Bottle o Tamoxifen
Comments
-
Was reading on a Canadian website this morning about women across Canada having a hard time getting their tamox. And I'm thinking..... would this not be the perfect time to do some research on low dose tamoxifen? Here we have a COUNTRY that can't get enough (not clear if this is worldwide or not) this is the perfect excuse for docs to say, take HALF your dose for the next month until the supply comes back on line. I am no researcher, but could there not be information collected on women who take 1/2 a tab for the duration of the pill strike, and then follow them to see what recurrence rate can (or cannot) be associated with this low dose event? I know there is more to research than this, but you get my drift.
I am ASTONISHED by the non-thinking of doctors who could RIGHTLY say,' there is no evidence whatsoever that you must have 20 mg a day for it to be effective. No. Evidence. So...take half a tab and do not panic.' Because women are panicking. We have been lead to believe we NEED that 20mg a day or cancer will come to claim us. It's terrible. It's almost abusive, really. So many of us have been scared to death that we are hanging every last hope of not dying on that stupid little pill. And it's kind of bullshit. Because , truth number one, you can take 20mg a day like a good little patient and SURPRISE! you can get new cancer or metastatic cancer anyway. It happens ALL THE TIME! So, is swallowing that pill really making you safe? Well, it's stacking the odds in your favour but you're still playing a game of Russian roulette. Your odds may be just as good with 1/2 a tab a day but it seems doctors are not thinking clearly enough to suggest this. And it's cruel. People are freaking out. I don't think they need to. I think they should feel comfortable and safe taking 1/2 a tab for a month or two until this shortage works out. It is terrible the anxiety this is causing. With some creative suggestions from docs, that one month supply you have left could easily be a two month supply. Some docs might be doing this, but not enough. Not by a long shot.
0 -
I just got a 3 month supply last week here in Texas. My prescription is for 2 10 mg pills per day. I wonder if 10 mg pills are any more available in Canada? I'm currently only taking 10 mg / day so good for a while.
0 -
Have seen references to Tamoxifen "shortage" in Canada, UK and Australia. I used quote marks because some of the references stated a person might not be able to get their regular brand ( seems like I get a different manufacturer every three months anyway) or should try another pharmacy. Leads one to wonder where there is a true shortage , which does seem to be the case in Canada and Australia, and where there is some disruption of supply of one brand. I'm due for my 3 month refill in a couple of weeks so will find out how it is in this part of Texas.
Good luck to those who are truly dealing with a shortage. Runor's suggestion is exactly what I was thinking I would do if the need arises.
0 -
No post since Nov 18? What's going on with everyone?
My latest thing is the fat. The fat around the middle. The spare tire. And not only is it super gross looking, but I feel awful too. I just feel...thick. Uncomfortable. It's so odd that I have thought, gee, is this what an enlarged uterus feels like? Is this what ovarian cancer feels like? Or am I just constipated? Constantly constipated. Whatever it is, it is uncomfortable and miserable and while I have never been a thin, slight person, this bulk around the belly can seriously piss off.
Was standing in the bathroom the other night, snipping pills in half with a very fine and very sharp thread snipper by Fiskars, wondering what the state of the tamoxifen crisis was. Have no idea about that. But snipping a pill in half with a thin, sharp scissor works pretty darn good. Try it!0 -
Despite telling my MO's PA that I would give tamoxifen one more try, I don't think I will. That heart rate stuff was awful, and I'm training for a marathon now.I don't want to jeopardize that training by taking something so toxic.
0 -
Hi Ladies, I actually decreased my pill about 6 months ago, only taking every other day. After not having a period for almost 2 years, it appeared yesterday and continues. Has this happened to anyone who decreased their dose? I don't believe I was in natural menopause, but induced by tamoxifen. I was only 50 two years ago when I had my last period. I emailed my gyn to ask her thoughts. She wants me to come see her and have an ultrasound. I think I see another uterine biopsy in my future... ouch - did not like that. Would love to know if anyone experienced the same if you stopped or altered your dose. Thanks.
0 -
Hmmm. I was having regular (horrible!) periods when I was diagnosed. I have not had a single period since I started tamoxifen. On said it would not affect my period. How wrong he was! I am pretty sure that at 53 at diagnosis I had not yet entered menopause as I had no menopausal symptoms and a period that was in full swing and showing no signs of stopping.
