Bottle 'o Tamoxifen

irish47

Ainm,

Sounds like your symptoms are from the rads, can last quite some time or so I have read. 

Hannahbearsmom

cs7777:   Yes, I am in a study and it dictates that the dose of tamox be increased to 20mg twice a day for intermediate and poor metabolizers. After about 4 months (apparently how long it takes for blood levels to become constant) they recheck and see if the endoxifen level has gone up. The study lasts for 10 months.

TCK

Ainm

Hi Ladies, Thanks for your replies.

Cs - I thought about allergies but I don't have any other allergy symptoms and this started before the pollen season started.

Loretta & Irish47 - would a cough start so long after finishing rads? I didn't think of rads - well it was at the back of my mind but I thought I was too far out from rads for it to be that. (Irish47 nice to meet another Irish person here!).

I'm due an onc visit next week so I guess I should say it to him - I just hate mentioning it in case it's absolutely nothing and he'll think I'm a right hypochondriac.

Thanks for your help and ideas.

YramAL

Ainm-I just saw my rads doctor for the first time since I finished treatment, and he said that a cough can be one of the side effects of radiation that can show up far into the future.  A severe cough can be a symptom of radiation pnuemonitis and is often confused with pnuemonia until xrays are taken. It doesn't sound like your cough is that bad, though. I hope it gets better.

Mary 

Ainm

Thanks Mary - no it's not bad just annoying!!!

Maybe it will clear up soon and it might have absolutley nothing to do with past tx!!

tory

iHEARTu - I did the same thing! I picked up my prescription in the morning on Tuesday but couldn't bring myself to take it until Wednesday.

Can anyone comment on how soon SEs start showing up?

MaryNY

Hi tory: I've been taking Tamoxifen now for almost five weeks. The only SE I've noticed are hot flashes. They had already been triggered by chemo. While on chemo, they were really bad and would wake me up a number of times a night. By the time I started Tam, they were tapering off. I find them much milder on the Tamoxifen. They mostly bother me at night, not so much during the day.

Someone did mention that it takes a number of weeks for the Tamoxifen level to build up in the body, so maybe the SEs don't kick in fully until then. I'll have to wait and see.

Chevyboy

Morning girls!  I've been taking Tamoxifen for over 4 months now, & the side effects aren't there yet... But I think it has a lot to do with my age....I'm WAY over menopause, & all that girl stuff, so I think that helps.  Also, I didn't have chemo.....I notice a few things different, but nothing to make me want to quit. 

And I have my prescription with Wal-mart....It costs $18 for 3 months.  Maybe that will help!  Jeannette

KorynH

I started last Sunday. Mothers Day. By this morning, Saturday, I had my first hot flash (not nearly as bad as when I finished chemo last summer, though). The girls in the Natural Girls thread say they take Progesterone cream along with their Tamoxifen and this cuts down on the hot flashes. Anybody here do that too?

tory

Thanks for the input, ladies. I was fortunate enough to not have to have chemo, so this will be my first experience with hot flashes. I think I'll head over to the Natural Girls & see what they've tried.

Happy Saturday!

precioustime

AINM:  Yes you can develop a cough long after RADS--  

Well- I've been on Tamoxifen for almost 2 months and went last week for my yearly Gyn visit.  Everything looks good!  The Gynecologist told me that even though I had FSH levels done which showed menopausal and haven't had a period since Chemo started (9 months) ago...  that she has had other ladies that have started their period after 1-2 years of not having one!  She also said that if I did start to bleed abnormally that they will want to do a BIOPSY!!!  OK -- I've had enough BIOPSIES for a lifetime!!  Anyway -- My hopes are that my period stays GONE...Having hot flashes along with a period --wow.

I have also had pain in my lower right side for about 1 month now-- had blood in my urine and told it was probably a UTI-- given antibiotics.  After completion of antibiotics blood was gone from my urine but still had dull pain in my lower right side-- I was sent for an unltrasound and everything was fine except after ultrasound-- was told to empty my bladder-- I did and when I came back for them to do an internal look at my ovaries-- they noticed that my bladder wasn't completely emptied!  Anyway- I am going now to see a Urologist next week to see what's going on-- Ever since Chemo...  when I use the restroom, I can not stop the urine flow like I did in the past -- HAS anyone else experienced this?  Could it be loss of estrogen from my body-- muscle weakness?

Sorry to go on and on--

Loretta

Luna5

KorynH   Re  "Why don't they block progesterone?"

If you research progesterone, you will find many who think one reason for getting BC and/or recurrences is the absense of progesterone which is what tells bad cells to die...cell death...apoptosis.

