Bottle o Tamoxifen
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Definitely, I think we should blame the nits on SFBC. And my farting.
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LOLOL....Helena and Rachel..........I'm laughing hysterically at you two!!! I can't imagine how you felt Helena. My daughter had head lice when she was younger. It took forever to get rid of them because everytime I would send her back to school........she would get them again. FINALLY........I called the school and told them if she came home with them again..........I was calling the Health Dept on them. For MONTHS........I would look at everyone's head in a checkout line. I was the pro lice spotter. No one else got them.......I was happy....lol
I'll tell ya what will kill them.......and it's much better than the lice shampoo. Use Mayonaise. You sleep in it with a cap over your head......works like a charm. You still will have to use the lice comb and comb the nits from your hair tho........
Nite girls........I'm up waaaaaay too late........thanks Tamox!!!!!
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I haven't decided yet whether or not I will take Tamox. I'm waiting on my CYP2D6 test to see if I am even a good metabolizer. If I'm not, I won't take it. If I am, I don't know if I will or I won't. But for all of you already on Tamox, please research the CYP2D6 inhibitors. There are many drugs which inhibit your ability to metabolize Tamox. So, if you are a good metabolizer, you could be minimizing the effect of your Tamox by the drugs you take. You may want to ask your pharmacist for an up to date list. I have found mention on several sites during my research of Tamox that list drugs like Benadryl, Cymbalta, Prozac, Darvon, Paxil and others I can't remember as Inhibitors of CYP2D6.
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Helena and Rachel- Thank you so much for making me laugh. I was sitting here thinking about the "real" world and repeating anything on here. It's like Mommy talk while potty training. It just isn't nearly as funny if you haven't been through it. Thank God for this thread because it is so nice to find the humor in SFBC. I'm envisioning a bald stand up comedian and a crowd full of survivors laughing their butts off.
I'm off to my one year follow up from radiation...check skin...yes have skin...see you next year. Such an effective use of my day.
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hi all you Tamoxifen ladies:
I started Tamoxifen in November . I don't know was it the breast cancer, surgery, chemo or Tamoxifen but I feel like I went from a young lady of 54 to an old lady of 55. Prior to chemo I was still getting my periods so must of had lots of estrogen circulation now I feel very dried up all over and I am having a lot of joint and muscle problems. In July I landed in the ER for a painful swollen right knee and calf. A blood clot and bone mets (thank God) was ruled out. The ER doctor thought it was Phlebitis. Told me to follow up with my family doc. He told me to take advil 600mg three times a day around the clock to decrease any inflammation. After 3 weeks I went to an orthopedic MD and got a MRI which just showed some arthritis and just wanted to inject a steroid into my knee. I said no thanks but did ask for a prescription for physical therapy.For 2 weeks now I been going to a wonderful physical therapy place (who more throughly examined my knee than the 3 Mds) and PT think a long with my arthritis I have some muscle inflammation on the inner aspect of my knee where 3 muscles meet. So they are doing stretching and massage to it to get rid of the inflammation. They also have started me on knee rehab exercises which are helping. Yesterday they had me do an exercise that works on my balance which I failed. (I got peripheral neuropathy from the Taxotere) so PT is also going to work on my balance. I know the joint problems are not going to go away but the physical therapy is helping. Agnes
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DC Mom- my philosophy is Laughter is the Key to Everything. And why not laugh? It's really good for us, releases endorphins, and it can't hurt.! As much as my RAD ONC did all that great stuff, she sucks dog doo in terms of followup. Good for you they are going to check your skin!
Luna- Welcome! Remember your OncotypeDX score of 0 is dependent on you taking Tamox for 5 years. This group has done a TON of research on the issues you mentioned, we know about the problems with SSRIs and Tamox, it just means you switch to Effexor. The CYP26 is not conclusive, and it'd be a shame for anyone to throw away a chance at 0 recurrence rate without even trying Tamoxifen. You have done so much to prevent a recurrence, this last part is the easy part. Stick around...
