Bottle o Tamoxifen
Comments
-
jo1955-I was told that they are more likely to have synthetic hormones to help with hot flashes, and other things older women experience. It funny how things change from one oncologist to the next.0 -
How are people doing with cognitive issues with Tamoxifen? Mine seem to come and go but the last couple of weeks I have had major brain fog and fatigue issues, which I am totally connecting to Tamoxifen. I am almost ready to ask for a little vacation or a switch to an AI. Hoping it goes away. I was doing pretty good with SE's. Maybe it is the daylight change or something?? Any suggestions?? Going into month 6...0 -
Lenn, not too bad, but now and then I do forget a conversation or something else. I keep saying I have four reasons for fogginess: cancer chaos, hormonal therapy, perimenopause, and I forget the fourth. I'm not being cute--I actually do have four, just not this minute. Maybe it's aging? Just turned 50, which isn't all that old....right? Or radiation?0 -
No RF, 50 is not old at all! I am 68 and was always the go to person for names, dates, stories, clinical info, etc. for my young and old co-workers until I started Tamoxifen. Now when I can readily pull up a name (of persons or things), I am so thankful! And remembering things to do is out of the question! Those thoughts can be gone in a matter of seconds!
What is also operating in a most annoying way, is a real difficulty with concentration. Some days I feel like an eight year old boy with ADD and executive functioning disorder! Doing concrete things with fewer steps (cooking, sewing) is a hell of a lot easier than straight cognitive tasks....even reading for pleasure seems to take forever.....books are piling up by the bedside! I worry that in three years when I can stop the Tammi, age effect will also have double-teamed my brain and I will have to say good-bye forever to any semblance of high cognitive functioning. Hope not! ~Sigh~0 -
Runfree, that made me laugh! I've been forgetful for a while - was wondering if it wasn't the perimenopausal stuff. I've only just started tamox so I can't blame it on that.
Does anyone else have to take it for 10 years? Seems like I mostly see just 5...0 -
SophiaMarie - How long one takes Tamoxifen is really going to depend on the MO. I am postmenopausal and will only take it for 5 years. After that, I am finished with this crap. I have had enough issues with Tamox to last me a lifetime.0 -
My MO just told me yesterday 5 years then re-evaluate. If I go 10 years he's still going to leave me on Tamoxifen as long as I'm doing well on it. I'm 50 and premenopausal.0 -
Lacey, I used to have a good mind too! So sad! I was a great speller and could always remember phone numbers and dates. I am probably not having as much trouble as what you describe, but I have been having trouble with forgotten conversations. Caused a big spat with my husband one day this summer, because he swore he had told me something and I said he didn't. Finally I went to the computer and printed out stuff about all the reasons my brain is foggy (that's when I determined there were four), and highlighted the key sections and gave it to him, and of course I totally WON that spat! Hey, it's gotta be good for something....0 -
RF....smart move! Hahahahaaha....0 -
Runfree, I think I read back a ways that you've been having trouble with itchiness? Me too. I've been on Tamoxifen for about 3.5 months now, and this started maybe 6 weeks ago. It is accentuated when I take a hot bath, and seems to be mainly concentrated on my lower legs - very annoying. Also having significant night sweats, but that's all so far for SE's. I'm taking the Watson brand - how about you?0 -
Very interesting caitlin. I'm taking the Teva brand. My itching started on my radiated skin--in fact, it lasted about 6 weeks after the end of rads--but then it gradually went away. About another 6 weeks after that (around August 1), the itching on my radiated skin started up again, and it was ferocious. Eventually I got some Triamcinolone cream which cleared it up literally overnight. But meanwhile, my lower legs started itching and having what looked like flea bites. After another 6 weeks or so, the spots started to spread upward, to my arms, hips, then back, then stomach. I've been through many theories and meds--prednisone, Triamcinolone cream, Dermasmooth yucky oil, OTC antihistamines (mostly Zyrtec), 5 million OTC anti-itch products, and two courses of Bactrim, which I'm still on. Tested negative for scabies but I've also done two anti-scabies treatments; biopsy showed a rare skin behavior that didn't answer any questions. The Bactrim is helping a lot; these days I don't itch at all and I have no new spots. But I need to get off it at some point, I hope very soon. What have you tried? (Obviously we could do this in a message, but I'm putting it here in case this sounds familiar to anyone else.)0 -
Runfree, my lower leg itching sounds very similar to yours, and it does seem to be trying to spread to my thighs and arms, near the elbows. I experienced something similar about 10 years ago, and was later diagnosed with a blood disorder (essential thrombocythemia - elevated platelet count) and was told that the itching might have been related to that. So, I don't know what to think. All I've tried is Desitin and some left over Biafine (just the over the counter type) from rads. Seems to help temporarily but the rash is still there. I will see if Bactrim makes it go away. On the edge of wondering if I need to go back to MO about it. I also wondered if it could be something as the current soap I'm using or laundry detergent - but Tamoxifen is also a candidate as the cause.0 -
