Bottle 'o Tamoxifen

FastWalker

BBwithBC45 I'm with you - a blood clot, stroke, etc., scares the stuffing out of me. I also have migraines with auras, which further increases my risk of a blood clot. I read this on medhelp.org regarding migraines:

"i am 53 and had breast cancer with a lumpectomy and radiation to follow. i was put on tamoxifen also. i had a history of migraines, not very severe though. i was on tamoxifen for 6 months. my migraines increased daily and i had a stroke. 3 days later i had massive dvt blood clots in both legs and was in the hospital for 6 weeks. i was taken off the tamoxifen immediately when i had the stroke and clots as this is a side effect. my blood dr also did some genetic factors on the blood and found out i had the gene-variant prothombin or factor 8 which means i am predisposed to clotting. i would have never known this if this test was not done. the tamoxifen tipped it off. i should have never been on the tamoxifen. i am on coumadin for the last 9 months now.. i never regain full strength in my legs. i have to wear jobst stocking for the compression. the clots were so massive and deep into the veins that i had valve damage to my leg veins. they put an iv cava filter into my groin area which remains as to catch any clots from going to my lungs. so far so good since i have been off the tamoxifen. i kept telling my oncologist while i was on tamoxifen that head felt like it was going to explode. there are many class action suits going on with tamoxifen. did you read the usa paper dated july 27,28,29? there are articles concerning this dangerous drug. my girlfriend was on tamoxifen for 1 year and had clots in her arms. she was taken off of it also."

Makes you feel like you are darned if you do and darned if you don't, doesn't it?! Do you think fish oil would be of any benefit to you? It is a natural blood thinner. (Ginger, turmeric, garlic, and vitamin E are also natural blood thinners, but I wonder how potent they may be . . . )

BBwithBC45

Oh boy, now you are really scaring me FastWalker. I get infrequent migraines with auras, too. If they get more frequent, I'll have a talk with the MO.

I'll have to ask him about fish oil too.

stage1

fastWalker, can I ask you....what is the aura like? Wondering if I am experiencing this....

BreatheDeep

Hi FastWalker, to answer your question I did not have Chemo, but I did have 7 weeks of radiation following my lumpectomy. I took my first Tamo last night and was up all night long, the stress of taking it is so hard too. I couldn't sleep, have severe RLS, and woke up after a couple hours feeling like crap. I am VERY SERIOUSLY looking into natural alternatives regarding diet, exercise, emotional balance, etc. I have read so much conflicting information about not only tamoxifen but breast caner in general that it makes decision making almost impossible. My intuitive sense is that this stuff is not good for me, but the doctors push SO hard and literally tell me my life is in my hands if I don't take it. But it also is know n to cause other cancer, so what the heck!

FastWalker

BBwithBC45: Sorry I scared you! . . . I used to get very frequent severe migraines that sometimes would last nearly 2 weeks at a time. They have gotten a lot better thankfully (have no idea why!) . . . One thing that was recommended to me is to take your medication at the first sign of a migraine (like an aura). This may abort it altogether - or at least reduce the severity. (I used to wait until the migraines were really bad until I took something because I hate taking pills.)

stage1: Everybody's aura is a little different. For me, I get spinning lights that resemble the ball that drops in Times Square on New Year's Eve. It usually starts off small in the center of my vision. Then the ball of light gets bigger and bigger until my field of vision is almost completely obstructed. Auras are bilateral - which means they occur in both of your eyes. (This is important because this rules out a retinal tear.) It usually lasts about 20 minutes, then a really bad pounding headache follows. (You can also get a migraine without an aura, BTW.)

FastWalker

BreatheDeep: I completely understand. I worked myself up so badly the first time I took Tamoxifen (on Friday 9/4) that I was shaking like a leaf. Radiation and surgery only treat the breast for a local recurrence. They do not kill any microscopic cells that may be elsewhere. I'm also looking into diet and exercise, but at this point, as only a supplement to Tamoxifen. (Not instead of.) What was your Oncotype score? Mine was 12, which is a good low score. But, I have one positive lymph node. . . I think you made a wise decision to begin Tamoxifen. Hang in there. I hear it gets better.