Agnes- oh its so special being a "woman of a certain age" isn't it? Can't tell what's "normal", what's chemo, what's cancer, what's Tamoxifen... but whatever it is, you are doing the right thing FIGHTING BACK! Win back your health. We're here for ya
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Rachel--yes my onc did say she didn't think chem would be that effective for me based on the grade 1 and high ER+ but I had her do the test (which I think is still pretty new) to make sure. She said chemo works best on fast-growing cells which mine weren't. I felt better after getting the oncotype although I was just over the borderline between low and intermediate. (I think an 18?) And for the oncotype test, they also use a tumor sample....
The one thing too on the BRCA test to think about is that in some states there aren't laws against insurance co's being able to not cover you based on the results. A friend's sister who had it last year decided not to get the test b/c of that--she lives in Utah which is one of the non-protected states. Don't even get me started on the SF insurance co's!!
Helena--I can't believe you have to deal with that!!! Although the "squeaky & scratchy" was very funny... hope it's all over soon!!
Rachel--thanks for posting the positive studies on tamox--you wouldn't believe the posts I've read elsewhere that say it's evil and ignore all the studies, etc etc (some people really don't trust the medical community)...I know it's not perfect but they have long-term studies showing that it really helps lower recurrence... so down the hatch!
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Helena, congrats on the new nipples, sorry about that other thing, LOL!
So, I had my 1st TV ultrasound yesterday since starting tamox in November, and it showed borderline normal uterine lining and multiple follicles on my normal sized ovaries. The follicles were too small to be considered cysts. Since I haven't had a period since March, and won't see my Gyn until October 7th., I'm trying to figure out what this means. I do work in Labor & Delivery, so when I go back to work tomorrow, I will pick the doctor's brains about what's going on, but until then, has anybody else had this and know exactly what it could mean? Do all these follicles mean that the tamoxifen is hyperstimulating my ovaries or is this normal in someone who may be menopausal? Does elevated FSH during perimenopause do this to the ovaries until they stop working completely or does it mean something bad is going on? I will ask my Gyn to test my FSH and estrogen levels on my visit Oct. 7th.
I also have not had any bad hot flashes for several weeks now, just little brief periods of feeling a little warm, night sweats have completely stopped. And all my joint and muscle aches have suddenly disappeared this past week. I have been doing yoga for awhile and taking supplements that could have all helped with this.
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Rachel - Excellent point about the CYP2d6 test being intended for post menopausal women- I totally missed that. My doctor insisted I should take it and I'm pre-menopausal. I haven't taken it yet (testing in December) and I'll admit, I will be a little reluctant to increase my tamox dosage b/c of the post menopausal qualifier - I don't want to strain my liver any more than necessary. He and I are going to talk about it. This sucks.
Luna - another great point. I just ran through the list of tamox inhibitors.
Hello Agnes17 - I'm glad physical therapy is easing some of your discomfort - it really does help. I injured my shoulder a couple of years ago and three orthopedic surgeons said I was "fine" and "of course you play tennis", which was absurd, b/c I could barely lift my arm. I finally went to a orthopedic specialty hospital in NYC and the doctor immediately recommended physical therapy- it worked wonders. Within a couple of months I felt fantastic. One step at a time and Rachel is right, you're doing the right thing.
AllieM22 - we are lucky that the Dems and Reps agree that insurance company preexisting condition provisions - discriminating against people based on pre-existing conditions, denying coverage, charging higher premiums and/or refusing to cover a particular medical condition - should be abolished. I'm not sure about the rest of the bill, but all evidence suggest these measures will be passed in the foreseeable future.
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Ladies, if you test negative on the BCRA test, do your daughters still need to be tested? And thanks for all the great info on the CYP2D6 test!! I'm interested to see my results. I am going to wait a month to get my blood work done, since my appt. isn't until Nov. 12th.
