Bottle o Tamoxifen
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Memory problems can also be attributed to Tamoxifen. "The researchers were able to isolate the cells in the human brain and nervous system that are harmed by tamoxifen therapy."
http://www.webmd.com/breast-cancer/news/20130917/t...
Gee, I wonder what else Tamoxifen does?
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Anyone else have this? I've been on Tamoxifen for 6 months. Saturday I woke up and went downstairs, got up and down a few times then sat for 10 or 15 minutes. When I stood up, my knee was in pain to walk, bend, etc. and has been in pain ever since. It is getting better, but it just came from nowhere. I was almost nauseous from the pain on Saturday when walking. I can poke and prod it with my fingers and hands while seated and feel no pain at all, only hurts when using it (or bending or twisting it). I'm wondering if it's an example of joint pain from Tamoxifen.
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I also have a knee pain (only on the left) suddenly appeared two months ago, I didn't injure my knee, also cannot find any swollen part, sometimes it gets better but may turn worse the next day, I cannot bend or twist my left knee, it is strange that it only happen in one knee, I am really upset not able to enjoy my daily walking
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I took my first Tamoxifen pill this morning after breakfast. I will look out for any of the side effects you all experienced, and keep you posted. Thanks
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I have been on Tamo since Dec 2014. My biggest complaints about the se from Tamo is 1) hot flashes and my oncologist put me on Effexor. 2) I have gained weight and down to three pairs of pants I can wear. 4) Memory problems, 5) eye issues and a few other bothersome things I can deal with.
This Jan, I decided to take control of my life - well, as much as I can.
I started getting off of Effexor mid Dec and has taken about a month to get off that drug. I would say I am about 98% back to feeling my old self pre Effexor. I would rather deal with the hot flashes than feeling high and not myself all day long. I will never take Effexor again.
On Dec 28th and 29th, I went to a wellness dr and a dietician. I am on a very healthy detox diet for the next 30 days and check in every Monday for accountability. I have lost 8 lbs in just a little over 2 weeks. I am very excited about this. I have to say, I haven't felt this good in over a year. My energy levels are really high, I have started walking/running again. I feel great!
I wish my oncologist would have suggested seeing a wellness dr and dietician. in the beginning, I feel like the oncologist just listen to you, write a prescription and send you out the door. I hated how I ended up on so many other drugs to offset the se from Tamo.
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Thanks solfeo and colleen for sharing your experiences with knee pain. It's good to know I'm not alone. I'm really frustrated. I am not an athlete, but I had done two triathlons and a couple long bike rides in recent years (much to the surprise of my family and friends - mostly to have a goal for keeping in shape). I had planned to do both again last year and feel like cancer robbed that from me. So, as kinda my own personal victory over cancer, I'm trying to be able to do them this year, and then wham! my knee hurts. I hadn't even done any work out for a couple days prior. I can almost walk normal today and am hoping to get back to trying to run or cycle. Hopefully it doesn't linger forever. Everyone says exercise is one of the best ways to prevent cancer or reocurrence, but then our treatment gives us side effects to hold us back - UGH!!!!
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wow Cid! Great job taking control. Very happy for you.
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Cid I would have to agree I think the oncologist mean well for the most part. But what they give us does not necessarily make us better. Also unfortunately many are motivated by money. Seeking an alternative solution is great.
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keepwalking, I wonder the same, if some of the weight gain is water retention. I have an issue with puffy fingers and feet that hasn't happened since pregnancy.
I also wonder if some weight gain is from an increase in bone density?! Apparently tamoxifen is beneficial to bone health. I have never had a bone density scan, so I personally have no way of measuring any change. Has anyone heard anything about my theory?
I have gained 25 pounds since I started tamoxifen nearly three years ago. My kitchen no doubt is mostly to blame. I'm starting to drop some pounds since starting WW and cutting way back on carbs at the beginning of January.
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I am 52 now but about 2 years ago, I gained about 10 pounds. Although I was premenopausal, I think you can gain some weight around that time anyway so hard to say if it is Tamoxifen or not.
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A tip for those of you who have trouble remembering to take your daily tamoxifen pill -- get one of those plastic daily pill sorter compacts.
I wish my pills came in one of those blister dial packs, similar to birth control pill packaging. I have seen photos of tamoxifen like this, but maybe that was the fancy non-generic brand.
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gemini4 - I have read research reports to the effect that tamoxifen can increase bone density in post-menopausal women. I was wishing that was the case for me (but probably silly to have expected that after only 2 weeks!). However, that idea went away when I promptly lost the weight again on the 2-weeks break from tam. Now I have been back on for a week. I don't see any weight gain on the scale, but I am also having low appetite right now because of the rads. My fingers do feel puffier again.
