Bottle o Tamoxifen
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Hi All -
I am not responding to any of the above posts, rather I just want to ask a question of my own. I have been on Tamoxifen for just 9 months. There were some side effects in the beginning - some constipation, excessive cold after taking the pill. Also, I had very minimal warm flashes. Now nine months later, I am having more warm/hot flashes that come more regularly. Is this normal? I know sometimes side effects can change over time. Any thoughts?
MarieBernice6234
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Yes MarieBernice my hot flushes have increased. I have been on the drug for just a little bit longer than you and have noticed my hot flushes have increased. They seem to be worse in the warmer weather. I live in New Zealand and we are just coming in to our summer. In the winter the hot flushes don't seem to be so bad but I am really feeling them at the moment.
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MarieBernice, that definitely sounds possible. The increase in hot flashes may be connected more to where you are in peri/menopause versus the tamoxifen.
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Just an update on me: I stopped Tamoxifen again on Tuesday. I thought originally that I could make it until my next MO appointment on the 28th, but I just couldn't do it. I had seen my ophthalmologist again and he said my eyes were ok, and that I should use artificial tears 4 times a day and hot compresses at night to help with the pain and blurriness. I then saw my gyno and she said the intense pain I had felt was the ovarian cysts on the left side rupturing, and that now I have developed a new cyst on the right which is causing my pain there. She told me that I will most likely keep getting cysts while taking Tamoxifen and to take 800mg of ibuprofen for the pain.
I finally decided to stop because I couldn't take the pelvic and joint pain and constant headache, plus the eye pain and blurry vision, plus feeling like I was losing my mind and becoming a complete nut with no control over my emotions. I thought to myself that I could either:
1. Quit Tamoxifen, which will double my risk of distant recurrence to 12%.
Or
2. Keep taking Tamoxifen, which will reduce my risk of distant recurrence to 6%.
3. Take ibuprofen daily, multiple times per day for the joint, eye, and pelvic pain plus nonstop headaches.
4. Apply artificial tears 4x per day for the blurry vision.
5. Get myself some antidepressants and/or antianxiety meds to counteract the ridiculous emotional issues.
For me, the choice was clear. As of this morning my headache is finally a bit better, for the first time in weeks.
I debated with myself about posting this, as I don't want to scare anyone. However, I wanted to post an update in case anyone was wondering, and also to let people know that even with more severe SEs, it's not the end of the world because they will go away if you quit. It's always worth a try because the benefits of Tamoxifen are clear.
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Thanks for posting Summer Angel - it helps to know that others are having joint pain, headaches, vision problems (in spite of getting new glasses)...... I am going to keep taking the Tamoxifen simply because I did not get to finish any of my cancer treatments. Chemo was stopped early due to my body cratering and Herceptin was stopped after 7 infusions due to heart failure. By the way, I also have short term memory problems, nerve pain, burning feet, numb hands, aching muscles, shortness of breath.....the list is a long one but suffice it to say most of my problems stem from chemo/Herceptin rather than the Tamoxifen. Good Luck to you!
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Hi, Fizzdon 52 -
Up here in New England, it is our Fall and then of course. the winter will be coming along. These started to be more noticeable to me for a short while and then of course it continued while I was away in Florida for a brief holiday. I hope they don't become even more of a problem. It is so much more difficult for me to cope with these things (body changes) because I never really experienced the other type of changes that girls/women experience. I have never had a period before and couldn't have children. (Sorry if too much information.) So for me - this is a source of frustration as I feel out of touch with my own body.
I just looked at the bio under your name and I wasn't that there were so many types of Tamoxifen drugs available. Is that the difference in the Australian versus our medical market or what? I hope that you are doing relatively well now after your experience.
MarieBernice6234
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Hi, Gemini4 -
Hi, to a fellow Massachusetts Survivor -
Oh great (groan) does that mean that the further and further I get into menopause it could keep getting worse? Yippee! what fun }} Where did you have your cancer treatment done? I had mine done at Lahey Clinic. They do have some great doctors there. I also didn't need any chemotherapy (in the arm type - tamoxifen is oral chemotherapy) Are you still taking the Tamoxifen?
I have no patience for this menopause stuff - can't relate to it. Never could have a period or children for that matter. Just to proof that Mother Nature has a sense of humor, though, I can experience menopause. Oh werniceell I guess it could be worse. Where in Mass do you live? I live in Burlington.
MarieBernice6234
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hi MarieBernice6234 -- I had all my treatment at Mt Auburn Hospital in Cambridge. It was very convenient, as I live about ten minutes away, and I like all the doctors. Their breast center and treatment teams are highly regarded, so I was happy not to have to go into downtown Boston for treatment (especially when I was going five days a week for six weeks of rads).
Yeah, my MO tells me that all the side effects I'm feeling are closely related to menopause, and that the tamoxifen is simply amplifying them -- that I'd be experiencing them just being in menopause, but perhaps not as severely. Fortunately they're all manageable for me, and I'm glad to take something every day that can prevent a recurrence.
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Blownaway - check out the thread on Venting about Permanent Neuropathy. That is a good strand for the hand/feet issues you are having.GPDeBBIE
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Gemini4, I was treated at Mt. Auburn as well: Drs. Pories, Weissman, and Lamb. Beth Roy, the Social Worker is wonderful too. I was diagnosed shortly after my 48th birthday, so we have a lot in common. I am having no trouble with the Tamoxifen, the chemo put me into chemopause, so I think that makes it easier to adjust to Tamox
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Girlpower - I've been on that board for some time. I also have no sense of smell and very little taste and wonder if that is also considered neuropathy.