If you read Fairy49's posts, there is a lot of info on this on the progesterone thread and on natural girls.  Some report that their oncologists don't know why progesterone positive is even reported and that they have no idea what it's involvement in BC is...although everyone knows the big relationship estrogen has. 

Just google progesterone and breast cancer and you will find plenty to tire your brain.  I had almost no progesterone which means my hormones were way out of balance...hence the supplementing with natural bio-identical progesterone  whilst also lowering exposure to estrogens in meats, plastics, lotions, shampoos and conditioners, etc. etc.

Estrogen dominance is the big problem.  Progesterone counteracts it.  If you have little to no progesterone and lots of estradiol (the bad estrogen)...well you will see.  Just research it and you will see.

cs7777

I just want to note that the point of the PR measurement is that it may be helpful to decide which hormonal treatment might be best for you.  While the data are not completely clear cut, there are some data that support the position that ER+/PR+ (including the PR, not just the ER)  tumors are most amenable to treatment with hormonal therapy; that ER+/PR+ tumors are very amenable to tamoxifen specifically, and that ER+/PR- tumors are better treated with an aromatase inhibitor.  Years ago there was some belief that ER-/PR+ might still be amenable to hormonal treatment but I'm not sure wehre that one's gone.  .  The bottom line is that the use for the PR measurement is as a biomarker to help guide treatment--even though no one quite knows what actual involvement progesterone and the progesterone receptor have in breast cancer itself, it can be a marker for a treatment effect and helps provide a broader picture, sort of like the other measurements like proliferation%, vascular involvement, etc.

MaryNY

cs7777: I love your posts, so informative and clearly stated. And you get bonus points for treating data as a plural.

Chevyboy

WHAT????????  (just kidding)    So does this mean I have something else to worry about if it is working or not?   I just want to think the Tamoxifen is my last God-send treatment to help me not worry anymore!   I did google the progesterone & cancer....but it hurt my brain.  So I'm going to ask the Radiologist when I go see her Tuesday....She's the same one that told me the Cyp2d6 test or whatever it is, really wouldn't tell me much!  Then there is the Oncologist, who also said the same thing.    Well anyway, my latest side-effect is more of a nuisance  than anything I think.  So I bought some Metamucil, & Pepto-bismol to help with THIS one.   Do any of you gals have this problem?  At least I'm not plugged-up....I mean this week anyway.  Later Gators......

cs7777

Hi all, Well this is off topic but I'm so excited I just have to share that I have my exchange surgery tomorrow morning!!!!!  Not sure when I'll get back on the boards, but I expect everyone here to sort out all the tamox issues by the time I'm back so that we can just all sit back , relax, and have a long, tall, something and not worry about any of it anymore!   

Hope everyone had a good weekend and I'll talk to y'all again soon!

CS

brendaw

CS,

I hope you have a smooth recovery. Take it easy this week.

Loretta:  One of the side effects that I have noticed since starting Tamoxifen is incontinence and when I went to the doctor, she said it was from the loss of estrogen.  She just told me to do the kegal exercises everyday.

Brenda 

susiered

CS777 I already wished you luck on EC, but in case you didn't see.....I am thinking of you and praying all goes well and you have a smooth recovery. I am so excited for you. I can't wait until it's my turn.Lol..we will try to have things worked out for you.If we don't we can still have that tall cold glass of something.

Big ((((((hugs)))))

Susan 

June2268

Hello ladies I too was wondering how long before the SE begin.  I am on the middle of week 3 and nothing yet, well I shouldn't say nothing I have extreme insomnia since day 1 and headaches on and off but other than that I feel I can live with all this at the moment I am waiting for the dreaded hot flashes to happen and nothing yet.....until my husband tells me I am more bitchy than normal will I then do something about the lack of sleep.  I have started walking in the early mornings and still I lie wide awake at night praying for sleep.......my doc told me that insomnia was not a SE and to take 25mg of benedryl which I have done only a few times......I hate having to medicate myself just for sleep.......any of you ladies having insomnia and headaches?

CatbirdC

June2268~~

I'm almost positive Benadryl is a no no with Tamoxifen ????

Unless that's too small a dose to make a difference.

Bonnie

Chevyboy

Morning June!  Try taking Melatonin!  It is more of a natural sleep aid....and it is working for me!  I have been taking it for about 2 weeks, & it helps!  

And CS....just thinking of you and your exchange!  I'm not sure what it is, but I assume it has something to do with the implant?  I have "talked' to a gal that had both breasts removed, & she is now getting her nipples tattooed!  She is very happy with how her new boobs look!   I congratulate you gals!  You just make me proud! 