Helena, WTF??? Hope you get rid of the little buggers quick!! My DD had them once, and then the other one got them...what a nightmare! Mayonnaise, huh Genia? very interesting! And how sweet of Rachel to still want to sit next to you on the train! You 2 are just priceless!! LOVE IT!! haha
Oh soooo I read somewhere that Tums or antacids reduce Tamox's effects? I need to look for that again...I have prescription strength pepcid AC, but stopped taking all that stuff when I read that article. hmmm
Rachel - I too am one of those Laughter is the Best Medicine people or peepul!! Gotta do it!
Allie, unbelievable about the laws of certain states regarding the BCRA test results! I had no idea!! And I agree with you, I too have read some other posts elsewhere about the medical community not knowing this or that...I just stopped reading them, I started getting too annoyed and I don't have time for negativity, especially when I'm sweetie pie happy faced all the darn time!! LOL
Rose, shoot....follicles?? ask around at work...Rachel, any findings on this stuff?? Weird about all your side fx disappearing this past week...
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Helena, my ds had lice two times when he was in grade school. What a hassel! He played with the little girl down the street and they kept on reinfecting each other. I was finally able to coordinate treatment and washing bedding etc, etc, with his friends mother. That solved the problem - along with a warning not to put on any one else's hat and to keep away from any one he noticed scratching their head.
Agnes, I am about your age and I know what you mean about feeling like an old lady. In my case, I can't blame anything on chemo, but I can't decide what is a se of tamoxifen and what is a normal part of aging. I had a hip replacement just before I was diagnosed with breast cancer and all I can say is I love my physical therapist.
Rachel, I've never found slugs on my kale. There is a store on my way to work that sells hot food to go, so I picked up lunch: brown rice, black beans, sauteed veggies (zucchini, onions, and red peppers, and finally kale sauteed with garlic. I love the store (New Leaf for those who live in my area). I may never have to cook again!!
kooskiesmom, there are alternatives to tamoxifen. One my onc mentioned to me was lupron (to suppress ovarian function) and an ai. I look forward to hearing what your onc wants to do.
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Rose--I am not the expert on events happening *down there* however I have read (and experienced) tamoxifen stimulating the uterus and ovaries. From what I understand, tamox decreases the effects of estrogen on breast tissue but can INCREASE the effect elsewhere--on bones (which is why it is strengthening for bones as opposed to AIs), ovaries, uterus, etc. I have a cyst on one ovary since starting tamox although I hope it is shrinking--they are watching it. Also--and this speaks to the fact that flaxseeds really are high in plant estrogens--my ovaries (both) are much less sensitive since I stopped eating flaxseeds (which I had on my cereal every morning). Found this completely by accident--and it could be circumstantial--but it was a dramatic difference. I go in in Nov to have another pelvic US but I suspect that the cyst will be smaller (I am hoping for "gone" of course). So my ovaries were already over-stimulated by the tamox and the flaxseeds just put them over the edge...
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Oh and I saw this good report today--about tamox significantly reducing the risk of contralateral (meaning I think, the opposite boob) in both pre- and post-meno women...if the link doesn't work, let me know and I will cut and paste the summary.
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Kari, you asked if your daughters shold be tested for BRCA results. I think they should talk to a genetic counselor. The gene can be passed down through either parent and if there is a history of bc on their father's side, the test may still be a good idea.
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One more thing on the study--it's interesting that they had ER- women in the study too--they didn't mention if there was a higher % of women who had new tumors that were ER- unfortunately.
Tamoxifen (TAM) therapy has long been recognized as an effective way to reduce the incidence of contralateral breast cancer. This randomized trial with long follow-up adds to our knowledge in 2 ways. First, it demonstrates that TAM works in this respect at least as well in premenopausal as in postmenopausal women, and the effect is seen after only 2 years of treatment. This trial also raises the possibility that younger women with ER-negative breast cancer may benefit from TAM in terms of a lower incidence of contralateral breast cancer.
Kari--Agree with Lisa-e. Only if there is evidence of family history on their father's side will they likely recommend the test for them if you are negative...