Professor50

I strongly encourage everyone to give this a good try. Even with low oncotype scores (mine was a 5): Those scores and the recurrence estimates they indicate assume you are taking something to curb estrogen (i.e., tamoxifen). This drug cuts the 10 year risk of distal recurrence in half. That's why MOs are so intent on it. Plus, from what I've seen (and folks I've talked to) many, many women tolerate tamoxifen very well. Keep in mind that the great swath of women who have had no problem with tamoxifen are very unlikely to post on message boards about it. I guess what I'm saying is give this drug (and yourself) a chance. You never know.

CidneyI

Proffesor50 - you just described what I am going through! So far, I am 12 lbs up, all of my clothes are too tight. I no longer look in my closet to see what I FEEL like wearing, its now a matter of what fits the most comfortable. Most of the time I have to wear my pants, shorts or skirts unbuttoned or zipped down a little. I just bought a bunch of new shorts this past May and now most of them no longer fit. I am very frustrated - especially when my MIL told me this weekend I look good with a little meat on my bones. I think that was her nice way of telling me she has noticed my weight gain.

Astarte

Yeah, I hope so too FastWalker! My onc said that I can't ever go back to the way I was (almost 400 pounds, not that I'd want to be that heavy ever), that my heart could not handle it. So I just need to be extra careful and make sure it doesn't creep back up on me and stay away from too much beer.

I just read someone's note about brain fogginess. That's a SE I can do without for sure. Already have enough hot flashes from the zoladex. How common are the joint aches and pains everyone? I already have stage IV OA.

I just called my pharmacy and my rx is ready. So I take my first dose tonight. I'm going to try taking it at night at first and see how it goes. I have insomnia too, so I'll report if it gives me issues.

chipmunk57

Don't hate me, but I lost 10 lbs my first 3 months on Tamox. Just nauseous and no appetite whatsoever. I had to force myself to eat on a schedule, or I would just never eat.

Blownaway

what other cancers does Tamoxifen cause?

L2girl

I am another one who lost weight on tamoxifen, 22 lbs in the first year, and have kept it off. I exercise and watch what I eat, though. I walk an hour a day, but I love to walk, and also have recently started to do yoga, which I also really enjoy. So, not everyone gains. I also don't really have any side effects from tamoxifen, (except high estradiol levels and ovarian cysts), but they don't cause any symptoms, so can't complain. So far, so good

colleen1013

I lose 8 Lbs since I took tamoxifen seven weeks ago, not sure if it is SE, I do exercise a lot and watch what I eat.

Professor50

Okay, color me inspired! I will not give up. Still, I am really glad I just broke down and bought some clothes that fit. If the clothes I bought end up being too big in the next few months, I will be happy to donate them to charity!

No question I am feeling much better on tamoxifen than I did on lupron+exemestane. Today I am actually able to put a ring on one of my fingers! Phew! Keeping fingers crossed.

FastWalker

Astarte: Hope your first pill went well!

chipmunk57: Sorry to hear of your nausea. Do you take Tamoxifen with food?

Blownaway: Very small risk of uterine cancer. Be sure that your OBGYN knows you're on Tamoxifen so he/she can monitor you.

L2girl: That gives me some hope! . . . What do they do about the high estradiol levels and ovarian cysts? I have had major problems with fibroids - I sure hope more gynecological problems aren't on their way . . .

colleen1013: !!

Professor50 : Glad you're feeling better - hope it continues!

oceangirl654

Does anyone know how long the PMS moods (angry, crying, feeling horrible like I can't do anything) last on tamoxifen? I assume it's because of low estrogen. Is it just the first year while your body gets used to the low estrogen or does it last the whole time you take tamox? I am on my sixth month and it has been getting worse lately. Thanks for your observations!