Like you, I do not take the full 20mg every day. I take half a tab (10 mg) most days and a full tab twice a week. I have not had any bleeding, spotting, nothing. But my dose, although lower than most, is constant. But even if you take a full tab every other day, the levels of tamoxifen in your system remain fairly high. It's not like those levels drop off dramatically over a 24 hour period (says me who is not a doctor).
I think you should also alert your oncologist to this event. If I suddenly started having a period again I would throw myself in front of a train! No more periods was the ONLY good thing out of this whole shitty experience. BUt I would be very alarmed if I started bleeding now. I hope it passes and the ultra sound reveals all is normal and no biopsy is required.
0 -
As per usual, agree w/ runor--get that checked out to make sure it is indeed your body's reaction to tamoxifen and nothing more.
0 -
Thanks Runor and Ej3. I was diagnosed at 47 and it took 3 years for period to stop. The fact that it returned after not doing so for 2 years does freak me out a bit and possibly want to jump in front of a train too, lol. Actually, I am approaching 5 years on this damn pill. At my last visit with MO, she was suggesting that I switch over to an AI shortly and told me to think about it until I see her in May. I do not feel inclined to do so. Will keep you posted on my GYN appointments in a couple weeks. Enjoy the day.
0 -
Well, if you are still having periods (again) then you cannot go to an AI, you have to be fully past cycles/in menopause for AI.
0 -
Although I find the hot flashes rather tiresome, I was interested to find an article which says they are a sign the treatment is working well.
""Hot flashes are a good sign for women with breast cancer." Did you read that right? If you're living with hot flashes, you know that the sensation is not as pleasant as you may have once pictured it. One woman who described hot flashes as "having her own private summer" must have forgotten about the heaps of laundry that go with these periodic drenchings. Yet we are learning that hot flashes aren't always bad. In fact, they may be a silver lining, predicting that your breast cancer treatment is working or that you are at lower risk than if you weren't having hot flashes with these medications."0 -
I don't find that hot flashes are a good sign, a good sign of what? Decreased estrogen, I still got breast cancer anyway. Here is a quote I found online about hot flashes:
'The exact cause of hot flashes is unknown. They may be caused by decreased estrogen or even a change in other hormone levels. During a hot flash, the part of your brain that controls body temperature is affected.'
Runor, yes the middle is growing on me as well, hate it. I am so obsessed with my weight, that what the scale says determines what I eat and how hard I walk, not that it flattens the gut any, but just minimally, and I will take that!
So my hair has been falling out a lot for a good year now. I need advise, I really don't want a wig, I hate anything that touches my head, I rarely wear hats. When I have gone to the salon, I get headaches when they wash my hair, especially putting pressure on the temples. I have tried the color powder stuff, I'm sure you all know what I am talking about, and quit, it is too much work and obvious that you do it. I even tried batiste dry shampoo for brunettes, and really didn't like how it turned out. I am losing hair evenly though. Any thoughts, anyone wearing a wig? And where did you go to get one. Is it fake hair or did you go real hair? I would be afraid of a clip, since I don't have much I would be concerned it would fall out.TIA!!
0 -
Hi All -Worry The Pooh - hate to be the bearer of bad news - but I never started Tamoxifen because I have SEVERE Hot Flashes - debilitating to the point I have panic attacks. I have them all day long, along with night sweats that require changing bedding. I have a Dr appt to see about a nerve block in a few weeks called (SGB) (Google it under Mayo clinic). If the article is true that Hot Flashes are a sign that Hormone Therapy is working - then I'm good to go without taking Tamoxifen.
0 -
Time to whine (which is different than time for wine). This tamoxifen..I really do think it's responsible for some miseries that I am experiencing lately. Miseries that have crept up slowly, so you don't notice them. But then they reach a point where ignoring them isn't possible. Like this awkward, clunky, painful body thing. I used to get out of bed. Just...get out of bed. Now? Now I peel open an eye and judge how far away the edge of the bed is. Can I slither out? Do I have to make a roll to get closer? I move a leg slowly and with caution lest I trigger some spastic and unwarranted leg cramp that flings me, staggering and screaming, onto the floor. But getting out of bed now is pain in the shoulders, pain in the elbow joints, pain in the back. It's like I'm a zombie rising from the grave. I should have been a dancer in the Micheal Jackson Thriller video, all jerky and limbs falling off. Sure, I've gained weight (mostly this grotesque Jaba The Hut gut) but this weight gain cannot account for the inability to simply rise from my bed like I did two years ago. I cannot believe that my physical abilities have been so eroded by age in the last two years.
