Bottle o Tamoxifen
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Norma ~ One month??
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NormaJean 65 - I've heard 6 weeks being mentioned in a couple of forums. Nobody seems to know. It looks like for some people the SEs reduce within a couple of weeks even though it is not totally out of their system, which is useful if you are taking a short break from the drug.
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gardengypsy & Catkin, thank you for your input. My original onco that I was with until his retirement (6 1/2 yrs) and my new onco in the same practice had very different takes on how long I should be on Tamoxifen. First onco said 10 yrs w/o batting an eye (telling me it takes 3-4 months to be completely out of my system) while the new one (also very highly respected) said "they threw everything at you that was available plus you took steps w/ a second mastectomy & hysterectomy, I don't tell my pts. with similar diagnosis & tx that it is necessary to takeTamoxifen for 10ys. You had a very small tumor & have done well to this point. I do have women who want to take the hormonal tx that want to stay on it longer than 5.yrs."
After 6yrs I was having se's lasting longer in duration & more frequent leaving me feeling like I was living in a shell of who I use to be, no energy, fatigue & tired ALL the time plus my hair falling out again to the point that the beater bar on the vacuum had to be cleaned everytime it was used. I was told he would continue me on the tamoxifen if that was what I wanted but at the same time there was such a thing as quality of life. That was the first week in Dec., then in Jan. I knew I had to at least take a vacation from Tamoxoifen. The changes are slowly revealing themselves and pleasantly for the better. The fact is that a pt. can have a reoccurrence while on Tamo. I decided I was at a crossroad in my life & quality out weighed quantity. This was a personal choice & in no way do I want anyone here to base their own decisions based on me. We are all different in age, in disgnosis, in tx received and in se experienced. I would encourage each and everyone to first communicate to your onco any difficulties & don't give up too easy. This is a long journey with no guarantees but one not to be taken lightly. Wishing you all the very best outcome & know that our time here is in God's hands.
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Someone is listening.
I really like the idea of "Survivorship Care Plans."
http://www.breastcancer.org/research-news/untreate...
BCO rocks
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NormaJean - Well done for staying on the tamoxifen for 6 years. I'm sure you've got a lot of benefit from that. I've been on it for a year and 2 months and I'd love to stop, mainly because of low mood/ anxiety (which I suspect is caused by the drug, at least I hope it is), but I don't dare. I've been told to be on it for 5 years. I would have refused 10 years because I only had DCIS and a very small amount if invasive cancer. That is great you've had some lifting of symptoms after not taking the Tamoxifen for a while. Good luck with whatever you decide to to.
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gardengyspsy. . .I agree. I could use a care plan. MO handles most of my care, but I have to coordinate the rest. I'm on Tamoxifen for 10 years, i.e., 8 more.
Scottie
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I just started Tamoxifen before the holidays. I was on femara but the joint pain was terrible. I have less joint pain but am having some nausea. Any advice? Love, Jean
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ore the nausea... Take it at night before bed. Also my bottle says take with food. Not that I do.
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Jean, for some help in the moment, you can try ginger chews/candy. I find it in the Asian section of a grocery store. It only helps for a while, but does help.
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Ginger capsules (pure) are really effective and very safe.Two at a time.
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Thanks ladies. Love, Jean
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Well I had a TVU and uterine biopsy today. My post meno lining is 2.8 cm, my gyn would like to see it around .5 cm. Looks like I may have to try Aromasin. Fingers crossed for benign finding from biopsy.
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Farmer Lucy...praying for a benign biopsy. Please keep us informed. Love, Jean
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Hi there,
I just had an abdominal ct scan last Friday due to colon surgery that I'm having on this Friday. When I received the report, it shows that I have several uterine fibroids, the biggest is 6.8cm! I saw my gyno one month ago where I had a pelvic exam, no issues.I have been on tamoxifen for over a year, no periods for two years. Should I ask for a hysterectomy since I feel this is due to the tamoxifen? Any advice would be appreciated. Thank you.
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I've just been on the Tamoxifen for 2 weeks nonstop (decided to take a break after 1st week because I was going to Disney with my daughters and didn't want to ruin the trip feeling sick). The nausea when I first started was AWFUL. Felt like I was pregnant or seasick or something. I notice in the small print that it says to take with food in case of nausea. I find that if I eat a large meal with the Tamoxifen, I'd don't get the nausea. I'm probably eating more than I should for breakfast and dinner, but at least I'm not nauseous. I could not have continued on Tamoxifen if the nausea had lasted for 5-10 years. I also take Pepcid AC if I have reflux before I go to bed. That helps the night nausea big time.