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SJacobs, I have the exact same team of doctors! Beth Roy was such a help -- so comforting and reassuring -- when I was first dx'd.
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Blownaway - good question! That would suck. Smell affects the taste of everything.
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Staring at the prescription bottle on my kitchen counter. Debating whether to take in morning or evening--my instinct is evening?
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Queenmomcat, I take mine in the evening, with dinner.
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queenmomcat, I take mine in the morning right after I eat breakfast, you should do what you feel is right for you. I have been taking it since September 18 and so far, so good, I don't have any side effects, maybe a warm flash here and there but that is it. I was never afraid to take it though, I see it as my little ninja, ready to kick some estrogen booty!!!
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Thank you both--I'm not particularly afraid to take it, as I've had decent luck with meds generally. Just wondering how much it matters when (I don't think it does).
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I don't think the time you take it matters all that much. I take in the morning because if it's going to give me a hot flash, I'd rather have it during the day over them keeping me awake at night. Almost 3 years now and that has worked pretty well for me.
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queenmom - I have fewer s/e's if I take 10mg in the morning and 10 mg in the evening.
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That's definitely a thought--no SEs yet. I guess that's good, but we're only five days in.
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Can anybody explain me, what color is normal discharge? A year ago I had some bleeding spots, it was polyp, removed.Now I have some concerns, but not sure. tiny yellowish light brownish , not like last year is OK? I so dont want to go through it again...
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I m being treated at Beth Israel. Love it there. I've been on tamox about a month. My feet are killing me. Hurts to walk. Is that a normal side effect? I'm so achy at the end of the day
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Tresjoli, I had that SE early on when I started Tamoxifen. It was one of my SEs that came and went after the first month or so. The MO thought it might be a hang over from the taxol chemo which gave me a bad case of neurothophy (sp?) since it was in both my hands and feet. Hope it dissappears quickly for you too. There are still times I came in from work exhausted and with aches and pains.
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Morning ladies wow busy thread. I have been on tamoxifen for six months now. Joint pain was terrible knees hips until I found Cucumin now that's taken care of. The mood swings are horrible it's like PMS times twenty I found cannabis to help with that sorry if I offend with this statement but it's helped immensely. Exercise everyday has helped as well. Night sweats are awful hot flashes I haven't experienced yet I'm sure it's coming though down the pike. I wish you all wellness and a great weekend.
Wendy
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I have been on Tamoxifen for a little over six months and have had what I and my MO consider a lot of SEs. One leaves a new one pops up. However I am glad to report only cramps, muscle aches, night sweats, hot flashes, and insomnia seem to be hanging in there but they are not as severe now. Even the horrid brain fog and memory lapses are much improved. I am glad I hung in there and continued Tamixifen. My MO also had me take a two week break to kick start my system which helped a lot. I also see a neuropathic oncologist that works with my traditional MO and she has helped tackle the SEs.
I know we all are different but for those who are experiencing a lot of SEs and severe ones I hope in time they go away or improve.
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I also see a holistic doc for my SEs who has helped alot. He put me on the turmeric, ginger and magnesium for the muscle/joint pain which made a huge difference!! He also suggested a very tiny dose of melatonin for the insomnia. Definitely worked for me and after a few months I quit but still sleep very well. I think I just needed it to regulate me. And after my hysterectomy, I went to him for hot flashes/night sweats and found Peridin-C and iCool. I strongly recommend a holistic doc if you can afford it since most insurance won't pay. I felt that he, along with my myofascial release massages, were what helped me the most in my recovery.
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Agree Lala, the holistic/naturopathic/integrative Drs help a lot. I didn't take medicine before this journey and choose to take the alternative path when appopriate for SEs but I am one that wholly believe that it compliments standard care and does not replace. So when my PCP or MO indicate ther e is not much they can do or try a supplement I lean to my integrative oncologist. She also helps with wellness by helping me track and change my diet and exercise, ways to lower stress -- massages, yoga, and a salt soak. I stopped getting the acupuncture in August when most of my pain was under control. The salt soaks she introduced me to are heaven and there happened to be one in my area. So relaxing and a good stress reliever and helped with the sore muscles when I increased my exercise.
I should have listed my regime. I have to watch the fillers ie no yeast wheat, gluten, corn syrup so she suggested a few brands and cautions over the counter supplements due to the fillers, herbs and plant based extracts which are estrogenic. I order the recommended products from an online integrative site, Healthwave, that the integrative ONc uses. Cost is comparable if not cheaper than what I find in health or drug stores.
I take Magnesium and ginger for the muscle joint/aches and cramps, Melatonin to assist with sleep and HMC Hesperidin to help with the night sweats hot flashes, and a veg-vitamin that assist with immune function. I chose the HMC Hesperidin over Exxefor and it seemed to reduce my hot flashes significantly. I also take vitamin D. I took vitamin B6+ B Complex for my peripheral neuropathy which improved considerably and after a few months quit since my peripheral neuropathy improved. As many have stated turmeric and cumin which she has me put in my juices. I
I have an appt with her in a few weeks and will let post if there sre sny nuggets that she may give. Since I strongly believe in passing on what I can. I wish I would have found her at the beginning of my treatment. The good thing she does work in parallel with my MO and PCP and keeps themupdated on the supplements she has me on.
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Does Tamoxifen actually damage our joints or will my knee pain go away in 5 years when I can stop taking this stuff?
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Good question, Blownaway! I want to know that as well! Also, what about the blurry vision...does that return to normal?
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