We went through the laundry detergent theory, switched to an all natural one. It made no difference in my case. When I saw my MO in September, she got me into a dermatologist's office that very day, and my prescriptions since then have been from the derm. Do you have spots or a raised rash? I had spots, then later also some pink raised areas that the derm said were just an immune response.0 -
I think mine would be more spots than raised - if not for the fact that I have itched it and it has become raised. My left inner calf is covered pretty much from the ankle to the knee. Skin in that area is very rough to touch. As much as I love baths, may be less irritating if I switch to showers.0 -
Have you tried a cool bath with colloidal oatmeal? A pharmacist told me that stuff is recommended for people with chicken pox, which is some hard-core itching. I found the best bath approach was to get a medium-sized towel and drench it in the lukewarm water (with the colloidal oatmeal mixed in) and then lay it over my legs. Warm or hot baths made the itching MUCH worse. But I mostly take showers anyway.0 -
Hi all,
When you see the Oncologist for your 3 month check ups does she/he run any blood tests on you and what are they for. I was informed today that my MO does not run any blood tests ever. That he goes by what is reported as symptoms. I am thinking with everything out there there has to be blood tests ran to tell what tamo is doing to us?
Also doesn't tamo affect the overies? I told the MO Nurse practioner today and she said I must have been ovulating when I complaincd that my overies had been hurting off and on for a few weeks and then suddenly stopped. I said ovulating for 2 weeks? I know they use Tamo as a drug for women who have a hard time conceiving for a short time dose, so it has to do something with the overies.
HMMM... Dazed and confused as always--- ha0 -
ndgirl...Every 3 months my MO runs CBC blood tests and a metabolic profile, and a yearly FSH... BS runs Vitamin D....0 -
ndgrll - My MO doesn't run any routine blood tests at all, either. He asks about symptoms and said basically if I have any uterine symptoms to discuss it with my gyn. I suppose if she then were to diagnose Tamoxifen as the cause I would then discuss it with him. She runs my yearly blood work, and said because I am pre-menopausal she didn't think any routine things like a trans-vaginal ultrasound to measure uterine thickness were necessary, just that I should report any unusual bleeding.
As for Tamoxifen's effects on the ovaries, I read it can sometimes stimulate ovulation, but that's all I've seen.0 -
I have a CBC and metabolic panel done every 3 months. However, I have a blood disorder (high platelets) so was having the same blood draws every 6 months even before I was diagnosed with breast cancer. MO is ultra-concerned re: platelets now that I'm on Tamoxifen. Not doing any other testing or scans in the absence of symptoms though.0 -
just been told I'm going to be on tamoxifen soon to. I a low % but both my surgeon and my once suggest going on it !! I am 44 and willing to try it but not happy and very worried !! What can I expect ??0 -
This is my 1st chat about this stuff. I'm very nervous And I need advise from my fellow BC sisters!!! I'm on tamox.. I hate it!!! I'm terrified of reacurrance. I don't know if i'm asking the rite ?s to my Onc... I'm starting to not like him very much I feel he don't listen to me and brushes me off when I try to tell him how i feel, buti'm scared to switch Drs at this point!!!!! Please i'm open to any advise!!!0 -
Drinkdiva, you may have to switch doctors. In the short term, I hope you will be able to feel peaceful about Tamoxifen. You can read back on this thread and see some alarming side effects, or you can find a giant list of possible side effects online--but of course nobody gets all of those, and quite a lot of people get none. In my case, I have had none of the side effects I was worried about (weight gain, joint/bone/muscle pain), and the only possible side effects I've had are some "warm-ups" (it wouldn't be fair to call them hot flashes), occasionally depressed appetite (yay!), and a skin condition that might or might not be due to Tamoxifen. That's it. When my skin's good, I feel extremely normal. When did you start taking it? My MO said most side effects seem to appear after around 3 weeks. That calmed me down when I started because somehow I thought I might immediately feel as though my body had been taken over. Also, side effects come and go, then new ones come and they go. Tamoxifen is a great anti-recurrence drug, widely tested over a long period of time. Along with good diet and exercise, it's your best friend in this fight.0 -
ndgrrrl, none of my oncologists do any bloodwork on me either. This seems to be an inconsistent practice among doc's and regions. It was explained to me that in early stage cases like mine there is no benefit to bloodwork, so they don't do it anymore (where it used to be routine for everyone who had had BC). Of course I'd feel better -- maybe more in control -- if I were getting routine bloodwork. My hospital has a team of onc's with great reputations and is affiliated with Harvard Medical School, so I guess I have to trust this new protocol. And it's reassuring to see others here whose doctors are making the same recommendation.0 -
Hi everyone,
Thank you for all your responses. I like Gemini would feel more in control if i was having some tests done. Makes me wonder why I have to take the journey(4 hours round trip) to see a doc every 3 months for basically nothing. If I was having side effects or any weird pain I would go in anyway. I am thinking to myself geeze wouldnt it be too late then, if I was having side effects or weird pain?