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KARI - When I was tested, my genetic counselor, she said that the BRCA gene is passed down directly (there was a fancier name for it) and that if you are negative, your daughters cannot have inherited the gene from you. However, it is remotely possible that they could have inherited it from their father if he had it. But not from you. So no need to test.
I am finishing rads in early Oct and will start Tamox then. To be honest, I am extremely nervous about it. The emotional side effects are really scary to me. The thought of being depressed, anxious, emotional, weepy - all that stuff is totally different from how I usually am and it is an upsetting thought. Am I worrying too much?
Just finished chemo and now rads and did great. Am very healthy-lifestyle oriented, if that helps. Also my chemo nurse said that I have to be very careful about gaining weight - that some women put on 20 lbs like THAT (and she snapped her fingers). I had just lost about 40 lbs pre dx, and have put on about 10 which I am working on losing. so the thought of gaining is equally upsetting. BUT when the pills came, the literature said weight LOSS was a side effect, not gain. So what's up?Thanks for any feedback.
Amy
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quick question: how long does a hot flash last? minutes? hours?
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Rachel - like about 1-2 mintues!! for met at least
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Interesting stuff....So Allie, I had bought some ground flaxseed and was putting it on my cereal too, but I haven't eaten any in over a month, something was telling me not too....very interesting about you stopping flaxseed and the ovaries being less sensitive. I looked at that link and it tested Stage 2 women, wonder if it is positive results also for Stage 3'ers like me? I will say yes it is!! My BS told me that there was like a 1% chance of getting SFBC in the good boob...I don't want to be in that 1% bracket!!
So there has to be evidence of SFBC on the Father's side?? wow I didn't realize that. My ex is dead, but I did see his mom last month and knew their history, no SFBC there, those mexican ladies live long lives!!! Must be all the beer they drink! LOL!! maybe I didn't drink enough beer! I'm totally kidding...
Amylstrong - love your Avatar! look at you all cheery!! Its funny, all the things you are fearful from on Tamox are what I experienced during chemo, I was a mess!! On Tamox I have been just the opposite, kinda like the 'old' me, not depressed, positive, back to exercising, etc. Join some of us over on the Motivation thread too, under Fitness and Getting Back into Shape. We keep each other motivated to exercise, etc. to reduce the risks of recurrence.
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Quick post b4 I get ready for work. Thank you for all your kind posts about the head lice. We used hair conditioner last nite on everyone (not DH as he has a no. 2 cut) so hopefully no more scratching, mind you just thinking about it is enough for me!!!! Lisa-e yep my DD's have been told no hat swapping, no hugging and no sleep overs for a while. Mayonnaise - mmm - interesting.
Over here in Oz we can be refused life insurance if we are tested positive for BRCA1&2. The majority of SFBC isn't hereditary so since we all have it I think our DDs should be vigilant regardless of the BRCA status. One of my BC friends here her grandmother, mother and sister died of SFBC but she tested negative, but she still has SFBC.
Welcome to all the newbies.
Amy - I had some issues with emotional side fx when I started but I can promise you they have gone, I do still get some anxiety but things like that existed b4 SFBC anyway. Give it a try, you can always stop and even restart (like I did) if it is too debilitating. Look at your name.. you can do it.. we are here ... also I haven't put any weight on at all and neither have most of my friends ... redistributed it yes, because of all the stupid surgeries I have had and a change of lifestyle, but not because of tam.
Rose - I am having my TV U/s in October. Sorry to hear about the things that have showed up on yours, hopefully they are minor and can just be monitored. My periods have decided to stop so it will be interesting to see if this causes any problems. It never ends does it.
DCMom - absolutely!!! This SFBC is serious and not funny but how great is it that we can laugh at ourselves. There's been some hysterical stuff here which really sometimes just makes my day. Love it.
Got to go... love you all and have a great day/nite.
Helena
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Rachel, the length of hot flashes vary, but I've never had one that lsted for hours. Mine usually seem to last for 5 or 10 minutes.