Loral

I have been worried about blood clots do to Tamoxifen intake and I had my MO order Factor V Leiden (blood test), my results came back negative, maybe if you ladies are concerned you could have this test.  http://ghr.nlm.nih.gov/condition/factor-v-leiden-thrombophilia

Cmo65

BreatheDeep, I made the jump and am taking it. I see you did also! My biggest fear was the blood clots so I decided to make a commitment to work out.

FastWalker

Loral: Glad your results turned out negative. Thanks for the suggestion!

josie123

professor50

Ive been pretty depressed about my weight gain. I wish I could lose. Can't seem to stay on a diet like WW

But its not like I eat more and I'm more active since taking the plunge and treating my depression with counseling and Lexapro.Thanks to Tamoxofin I got depressed. Never had it before but could be the whole cancer journey. You have to take the good with the bad I guess. But my MO wouldn't even refill my Lexapro without making sure I realize it could effect the effectiveness of The Tamoxofin.Why would she even give it to me in the first place. I'm feeling so much better on it that its worth it to me because of quality of life.

Wendy3

Hello Ladies,

I would love to join your group as seeing since my diagnosis the only thing I have been given is Tamoxifin. I've been on it since June 20th, the hormone crying was very present a few weeks ago but now it's better. Night sweats are horrible every single night I get up to change clothes and sheets..sucks. In addition I've lost 15 pounds which worries me a bit getting on the skinny side of things which is not so good for me. I'm 51 years old I'm stage four .

live_deliciously

welcome Wendy. I've just been on tomoxifen a little over two weeks so I can't offer much experience. I fully get the night sweats (wakes me up too and I'm just soaked) but i had them before I went on tomoxifen too for years. I tried hormone therapy for about 9 months and they stopped. Then I was diagnosed with BC and went off hormone therapy. Night sweats came back and now i have hot flashes during the day. At least 8-10 a day.

willowreed84

I have been on tamox for over a year now and I gained 15 pounds in 6 weeks!   After I finished rads I started eating no sugar and no white starches ( flour, potatoes, bananas, etc).  I lost 5 pounds right away but I've been stuck since then.  I went to the thrift store and bought a small wardrobe that fits.  I feel better in clothes that fit.

Tresjoli2

I picked my bottle up today. Looks like my pharmacy carries the Watson brand. My MO wants me to take a break from chemo, so she said start Columbus day weekend.

BreatheDeep

Hi Wendy3 ,

Nice to have you as part of our group discussion, welcome.

So, I took 1 pill on September 7th, and that was it. I felt so bad the next day that I made the decision that I personally cannot take this drug. This is no quality of life, and I believe that just adding more of it to my body is not going to get better (for me). I have spent the past many weeks doing so much research that I can't even count the hours or articles I have read. Since I am not going to take the drug, I still have to do SOMETHING. So, one woman on this site suggested reading the book "Cancer-Free" by Bill Henderson and Carlos Garcia MD. The book has information within it that my intuition told me but I had no proof of, but also gives so many options for adding alternatives to my conventional treatment. Reading this book is honestly the FIRST time since my diagnosis that I feel like I have a sense of power about what happens to me. After surgery, radiation and the stress of having a BC diagnosis, my immune system is very low. If it's low, how can my body fight off anything else. This book has given me multiple, inexpensive examples of things I can do immediately to build my system back up. In addition, I heard of a website called Breastcancerchoices.org that is again, just another place to do research on BC. I am changing my diet completely, removing all refined sugar (not easy for me either) eating organic raw foods, etc. I asked my doctors at the very beginning of my diagnosis if there was anything I should change in my diet, anything I should or shouldn't eat, and they all said, "no". I found that shocking at the time, but even more so now given what I am reading in so many places. So I share all this here only as my own story evolves and my decision to not live my life in fear of a cancer recurrence and Dr's threats if I don't take Tamoxifen. I choose to take control and do everything I can to insure my body will be able to fight off any cancer cells so I do not have a recurrence. Everyone must do whatever is right and true for them, whether we take the drug or not. As everyone says, it's always a very personal choice.