Annika, I like you am 44 and was really scared to start Tamo, It took me about 10 days of staring at it on my counter to actually take it. I like Run Free only get "warm ups" mine usually happen at night. So I get night sweats. My NP MO put me on Effexor low dose and that did help out alot as I am not getting them as much.
Drinkdiva, I am like you and on the fence about my MO. He is for a better word- Bizarre and I learned more from reading the medical report( I had my nurse navigator copy them for me) then I did from actually talking to him. I now see his Nurse Practioner who is very young and I can talk to her just fine but she just does not seem to be really up on tamo. She told me she never heard of anyone having sleeping issues with Tamo . I was like umm ok.. Well I certainly do and others on this board seem to be able too.
Good luck Drinkdiva, I know how you feel and hate to think about switching doctors at this point but I may have to as well. My cousin went to a new MO and liked him- He tested her blood for white blood count- He told her tamo can make our counts go I think down? Has anyone heard of this before? I asked my nurse practioner MO and she said it didnt do that. UMMM OK ... Seems to be alot of contradiction between doctors, even at the same cancer center. sheesh.
Happy Saturday everyone,
Its freezing here in the great north... Below 0 -- F this am and supposed to be colder tonight - brrrrrrrrr0 -
I have been on Tamoxifen about a month now and so far pretty good. Some hot flashes at night but I can deal with that. And some nights I have a hard time sleeping, but don't know if it is the Tamoxifen since I don't sleep that well at times. My Oncologist spent over an hour with me at my first visit. They did blood work and she gave me a physical exam...I could tell she was looking for suspicious lumps, etc. I did not expect such a thorough exam. I thought she would ask some questions and just hand over a prescription! She is very highly respected and supposed to be the best in our large city hospital. I don't have to see her for a year unless I have any problems.0 -
I've been on Tamoxifen for almost three years and see my MO every 6 months. At each appt, he does extensive bloodwork as well as a breast exam. At my first gyno appt after starting Tamox, I asked my doctor to do a transvaginal US if for nothing else but to establish a base line. Am I glad I did. I have had multiple uterine issues and finally had to have a hysterectomy. I would advise all the newbies to have their gynos do a transvaginal US if for nothing else but your own piece of mind.
It is amazing how different MOs can be. All it does is make us more confused than we already are. Just something else we don't need.0 -
hmmmm... I saw my mo the day after rads ended. He looked, but didn't touch. And the only bloodwork was to recheck my vit D. I thought he was supposed to be a good one.0 -
Just saw my MO last week. I'm 8 months post exchange. He pulled blood and did a breast exam. I asked him what he looked for with the blood and he said it was to check for tumor markers, whatever that means. He's pretty good about answering my questions if he can. His biggest belief is minimize soy and Vitamin E intake and to maximize fish oil. He also thinks melatonin is good for helping to prevent recurrence. I usually see him every 6 months but this time he told me not to come back for 9 months. Wonder is I should ask him to check my Vitamin D or if that's something he already does....0 -
Any suggestions for my brain fog? I really don't have a lot of side effects on tamoxifen. I did at first but they've pretty much have gone away, along with my memory. I can't remember names, dates, appointments or anything. I swear it's horrible. I can watch a movie and go to tell someone about it and will not be able to even remember the title. My oncologist brushes it off. Along with everything.
And by the way. I have no blood wok or any work what so ever. I get an examine every 4 months and other than that 5 inure appointment they really could care less about me now that my active treatment is over. I guess if and when my cancer returns we will just miraculously know......0 -
Dora, is there any way you could switch to a new MO, one who gives the impression of caring? That's really a long-term relationship and it seems awfully painful to have to put up with an office and doctor who brush you off. Was this the same MO that took you through chemo? Did he/she seem more interested then?
As for your brain fog, I'm just curious--did you have any of it during or following chemo, or only from Tamoxifen? I've definitely read that hormonal therapy can cause brain fog. I know someone who took Ritalin for it, just in small doses I believe. You could maybe talk to a PCP about that, if you have one you like better than your MO, and then the PCP could just check in with the MO.
But my longer-term wish for you, along with no brain fog (and of course no recurrence), is a better MO.0