Amy, the BRCA gene can be passed down from the paternal side, so if there is a history of bc on that side of the family, Kari's daughters may want to consider testing.
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Kari, I just had this discussion about the BRCA last week with one of the docs at work and she put the question to the OB genetic counselor. The answer I got was daughters (I have 3) don't have to be tested. But she did recommend that I might want to get tested. Only if I were to test positive, would my daughters then have to get the test. Since none of my doctors ever recommended genetic testing, I'm trying to decide how necessary this is. I have no family history of breast or ovarian cancer and my ancestry is not high risk. The only factor is that I was diagnosed fairly young (age 47).
Amy, I gained about 7 lbs. in the first few months of tamoxifen, but upped my exercise intensity and frequency a bit for several weeks and the pounds quickly came back off, and it's been over 6 months now that I've remained at the same weight. And I do sometimes slack off just a bit on the exercise and sometimes cheat a little bit on my otherwise healthy anti cancer diet. I had some weepiness in the beginning months of tamoxifen, but was also going through an emotionally stressing time then too, so not sure if it was the tamox or life events causing the weepiness. It was a little worse than my normal PMS down in the dumps feelings that I used to get.
Allie, do you actually feel a difference in your ovaries since you stopped eating flaxseed? And you also mentioned that it stimulated your uterus as well. Was your lining thickened? I eat flaxseed as well, but lately not as much as I used to. I now use fish oil for similar reasons and I increase the flaxseed when the digestive tract gets a little sluggish.
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I lost 12 pounds during the three months I took Tamoxifen. My doctor told me it could be the Tamoxifen or it could be that I had just come off of chemo drug Carboplatin and that drug caused a loss of appetite, though I never gained or lost weight during chemo. So I am inclined to think it was the Tamoxifen. I ended up with severe hives from Tamoxifen so went off. Then I read this article which was very eye opening and now I am glad I am no longer taking it. This link gives the pages regarding Tamoxifen from the book What Your Doctor May Not Tell You About Breast Cancer. Additionally, scroll down in the article to page 204. It dispells the controversary over the 1% uterine cancer risk quote that you have read about and tells the real truth about the 253% more endotetrial cancers in the "relative risk" terms. That s a lot more than just incidental. One side note if you haven't started Tamoxifen yet, it can cause a daily sticky green snotty vaginal discharge. I wished somebody had told me about that. Now you know. It took more than 2 weeks for this discharge to go away after I stopped the drug. I guess each of us personally has to weigh which risks and benefits we are willing to live with and which studies we choose to follow, the European ones or the American ones.0
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Helena - Working in an elementary school. Whenever we hear of a case of lice, we all start itching. With my short PFC hair, I feel like there is less chance of getting them. Which brings me to.....
Hair comments from the school kiddies.
1st grade girl: "Did you redecorate your hair???"
4th grade boy: "every year a new hairdo, what's up with that!!!!"
A positive for me losing my hair is that I hadn't changed me hairstyle in years. I ditched the wig after 3 days of wearing it. So many people have told me to keep my hair short and straight. This new hair is sooooo soft, I can't stop touching it. DH ruffles it up all the time too. This week it is finally long enough to start curling - so now I can try all new styles with curly hair instead of my poker straight limp lifeless hair that I had before. The possibilities are endless.
Rachel - My hairdresser that I have used for 20 years picked me up, took me to her shop on a Sunday when I had my meltdown over the hair falling out. She shaved my head and styled my wig, (I only stopped wearing it because it wasn't comfortable), Then put make=up on me. I still cried for several days, but my hairdresser is my hero. I stopped in this past weekend to have her tell me when I should be able to get my first PFC haircut. Scheduled it for late October. As of now I wash and don't even need to use a comb or brush, just towel dry and scrunch (since the curl started). Anyway, I am lovin it!!
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Rose, thanks for the comments!! very interesting!
Helena, refused life insurance for testing BCRA positive? That is INSANE!