No. It's not age. It's tamoxifen. And lately my inability to function is REALLY picking my ass.
And then someone says to me, "Why don't you go off it and replace it with medical marijuana?" Because, as much as being constantly stoned might be a better mental place to be, marijuana does nothing, NOTHING, to help keep me alive! Marijuana does nothing to block the estrogen that feeds my 100% estrogen and 100% progesterone fueled cancer. Marijuana might make it so I don't care if I get mets. But right now, I stagger through this damn drug because it is my best bet to make it 5 years without a recurrence. Take marijuana. For fuck sake. (feeling really grumpy)
0 -
Runor I feel your frustration. My focus is my hair loss. I've lost 20 lbs after much effort and concentration but if I keep shedding like this I'm gonna be bald by the fall. I'm seriously considering throwing in the towel while I still have hair on my head. My eye lashes and brows never came back so I've become adept at drawing in the brows (so much so I got a compliment the other day) but in can't pencil in the hair in the head. What a shite situation to be in. We are at risk and suffer the consequences or feel like better but at 'less risk'. Grrrrr0
-
Molliefish, this hair thing! My hair has become a household hazard. It's in all our food. I try to stir and cook at arm's length otherwise I'm dropping hair in the soup. I announce at the start of every meal that if someone finds a hair, just pick it out, it's mine, I'm clean. It's on all my clothes. All over my sheets. Fills the lint trap in the dryer. The headrests in all the trucks are coated in my hair. The plumbing has taken a serious hit. I make little pipe cleaner curlicues to drop over the drains to collect the hair. Otherwise a wad of hair the size of a goat builds up in the drain until the drain doesn't drain anymore. The bathroom floor...I gave up trying to keep it clean. Hair is EVERYWHERE. And then there's the whole trying to look decent while you have male pattern baldness going on, a forehead that gets bigger and bigger.
I will be really mad, REALLY MAD, if when I finally go off this damn drug, having stuck it out for 5 years, and get a recurrence in year six. Just my luck. There is no good choice here it seems. At least not an easy one. And I have all this on HALF the prescribed dose. Blah.
0 -
Anyone out there finished 5 years/10 years on Tamoxifen? Did your hair stop thinning/grow back? Just wondering if this side effect reverses itself after treatment.
0 -
Runor and I sure as heck hope so. Oy vAy with the hair thing.! I have 11 months to go if I Stand for it that long but I can't see it. The benefit with all my other tx wasn't that great. I am of course like every one else. 'What if'? What if I never checked on that blessed lump in the first place.... I feel like I'm living on borrowed time. But then again, aren't we all???? Blessings to all....xoxox0
-
Just confirmed that I am done with tamoxifen after 18 months. I became post-menopausal during tamoxifen treatment, but then had uterine bleeding. A biopsy said no cancer, but am now discussing a hysterectomy and moving to an AI. Onward!
0 -
Wow runor you and I sound a lot alike. There are days that are good and then out of no where, BAM, you're down. Unexplained pain out of no where, oh wait, no it is the tamoxifen. I am on year two on the T, can't wait to see what it'll be like later down the road. I try to stay upbeat, but some days it just doesn't work out that way. I'm also a bit antsy/anxious. Xanax to the rescue!! Plus I have dogs, they help.
Hair everywhere including inside my shirts and pants. I wear mine long, I refuse to go short and refuse a wig. My head is so sensitive than ANYTHING that comes in contact with it, hurts. I get headaches wearing hats, so I imagine I would get headaches if I wore a wig. I wear mine hair back and pin it with 2 bobby pins and strategically place each hair strand so you don't see my scalp. I used to color my scalp using those color sprays and just gave up, too much work. I just decided to own the thinness. I had at one time about 25 bottles of shampoo trying to figure out which was good. I just use Aveeno. Tried Nioxin and made my head even more sensitive, I couldn't put the bobby pins in at all. Nothing I have tried reduced the amount of hair loss, so now owning that too. One thing, my hair is not totally grey, I still have brown hair at 65, yay.
