Bottle o Tamoxifen
Comments
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almost 3 month on Tamo now and no big issues but I can tell the sun and summer heat won't be comfy!! A mild warm up in 30 degree weather no biggie but a warm up in 86 is different
. When I get warm in the sun my skin gets prickely feeling like acid is coming through....yucki !! Other then that I take it in the am and sleep good at night 
my knees feel like they belong to a 90 year old getting up and down but when I'm going they are fine 0 -
lol, I'm not alone with the feeling "old". I literally stand up and stay in place for a few seconds to balance myself and then off I go. My husband finds it very funny. We joke about it. He offers to give me a little nudge to get me going. Lol
We've got this lady's.
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annika I get the prickly feeling too! It's crazy! Like a million needles stabbing or bugs biting all at once. Not pleasant for sure, but thankfully it doesn't last too long.
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kjfromca (Kim),
I get confused by this as well. My last chemo was 5/2/14. I am having my port removed tomorrow, and I am starting rads next week. My oncologist had me start on Tamoxifen last Friday. Both my RO and MO agreed that starting Tamoxifen while on rads is ok.....even though some prefer to wait until after rads. Anyway, my last period was 3/31/14, and I have only had on and off spotting a few times. My MO checked my blood work and said that it showed I am pretty menopausal (at 47 yrs of age). She is hoping the Tamoxifen keeps me from getting my period, but she said that if I do get another full blown period she would give me Lupron shots to shut down my ovaries. I hope not....I have not read good things about the side effects of this shot, and I've been through enough. I've heard from some that Tamoxifen stopped their period and from others that they got it again. I guess it's a wait and see....very stressful.
Does anyone know if you have a hysterectomy if you are kept on Tamoxifen?
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kjfromca,
I forgot to ask you. How long did your PS say you need to wait to have your tissue expander replaced?
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Cannoli1, usually after hyster/ooph you can go on an AI. But I'm post-menopausal and on tamoxifen because of the SEs of the AIs. We're all different.
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Ladies--please get a baseline transvaginal ultrasound if you're on Tamoxifen. As I posted a couple of pages ago, I insisted on one although my gyn said since I had no issues, I didn't need one. Then she tells me I have a thickened lining, enlarged uterus, numerous fibroids and a very large ovarian cyst! She was quite surprised. I have now met with another dr for a second opinion. He confirmed all of this and is also recommending a hysterectomy. Once you have cancer, you have increased risk of other types. And BC increases your risk of other reproductive cancers. Then you add Tamoxifen to the mix, which increases risk of endometrial cancer, and it really pays to be vigilant. And I've always heard that the reproductive cancers (ovarian, uterine, endometrial) tend to be "silent" cancers in that many times there are symptoms. I certainly don't want another surgery, but I don't want another cancer even more! I feel like the Tamoxifen is a good thing in that it drops my risk of BC recurrence dramatically but I also know it can cause other issues so I'm extra vigilant about those.
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lala1...thank you!
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agreed LaLa. I'm seeing my Gyn onco on the 4th to schedule my surgery. I think I posted previously on here my issues, which are similar to yours. I'm sure the surgery will be sometime in July. Fingers crossed.
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thanks, Lala. I have read that about tamoxifen. I have an appointment with Gyn in July. I intend to,discuss this with her!
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Ugh. I had asked my Onc about a transvaginal ultrasound and she said it wasn't necessary, just watch for spotting. She did say to get a PAP every year instead of every 3 years. I see her again 6/12 and I'll push for one. I have a 6/25 gyn appt for a PAP.
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cannoli - I think it depends on your age, and the preference of your MO. Mine said that even if I had a hysterectomy /oophorectomy she would keep me on Tamoxifen for five years before considering switching to an AI. Bone loss is a serious concern for younger women.
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Cannoli1 - I meet with the BS on Fri. I started Tamoxifen yesterday. I will let you know what he says.
lala1 - Thanks for the info.