Patti - priceless words from the kids!! LOVE IT! And isn't it fun that you can play with the new style!! What a wonderful hairdresser!!
Ok, time to pack it up here at work! Headed to DDs, she is making me dinner!
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Went to the Gyno. today, and had what they call an Endometrial sampling....OMG. what a nice description...SAMPLING! It was so painful, cramps like I sure as hell didn't expect. It took forever...Then she followed that with an ultrasound. She said, looking at the screen, "And there's your bladder, would you like to take a break"...Shit yeah, the sampling scared the piss out me.
But the good news, is I didn't get a bad vibe, close to a good vibe, as she handed me a pad, saying I might bleed...NO YOU DON'T SAY. Then she said that I've been through a lot. Really, I know she was being compassionate, but I just looked at her.
My head itches now.
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Helena, I was just reading about the huge dust storm in Sydney. Hope all is well, in your part of OZ.
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And a good evening to all....kookiesmom--I'm sorry to hear about your problem with the Tamoxifen. Let us know how your recovery is going and what is your next step in hormonal therapy....donnamariem--I've been on Tamox about 6 weeks now, and I am able to function pretty well. I'm just realizing that I actually have more of what I call "slow burns" rather than what I have thought of as "hot flashes" in the past. I will notice a gradual increase in temp, to a very intense degree, then sweating, etc., then an easing back of the temp until I get back to my new normal of warmer than I was in the past. I do have some problems with fatigue but I also am still recovering from chemo, so it's hard to know how much effect is from Tamox....Helena--Squeaky and scratchy? You sound pitiful! And your dignity wounded? Don't ask how much more one person can take!!....Agnes--And speaking of dignity. Oh, I can so relate to the indignities created by a ramped up aging process. I do believe that cancer treatment really ramps up that process. Most of my life I have looked younger than my age, and I have had a real zest for life; now I think I look my age (UGH) and I have to blow hard just to keep the spark burning sometimes!
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Quickies again...
Allie YAY- yeah we have VERY similar SFBC, my Oncotype was 17. I wonder what we both did wrong to end up here?
and I agree ten thousand per cent about the weird campaign against Tamox... like as if we need more fear, right? I absolutely question authority and challenge traditional medicine, like as if I had to say that to this crowd, you know it... but I now know sooooooo many women on Tamox, plus all the studies and decades of use, and you just can't get around one simple truth: try it and see.
meanwhile, as quick as I can... after sleeping off all the Xanax from Monday all of Tuesday, I had kid alone today, which started with finding cat pee all over the bed in my son's room (not the crib) through many layers into the mattress, fun fun fun... my computer is too full, wont run, so I had to move stuff to external drives and back up all over the place, there was another nursery school open house to attend tonight so I was sneaking in a bath and a nap when I got a text from my colorist that Chelev was at the salon- I FORGOT- so I woke up the kid and strapped him on and ran down to the salon to meet her - she rocks and btw I haven't seen it but there are pics of the secret BC org handshake with the 2 gals on the hair thread, and chelev and I got another today, so you NoCal beeeetches better rock it- then got home and changed and fed the kid, put him to bed my friend came over to babysit (he can only be good for like if there is a fire, he can't change a diaper or anything) and ran out to this open house that BEGAN at 8pm (what?) and its CRAZY FREAKING HOT AND HUMID HERE and I get to this thing and there's like 100 parents crammed into a not-airconditioned room and the evening's schedule says have these speeches from the staff first and then, at 915 yes, 915PM they would BEGIN the lecture on admissions... well aside from how hot I was and how my friend din't sign up to babysit for 4 hours, I have my first day in court tomorrow trying to get my apartment back from the a*holes who have kept me out since the fire in 2003... so I left at 845pm (saw some other parents sneaking out as well). Madness I tell you, madness!!!!
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oh and Leggy - well that STINKS!!!! You know I am going to rant about hwo they should have told you what the procedure was going to be and how you could prepare. At least it does sound like they really checked the hell out of you. Very very sorry for your discomfort, you brave girl
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