Bottle o Tamoxifen
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I didn't take Vit D for joint pain but do think it helped. I take it because my BS swears many cases of BC might be avoided if we all had higher Vit D levels. I argued mine couldn't possibly low as my work involved being outdoors most of the year, but sure enough, when he tested me, it was way too low. He says it's because we all wear so much sunscreen. So I now take 5000IU of Vit D and I feel so much more energetic. But I will say I started turmeric and exercising all around the same time so who knows which one helped the most. (I think the turmeric!)
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Funny that about vitamin D. My OBGYNrecommended that I start taking vitamin d supplements about a year after I started taking tamoxifen, but not because of the tam, because I started having the ore issues with thickening if the endometrium. She did blood testing and my results were very low vitamin d, even for a Canadian. I've been taking it ever since
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Formication - anyone experience this? It's the sensation of bugs crawling on your skin. If you have is there anything to cure it? I swear it's going to drive me insane! 🤪
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I get formication. When I first started tamoxifen it was so bad that I took off a month. It took like 3 weeks for it to subside. I started back up on tamoxifen, but doing 10 mg 5 days and 20 mg for 2 days. I still get the formication, but much less. I can go weeks without and then it comes back. When I’m stressed it is worse. I mostly get it on my face and scalp, but also on my legs. I really think taking a lower dose of tamoxifen has helped me. It was unbearable.
My MO acts like it isn’t an SE, but it obviously is.
So, no, I have no cure, but it is a comfort to not be alone with it!
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It just amazes me the SE's medication can cause! I didn't even know there was such a word as formication until I gooled why I felt like bugs were always crawling on me. Then I googled formication and Tamoxifen - there is an old thread on here somewhere where others have felt the same way.
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vampeyes- where do you get the feeling at? When I googled it also came up as being linked to menopause, which ties into tamoxifen.
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Upper body mostly - back and arms, sometimes it's just a stray hair - another lovely SE I suppose.
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Princess Buttercup -
Move Free is by Schiff -- contains Glucosamine and chondroitin with MSM. I've tried the Osteo BiFlex, and other brands of joint meds, but the Move Free works far better than anything else. I just noticed that the dose is 3 pills per day, but I generally take 2 every workday and have good results from it. I purchased mine at Amazon.
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I'm wondering if the pills made by different manufacturer's of Tamoxifen would have any bearing on side effects? Does anyone know if Mayne is the only manufacturer? I'm still having a horrible time getting any sleep. Possible side effects listed in the pharmacy handout indicate this medication can make you tired. Well, without any sleep I feel tired day after day. So frustrating.
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Veeder - have you tried taking the Tamoxifen in the am? Like you I wasn't able to sleep so I swiched and now take it in the am with no problems. In Canada I was able to switch from a generic brand to the name brand (Nolvadex). I still have side effects but not sure they are as bad as the generic brand I was on. I think it has something to do with the different fillers companies use.
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A friend has been on Tamo way longer than I have and texted me some tips yesterday:
1. SWEAT - if you are an exerciser, good! The more my friend sweats during the day, the fewer hot flashes she gets. If she can't exercise, she will go into the steam room at the Y just to sweat.
2. Taking Tamo at 9-10 p.m. works better for her and she drinks 2-3 glasses of water at dinner
3. Alcohol: alcohol makes the side effects worse, which I read last night while holding a craft beer in my hand. This is the advice I may ignore for the next five years. If you do drink alcohol, drink more water to mitigate the effects.
The two SE I notice the most right now are hot flashes and an almost instant thickening in my waist. I can't exercise the way I did before bmx/recon so that may explain some of it, but I'm convinced Tamo has some culpability in this. And I'm also waking up more during the night, which stinks because I've never been a good sleeper to begin with. Hope some of this helps!
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Hi vampeyes,
I haven't tried switching to the morning yet. I want to talk with the MO first because if I skip my night dose and wait until the morning of the 2nd day, it's more than 24 hours without the medication. When I skipped one pill once I started having bleeding. I'll ask if I should just take it at night and then the next morning in order to switch over from nights to mornings. It's easier on my stomach after dinner though. I'll let you guys know what I decide.
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Veeder - if you do try taking it in the am make sure you have something in your stomach, that could help.
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Thanks vampeyes,
Yeah, that's an issue also. I already take medication to protect my stomach but right before dinner since I eat more at night. I really wasn't counting on taking it for the next 5 years. So would have to change that also.
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Veeder - I am jealous of your 5 years, I was told 10. (insert crying emoji - lol) I also eat more at night, breakfast is a homemade protein shake until around lunch hour. Night time I could eat a whole cow for some reason. haha
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Vampeyes I was also told 5 years, but then told to prepare for 10 years. At this point I may say no to 10. That said when I'm done 5 I'll be 55 years old. Age could be a factor. I think I'll still say no. I've had enough of hot flashes, muscle cramps, waistline weight gain, and overall feeling like poo.