I find that I am just TIRED. I don't think it's necessarily the Tamoxifen, just the fact that this whole cancer thing has been lengthy and the adrenaline is wearing off. Plus I am months and months behind on my To-Do lists. I've actually started taking a total R&R break after lunch nowadays, and I don't even feel guilty.
Good luck, and hope you feel better!
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Beaglemama~ I am hearing you about the exhaustion. As you said, it's everything: the cancer, the T, all of the above.
I think that we need to eat well, sleep a lot, get fresh air and sunshine, and DO LESS. I will never again feel guilty about not getting stuff done.
Thinking of getting a multi-spectrum light for the depression. Anyone out there try this??
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GG - I think the light would help a lot. I think I have SAAD, and if I go too many days without sun I just curl up. I don't have a light, but I do spend most sunny days outdoors. Winters are awesome in Oklahoma.
Beaglemama - I am owned by by three beagles plus a beagle wannabe. Love them so. Millie sleeps in a crate on my nightstand bc she'd bark all night long if we let her out. She snores so loud the walls shake.
Hugs all around.
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Fotheringay Hi Carrie, I am 61 and was prescribed Tamoxifin by my MO yesterday for 2 1/2 years and then fermera for 2 1/2 years
I had a discussion with her in regards to why she would recommend tamoxifin as I thought
it was only used for premenapausal woman she explained that the SE's can be quite severe on the femera and most women will go off before 5 years so she said they have had more success with using the tamoxifin first then followed by the femera.
She did go over SE's with me ( I took the hormone therapy chart from here with me) and told me the % on most of the SE's were very low I am still undecided on the tamoxifin but she gave me the option of going with Femera only for 5 years or the tamoxifin and Femera, I just want to make sure I am not trading one problem for another ie: risk of reoccurance v/s risk of ovarian or cervical cancer.
Charlene
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Farmer~ I have no idea how to shop for one of those lights. I've heard that it's not enough to just sit next to a lamp, you want to have loads of reflection from walls from the rays - like sitting in a closet with a lamp!!! Here in Vermont there are a lot of long, dark, winter days.
Eating well, sleeping more, doing less. It took Breast Cancer to teach me how to take care of myself. Go figure.
So, I lasted just 8 months on Tamoxifen and I am going over to the AIs.
I don't know if this is a good decision, but the herbs and supplements I take supposedly interact with Tamoxifen pathways.
I'll let y'all know how it goes.
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gardengypsy... What herbs and supplements do you take that interacted with the Tamoxifin?
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These leg cramps at night are making me crazy, I keep the ben gay near the bed. I am afraid to roll over in bed as that is when they come on. I hate this pill.
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Sheri64---Have you tried magnesium glycinate? Lots of gals have found relief from leg cramps with that.
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LALA I haven't tried that yet, I will look for that this weekend. I just hate to take another pill.
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Reaffirmed my commitment to BEGIN taking Tomoxifen last night, only to AGAIN put it off until tomorrow!!!! Which is now, TODAY!!! UGH!!!
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Im just finishing bottle four. Hot flashes and a few night sweats are my symptoms so far. Im doing this one bottle at a time!
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I suppose that would be different based on the number of tabs in a bottle? I get 180 everytime. I'm on bottle # 3
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Cinnamon, I lived in Gurnee for about 6 yrs in the 70s-80s. Prior to that I was born in Chicago, then moved to Winthrop Harbor when I was 11 y/o. After I got married to my first husband we moved to Zion, Waukegan, North Chicago and then Gurnee.
I too am scared of taking the tamoxifen and after having the prescription filled a month ago, decided to finally take it tonight. So we can go on this journey together
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Variable - I hope you managed to take that first pill. I found the first one the hardest.
Elcee1204 - Well done getting up the courage to start the Tamoxifen. I put it off until after the radiotherapy, I didn't want any side effects from the two treatments mixing up together.
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Charlene...very interesting that your doc said most women won't complete the aromatase inhibitors due to SEs. I've been saying for a long time that my doc at a major NYC university based teaching hospital told me that only 50 percent of women complete the 5 years. Ive gotten a lot of push back on this from this discussion forum. So now I'm wondering what the real stats are? Did your doc say that this is just what she found in her experience or is it scientifically documented? I'm very interested in this subject because I feel we need better treatment options. Would love to hear back from you.
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