I noticed that Tamoxifen is used often for post menopausal women, why are they putting some of us on the other ones? I hear those have harder side effects to deal with.
Kim
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mckatherine,
I plan to have that discussion with my MO after my hysto/ooph. I would much rather stay on the tamoxifen for 5yrs and then switch to the AI.
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Lonnie---Please let me know what your MO says about staying on Tamoxifen. I know when I first went on it, my MO said I would be on something for 10 years (at the time I didn't know I would need the hysto) but that he'd keep me on Tamoxifen as long as I was doing well on it. He feels that the negatives were outweighed by the positives. I was diagnosed at 49 and still having periods so Tamoxifen was a no brainer. But now that I'm starting into menopause and going to have hysto plus ovaries removed, I'm guessing that swapping to AIs might get moved up.
I do pretty good on the Tamoxifen. Dealt with joint/muscle pain after about 2 months. Got a thick foam topper for my bed and put myself on turmeric and ginger (anti inflammatories) and a small dose of melatonin and have been doing great till about 3 months ago. I get to sleep fast but instead of sleeping for a solid 8 hours, I am waking after 6. Two days ago I put my DH on tart cherry juice after he had his first mild attack of gout (runs in the family). I did a ton of research and saw that it helped with sleep as well, so I put myself on it to. Last night, for the first time since Feb, I slept my full 8 hours! Was it the cherry juice or a fluke, I have no idea. But I'm sticking with it and we'll see how the next few nights go. And as a bonus, the sore feet and muscles that I attribute to my 4 mile treadmill power walks most days is gone too!! It may all be in my head, but I'll keep ya'll updated!!
Tamoxifen has it's good points and bad points, but so far (knock wood) it's working, so I'll stay on it. It's just a matter of finding a happy medium between the good and bad.....and my MO letting me stay on it after my hysterectomy!
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thanks lala. very interesting about the cherry juice.
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LaLa,
I am on the fence about switching to an AI. I've read that Tamoxifen works for pre and post menopausal women. I would rather stay on the tamoxifen. I've read that post menopausal women can take tamoxifen for 2-5 yrs. then switch to an AI for 5. Supposedly, the benefit is better. I plan to discuss it with my MO and will let you know. I have no SE's other than waking up during the night and the flashes. See article below....the middle section where it says "key recommendations........"
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what brand cherry juice???
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Goodness if that cherry juice did help you sleep again last night, please let us know !!! I am going nuts not being able to sleep at night .. I just know today is going to be rough .. soooo tired from lack of a good nights sleep
I can only keep up the "front" at work so long LOL !!!!0 -
Mrs. Darcy, I totally empathize with your sleep deprivation issue....I actually decided to retire from a demanding job since I was sleepwalking through each day after starting tamox two and a half years ago. Several months ago, I learned about 2mg controlled release melatonin from another contributer to this thread. I tried that and my ability to get to sleep and return to sleep if I woke up, improved greatly.
Right now, I am starting my third month of a tamox hiatus, and I no longer need the melatonin at all...am back to sleeping fine.....and the terrible brain fog issues have abated (yay!)....and the allergies/skin itching is getting better. Of course next week when I see my MO she will be horrified that I extended my "few weeks off" this far. ;/ Had a NED mammo result this week, and am very tempted to stay off this drug since I am very sensitive to it, and have had lots of SEs, resulting in a very compromised quality of life. MO had suggested I try an AI, but given my response to "estrogen manipulation" so far, I am very skeptical of that...and especially given the kinds of joint/muscle pain SEs AIs are known for. To be continued.....good luck, Mrs. D.
I put tart cherries and cherry juice in my morning smoothies....not sure if it is related, but I have been able to stop taking celebrex for the first time in several years. I suspect my daily exercise regimen has helped my joint issues too.....but who knows, cherry juice is supposed to reduce inflammation. Didn't know it could help with sleep, but that would be great!
