Sunday all..........................
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Nebraskagrandma,
Well, my son asked me which one he could "wrap up and send over" and I picked that one, even though I cannot have a dog. They are hoping to find all five good homes by the time they are ready to leave mommy.
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Oooh, some people didn't sleep in today. It was a rare treat for me, or was I in my first Tamoxifen coma?
I woke up funnier (not funny ha-ha, I mean funny hee-hee) than ever and managed to malign the iconic delicacy of "Texas Toast" on another thread. (I don't think it's too harsh to define it as "a double-wide piece of bread," do you?) I will have to get a ruling from Kleenex on that one, but I fear no wrath since she is a transplant.
Meece, we've seen the momma dog, but was the dad a Holstein?
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Sorry to hear a couple of you are entering a new chapter of cancer drama this week. Hope the results are good, guys!
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Elimar, Daddy was a "stud" so I don't know what he looked like.
They aren't all big and fat, when I first saw the pictures I thought the dog had guinea pigs!
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HAHAHAHAHAHA I was thinking the same thing was didn't want to say. 0