So I'm just sittin' here thinkin' about all of us getting together & having that little "something" to drink!   Let me know when the party has started!   Jeannette

JustmeAlicia

CS ~ good luck with your exchange today !!!    Hope you get nice new foobies. 

Marie K ~ nice to see you here.  LOOKING good ~ woo HOO.

Love all of the information here.  I also heard from someone no no to benadryl.  Called my oncologist and they said it was ok.  I had to take it for allergies this season. 

I am 1/2 way through my second month of tamoxifen and so far the worst thing is the hot flashes in the middle of the night.  I wake up sweating!  Then a few minutes later I am freezing.  Other than that I am ok.  I have my 3 month oncologist check up next week, I will be asking about those metabolizer tests.  I take 20 mgs 1x a day.  Still no period since my last chemo in February.  Hope everyone has a great week Tamoxibabes!

Alicia

KorynH

Alicia-

I take Tamox. 10 mg twice a day, 12 hours apart. I am wondering if you split your doses up maybe you would have fewer or less severe hot flashing? I use Natural progesterone cream twice a day and notice that the hot flahses are, well, hardly noticable at all anymore on it! Whereas before, like you, I was waking up in a sweat. Got the cream at health food store. My mom's been using it for 8 years after she went into menopause and swears by it. My oncologist is fine with it and says it actually may help ward off bc. Who knew? The brand I use is Progesta-care. You can find it online too.

CS-hope you feel well after surgery today and that life will be much more comfortable without the TEs in. Rest up and sending healing thoughts your way! I had a little more feeling on the periphery of my foob after the exchange, but still has very little feeling at all. It's been 10 months since my exchange. My PS says this is what it will feel like for life. Sigh. It is really pretty much numb all the way to my back. I've bumped into the open lower cabinet corner door in my kitchen before and didn't even feel a thing! Scary thought.

Sparrow

 Just a Susie drive-by today.  I'm busy taking care of last-minute things before my trip to CA.

CS, best of luck to you!  

Have a great Monday, Tamoxibabes! 

Irishmom

Hi gals  - this is week 2 for me on the Tamoxifen - I had really bad insomnia the first few nights - now it fall asleep pretty good but once the flashing starts I can't go back - its can be anywhere from 4 -5 o'clock and then I'm awake until bedtime.  I'm taking 20 mg at 830 am - wondering if taking it at night would help - any suggestions???  I see the oncologist 6/24 for my follow - I'm writing my questions done.  I have not heard anything about staying away from Benedryl but I;m wondering has anyone heard to stay away from citrus fruits - I hope its not so, I love having an orange in the evening.  Hope all is doing well and staying well.  Kathy

sue_blue

Is anyone else having leg cramps? If so, have you found a solution. I've tried tonic water, and it does work to some extent. I thought iron pills worked, but now I'm not so sure.

KorynH

sue_blue- OMG! Yes! I started having leg cramps at night last week but I didn't even THINK about the Tamoxifen being a cause! Now I am really wondering!? What can be done about THAT!? My feet also cramp up at the end of the day. Geez! Are we doomed or what?

JustmeAlicia

Koryn ~ I will ask my oncologist if I can use that progesterone cream.  I will try anything to lessen these hot flashes.  I am exhausted all day from the broken sleep every night. 

Leg cramps, I had one in the middle of the night the other night !!!  Had me screaming in pain.  I figured it was low potassium and had a banana the next day.  Hmm...wonder if it was the tamox. 

angicpa

CS  - I hope your surgery went well.

Re: tamoxifen & benadryl - I've read many sites that say NOT to take the two together.

After reading the last few posts I googled tamoxifen & citrus fruits. Most sites said to avoid supplements containing tangeretin, some said avoid "excessive" amounts of citrus fruits.

Then just to add confusion, mbhs.org, baptist health system website had this to say " Like tamoxifen, soy isoflavones have both estrogen-like and anti-estrogen actions. Test-tube and animal studies suggest that relatively low doses of soy isoflavones interfere with the ability of tamoxifen to inhibit breast cancer growth, but high doses of isoflavones augment the effectiveness of tamoxifen." 

Aaargh!  I've been avoiding soy.  I really don't want those studies to show the same effect in humans.  It's almost impossible to completely avoid soy and it now drives me nuts to think what little bit I can't help getting will interfere.  

Thanks to various ladies posting their cost of tamoxifen I checked the price at a couple of pharmacies and found I was paying more at Kroger than I would at RiteAid or CVS, but less than I would at Costco (which was a surprise).

Anonymous

I took tamox for 5 years--never heard you couldn't take benadryl--only thing I was told to avoid was grapefruit and grapefruit juice--they decrease the efficacy of tamox. I take melatonin for trouble sleeping--really works well for me. (3 mg)

anne