BreatheDeep

Hi oceangirl654, I don't know anything about how long the PMS moods last on Tamo, but I have read on websites about the side effects that 30% of women on Tamoxifen deal with depression. (I would guess that most women diagnosed with BC are dealing with depression anyway! I know I have been) It's worth looking into further on your end and certainly asking your Dr. about it as well. I hope you feel better, sending a hug.

chipmunk57

fastwalker I tried it with food, without food, morning, evening, everything except standing on my head, lol. I no longer take it due to PE, and I gained 5 lbs as soon as I switched to Arimidex. It's great to have an appetite again though.

FastWalker

chipmunk57: LOL, you are funny! Glad you got your appetite back - stomach issues stink.

lala1

That was my BS who told me the story of all the docs at the conference where only one raised his hand with a patient with weight loss. He wanted me to understand that weight gain on Tamoxifen was very common but could be managed so I wouldn't get discouraged with my weight loss attempt. My MO told me almost all his BC patients had up to 40lb weight gain in their first year on Tamoxifen. He emphasized that I should work at keeping a good weight but not to stress about it. On that note, I met with a nutritionist about a month ago. I have been on Tamoxifen for 2 1/2 years and have been lucky enough to only gain about 5 pounds, mostly just after diagnosis. I had lost 20lbs in the year before diagnosis and wanted to get back to that plus 10. I have been exercising 1-2 hours a day, 7 days a week, limiting myself to 1200 calories a day and still not losing a single pound. I have been soooo discouraged. So I met with this nutritionist at my gym. She goes over my exercise and diet with me and tells me that I'm doing too much. She said exercise 5 or 6 days a week and that if I want to do something every day then float around in the warm water pool on my off days. Then I should be eating back around 50% of my calories burned exercising. She said I was throwing my body into starvation mode and stressing it pretty badly by doing so much and that I was actually increasing the inflammation in my body which, as we all know, can contribute to BC among other problems. So I tried it. Lost 3 pounds in the first 2 weeks. I've maintained since then but most of that 2 weeks was on vacation. While on vacation I just tried to eat normally and do some fun walking and swimming. I pretty happy with being being able to enjoy myself and still stay the same weight, so I'll take it! The nutritionist said people always forget the "caring for your body" part of being healthy. And I have found that now that i"m not stressing about exercise and dieting, my hot flashes have decreased in occurrence and intensity so win win! Anyway, this is what is helping me so thought I'd share.

Also, my MO put me on fish oil and aspirin the day he started me on Tamoxifen. He said it can cause blood clots and these 2 items were what he feels naturally helps to prevent them. He said I had to take a fish oil with a combined level of EPA and DHA of at least 900mg. I buy it from Sams Club. They have several different kinds but only one that has that level of EPA+DHA. And I started on a daily baby aspirin but found that I would bruise from something as simple as resting my chin in my hand for long periods. He changed me to twice a week and said most docs know that that helps just as much as daily but without all the bruising and bleeding issues. Now, I do take turmeric and ginger for my muscle pain which act as mild blood thinners but I got his OK before I started. So maybe for those who have severe bruising, ask your doc about decreasing the number of times you take the aspirin. And my MO was quick to point out that the fish oil and aspirin are also great for my heart as is the turmeric and ginger! All of these decrease inflammation which helps with weight. Maybe this is why I've managed to maintain despite the fact that I love fast food!!

Astarte

Hi everyone, been pretty busy lately but have two mins to catch up. I am not faring so well on this stuff. The manufacturer is Teva, and a lot of people say that is a better generic (they are all generics I read) but it doesn't seem to be for me. I'm having really bad cramping and constant pain in my hands, they are also very stiff. It's also made my insomnia worse. I am lucky if I get 3-4 hours of sleep a night and I'm grateful I have a toddler who loves to sleep. I feel like all I do is whine lately. I just want a life do over. That would be nice.