0 -
Oh, the ups and downs of Tamoxifen!! I'm starting a month off of it in the hope I can better distinguish what is Tamoxifen and what is aging. Lately it has been the brain fog, lassitude, fatigue combination that has been really getting me down.
Have not been losing as much hair since taking Biotin and using a Biotin shampoo. Lomlin, I also decided to just own my balding spots, particularly after looking around in a restaurant one day and noticing several people of all ages with about as much thinning as I have. Had hoped Biotin might help my nails but no go on that so far.
0 -
I did try biotin too, both the pills and the shampoo, they didn't work, like you, am owning it. I, too, looked around in the grocery store and the athletic club and see the same.
I get heavily fatigued when I excert myself too much, for instance, shoveling snow. The next day I felt like a truck ran over me. I would like to stop Tamoxifen to see what is the SE from the pill and aging. I think it is both, the Tamoxifen just puts us in advance mode for aging. I had brain fog as well, but that comes and goes, mostly goes. I force myself to stay focused and let this pill take over me.
And boy do I drink a lot of water!! This pill is making me dehydrated! Another SE. My oconoligist says to drink 64 ounces a day.
0 -
I’m starting tamoxifen...is there a best/better time of day to start? Any immediate side effects like dizziness etc I should be concerned about/pay attention to
0 -
2FUN---I found mornings best because I took it with my other vitamins and that way I wouldn't forget. The most important thing I discovered is that Tamoxifen can be very dehydrating so drink lots of water....and I do mean lots! I spent about a year dealing with nausea and dizziness till someone pointed out how much it can dehydrate you. Once i upped my water those SEs went away. Otherwise you can just see if you get any other SEs and come back for advice. Hope you have none!!
0 -
I take mine at night, not because it's better, but that's when I take my blood pressure pill so I group all my pills, so I don't forget. Because I'd forget my own head if it wasn't screwed on! One of the first side effects I noticed was whacked out dreams. I have no idea if they were anxiety related or tamoxifen related. But I'd wake up from some utterly bizarre and disturbing dream and think, what the hell was that ?! Luckily that passed after a few weeks. Also, yes to the water. Constipation was and continues to be a SE I struggle with. Water should help some in this department.
0 -
Post menopausal women have an
easier time i understand ( i cant
take letrozole)-
I started 20mg in june 2019 at
nite- no symptoms yet- touch wood0 -
Just refilled my Tamoxifen prescription (Feb. 2020) and was given 2x10mg instead of 1x20mg daily, because of the Tamoxifen shortage, which appears to be over everywhere but Ontario.
Only a few days into the switch, just like when I went from the Calgary version of Novaldex D to the very bitter tasting version I get here from Shoppers, I've got a number side-effects back from the minor differences between drugs.
Just reached my 7th year on Tamoxifen, and just gotta keep going and pushing through this. Can't wait for the weekend so I can get the extra rest to manage better.
0 -
thanks all for your answers. I’ve had all the side effects from all the AIs,so here’s hoping there are none with tamoxifen
0 -
Hello Bcat34,
I’m also in Ottawa Ontario and I had opposite issue. Pharmacy said they could not get 10mg dose. So I’ve had to cut 20mg pills in half. I originally started in Dec 2019 on 20mg and had severe hip pain and 12-13 hot flashes a day after only being on for 2 weeks. I had some additional tests to rule out metastatic disease in bones and after all clear my oncologist said let’s start with 10 and then see what happens in six weeks. So far on 10mg(2 weeks) only very minor hot flashes a da if any. I still have hip pain but oncologist said Not tamoxifen as it didn’t go away the month I was off it.
0 -
Hello runor, I agree with you! I know I will only take 10mg of the tamoxifen. I have done a lot of research like you. The status quo is 20mg.
It seems the hole process has been pretty much status quo.........
I do not like the fact that they stick us all on the same 20mg from an OLD study. I would not be able to tolerate ANY side affects other than hot flashes and since I already have hot flashes that will be nothing new for me.
I go in for my Lumpectomy on monday the 10th and hopefully I will get clear margins and move on to my 3 weeks radiation and on to my 10mg of tamoxifen. I am so ready to move on.
I have found this site so helpful, its my support group. thanks ladies!
0