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Well, I do believe the cherry juice may be working!! I've now had 3 pretty good sleeps since starting. First night, very good. Second night, not as good but I'm thinking I shouldn't drink it just before bed since it has lots of sugar. I had a harder time falling asleep but slept good. Last night, very good as well. I'm taking the Knudsen brand. It comes in black cherry and tart cherry. Black tastes better but tart works better since it has more of whatever it is that works (enzyme maybe?). I'm searching for tart concentrate which will be cheaper and I can mix with water. In the meantime, DH LOVES the tart flavor so I have restrict how much he drinks or he'd drink the whole bottle in a day! I'm going with mostly black with tart mixed in. We are sticking to about 4-6 ounces a day.
I also found the tablets yesterday at Walmart. They are Spring Valley Tart Cherry Extract. I want to use these mostly since they don't have all the sugar, but I think for now I'll use both. I'll let ya'll know after a week how it's going!
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Hello ladies,
For those who have joint pains/stiffness and muscle achiness, how bad are yours? Mine used to be just sore and now, I can say it's pain and bothers me. My arms are shaky when I do my light exercise ( had my reconstruction surgery 6 weeks ago and have yet to see my PS for post-op) even without the 2 lb. dumb bell. I noticed feeling the soreness in February but the discomfort is relentless and more intense now. I was asked to stop Tamoxifen for a month to rule it out but I have resumed taking it again since the pain didn't disappear even without the Tamoxifen. And due to this, I haven't gone back to work since I was diagnosed. I am a dentist and I can't trust my hands and arms with these symptoms. I was told by my oncologist that: it's due to effects of chemo and my body is still trying to recover from all the onslaught it went through. I also read here due to being pre-menopausal and now forced into menopause by the Tamoxifen. I am wondering what other explanations support/answer this situation. I still continue to exercise and do my walks, go for hikes even if I fell crappy. At times the pain affects my attitude I really get cranky and just want to be left alone.
I want to know if I'm the only one feeling like this. Ever sInce my hair started growing I thought it's going to be smooth sailing all the way.
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You are not alone Myra! I too have joint pain from the tamoxifen. It has been gradually creeping up (just like the scale, grrrrr) over the year I've been on it. Just bothersome after 6 months, downright painful now. To the point of interfering with my daily activities. There are lots of other ladies here with joint pain. Here is one thread:
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Jennie93 - yeah it was gradually creeping on me too that i can't believe it is from the chemo. the ladies on the link you shared are mostly having hip and back pain. oh no, i hope the pain doesn't creep up to my hips and back. as it is i am already very frustrated with the arm and leg pain.
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Bounce, I started sleeping better after I changed my tamoxifen to mornings, my NP said it makes a difference for some but not others, so it may be worth a try.
Also, it makes me feel a bit better to know I'm not the only one having that seriously weird stinging feeling. Although I do wish it would go away for all of us
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Floaton - I take my tamox and night and unable to get any viable sleep. How did you do the switch ? Took a pill one night than another the next am or missed one in between ? Thanks
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I'd like to try AM instead of PM and am wondering how to switch. I wake up a few times a night getting hot, then cold, then hot, throwing off the blanket, pulling it back on. Then I'm tired all day.
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When I asked my np how she'd like me to switch over, she said just take it the next morning (not skip a day). I'm not sure if others would have different advice, but it seemed like a question she'd been asked a few times before, so your onc's nurse may be able to answer quickly for you with a call if you're wondering what your team would recommend for you.
I figured it was worth a try, and glad I did but the only downside is that I have found for me it's a little harder to remember to take in the am.
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Juliecc (hey, I'm from Santa Ana!), I switched from bedtime to morning too. I did it over a week or so and just backed up the time by 1-2 hours each day until I was at wake up time. I used a timer on my phone. Floaton's method was certainly much simpler!
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Hey Bec, we are definite neighbors. I live in Orange and work near Main Place Mall :-)
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