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keepwalking, have you considered acupuncture to help with your side effects of rads? I had treatments along with doing qi gong (similar to tai chi) during my six weeks of rads. Really felt it made a difference. Right away at the start of rads treatment, I felt queasy and (for lack of a better term) cooked! Acupuncture and qi gong took care of that and kept my energy level up. And I greatly increased my water intake.
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Day 11 from what I can tell. Nothing to report. Have faith my friends. All will be well.0
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Day 4 for me and so far I'm ok
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I am on Day 22 and still having chills but again, that started before the big T. Has anyone else noticed that after chemopause and T, they feel less moody?
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I have been on Tamoxifen for 13 months now. I go from freezing cold to dry burning hot. Some of these effects are no doubt residual from the lupron I was on since I have only been off that for 6 weeks. My hot flashes seem worse at night when dose is wearing off. Has anyone had success in taking 1/2 dose twice daily with less effects?
Scottie
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I am still on the fence about starting tamoxifen. Did your doctor order any tests before you started taking it? I made an appointment to see my internal medicine doctor to have blood work and a bone density test done. I am also thinking about seeing a second MO just to get another opinion about starting this medication. I guess I just don't have confidence in her. When I asked her about the Oncotype test she told me it was only to see if chemo would be needed. I know from reading this board that many of you with a DCIS diagnosis have had the test done and received a recurrence score. Your opinions appreciated.
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I start Tamoxifen tomorrow and am really nervous--incontinence? Nausea? I had a really, really tough pregnancy with nausea ten years ago. I can't do that again. Also, I noticed some of you take it at night. Suggestions for when best to take it? I usually take my meds with breakfast but if it's better to take at night please do tell!!!
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Jabe, you won't necessarily get nausea. It seems that everyone gets different kind of SEs and some get barely any. I had a very bad nausea throughout my chemo and for a couple of months afterwards. I have been on Tamoxifen for 6 months or so and I do not experience nausea. I take mine right after dinner, so I'm sure my stomach won't get upset this way.
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And don't assume if you get it, it will last forever. I had very mild nausea for about 2 days.
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Thank you trvler! Is there a reason for taking it at night instead of in the morning after a meal?
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I take mine in the morning so I can split up the number of meds I take in the am and pm. No medical reason, just preference.
CTgal - a second opinion is always a good thing, if you are unsure. We all need to be our own advocates. It could be that your ER+ percentage is very high, and in that case, hormonal meds are usually used for 5-10 years. I did not fit into the category for getting an oncoscore, but my MO did talk about recurrence numbers when we decided on my treatment options. If you are premenopausal, tamoxifen is the med available, there is also ovarian suppression and AI, ovarian suppression and tamoxifen or oopherectomy and the meds. Post menopausal is AI or tamoxifen. The bone density test will help determine which is best. AI = bone loss possibility. Tamoxifen = bone building possibility.
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My gyn also wanted a baseline pelvic ultrasound before starting Tamoxifen. She said it was just in case there a problems later, she will have something to compare it to
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Tamoxifen has a tendency to thicken the uterine lining. It happened to me after 6 months and we did a biopsy to make sure it was truly benign. Phew! It was
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I take mine at night so my hot flashes are while I am sleeping. :-) I don't have many. The big issue for me I think is forced menopause at 40. My joints hurt and I feel like I aged dramatically, and I'm still chasing around a 3yo.
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I take my pill in the morning and never felt nauseous from it. The pelvic ultrasound (as a baseline) is a good idea. My gyn did the same. I had some endometrial lining thickening, had tested and thankfully it was benign.
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I had a thickened lining that we watched over the course of 8 months. It gradually got thicker till I finally opted for a hysterectomy. Feel much better despite a couple of hot flashes at night. But I was 51 and perimenopausal when I did the surgery so maybe that made it a little easier.
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I'm on Tamoxifen because I am very ER+ and was pre-menapausal,. I did several rounds of lupron which put me in menapause, but had to stop due to side effects. So I'll have to wait and see if my cycles return. I had baseline ultrasound and am scheduled for a baseline bone density scan.
For those with joint aches. . .I take a host of supplements such as calcium, glucosamile, zinc, probiotics and magnesium. All of these are cleared with MO and help. I am also on gabapentin for continued nerve pain, but it helps with the hot flashes so that's an added bonus.
I am still considering splitting my Tamoxifen dose so I can take morning and bedtime. My worst hot flashes occur at night when dose is wearing off.
Scottie
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I feel that the turmeric and ginger do the most for my joint pain. They've just released some new studies showing these 2 supplements may be more effective than arthritis meds. And I recently started olive leaf extract at the suggestion of my holistic doc. I seem to have never ending sinus issues that started about a year after I started Tamoxifen. It's been about 3 weeks and I can already tell a difference. Nothing like taking things to combat the SEs of things you are taking!!
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