That said the further away I get in time from my surgery and treatment then more confidence I have that things might work out.0 -
Hi vampeyes,
I don't know how these MO's make a determination of how long a patient would stay on Tamoxifen. Sorry to hear you were recommended for 10 years. The option was mentioned to me but not recommended.
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Molliefish, I envy you your optimism. What's lurking in the back of my mind is that my kind of breast cancer, sneaky bastard that it is, is the kind that likes to pop up years after you've been lulled into a false sense of security. I am AFRAID to feel too confident about the future because then the fall will be all the worse when that second bout of bad news hits the headlines. I am braced, all the time. Crouched. Waiting for enemy fire. Yes, I am getting on with life, involved in new endeavours. But still, it is never out of mind. Or if it is, when it does come back it washed in with such power that it knocks everything over.
My onc has not, at this point suggested 10 years. But knowing how I feel, I wonder if I will suddenly feel pushed off a cliff after 5. Why is 5 the magic number? Why not 2? Or 4. What about 5 was arrived at as the amount of time to make you safe? When we all know there is no magic time or thing that makes you safe. So I am thinking that maybe (cause who knows how I will feel then) maybe after 5 years I will ask to stay on, perhaps indefinitely, at a very low dose. Maybe 10 mg twice a week? Or take a tablet every week? I have done NO RESEARCH into the effectiveness of ultra low dose intermittent tamoxifen. But I would be interested to know what the effects might be?
Initially I lost weight. But I don't think it was the tamox. I think it was stress. The weight is coming back. It always does. I don't lose weight as much as temporarily misplace it.
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Runor I like you temporarily misplace weight as well, I have tried loosing it, but it keeps finding me!!!! I just wish there was a magic pill that makes you not crave junk food or food in general. haha
Thanks Veeder, I think I get the big 10 because of my age, but will just take it day by day for now.
Mollifish I love your optimism too, every week there is a new cancer for me. hahaha I hope to reach the point where that is no longer a fact!
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vampeyes-not a magic pill but there’s a magic shot!
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I would think 7 years might be a good number. Don't 100% of your cells turn over every 7 years?
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The 10 year recommendation is the result of some research published this year (which, of course, I can't locate just now). The section on Tamoxifen on the main site has been updated to reflect that. Will meet with my Tamoxifen prescriber in a couple of weeks and the 5 or10 years are on my agenda for discussion!
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part of the reason for the 5 year 10 year (and expect to see 15 and 20 year data down the road) has to do with time. Time to get the study approved (6-12 months), time to get funding (6-24 months), time to recruit (12 months), then the time the study takes from the time the last patient is enrolled (5 years), then time to process the data (3-9 months), time to get the data written up for a journal (3-12 months), time for journal application review and assigning a journal issue to print it in (3-12 months), time til publication (3-6 months), time for at least 1 other group to repeat the study with similar results (so repeat the steps & time before and after this), time til mainstream MOs read it (1-12 months), vet it and agree it’s good science (1-??? Months). That’s a lot of time!
5 years because that’s the typical remission gold standard to call the patient cured. We know that’s not always true for BC. So let’s double the time on therapy to 10years and see what happens since we know BC is a sneaky bitch and see what happens. Why not 7 years? We never know when 7 years of having every single last cancer cell eradicated/removed starts. Why 15 and 20 year data? More younger women need answers. I like to think I’ve got at least another 40 years in me! I need that data. As long as the longer term shows clinically and statistically significant difference in recurrence/survival rates the recommendation on length of time to take these meds will increase and likely will have an age component to them. A 30-40 year old woman may be looking at 20-30 years of therapy and a 60 year old woman may only be looking at 10 (this takes into account less aggressive cancer, longer recommendations may be made for more aggressive ones)
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I just got caught up reading your posts after missing about a month of being here. Tamoxifen continues to change its side effects. My memory is shot. I can't concentrate. Last week my hair was shedding again. My bathroom sink looked like it was growing hair and my scalp is getting shiny in patchy areas. My Oncologist sent me to see a neurologist because of my memory and concentration issues. Today, I had an MRI of my brain. I really think the issues are caused by a combination of Tamoxifen & Hypo issues due to Thyroid Cancer. Monday I have another mammogram and I am stressing . I am wondering if it would be a good idea to take a break from Tamoxifen and see if my concentration returns to normal? Having more than one health issue surely makes decision making harder. I REALLY wish I could stop all my meds
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I have been on Tamoxifen since February and the hot flashes and sweats have been horrible, add an extremely hot and humid summer and it is a recipe for pure misery. I saw an NP in the MO's office in May and she was totally useless, she told me to call if I decided to stop the Tamoxifen and mentioned acupuncture and wad supposed to call me to let me know if my insurance approved it she'd let me know where I could go for it... she never called, I called her and had to leave a message, she never called back. I called her again, still no call back. I had a follow up with my PCP (who I love) and told her what was going on and she did some research and we tried a couple things, the most recent is Gabapentin and I am thrilled to finally find something that helps. I still have hot flashes and sweats but not constantly, i do not feel nauseous and like I am about to pass out in the heat like before, it may not work for everyone but it is worth a shot for anyone whose quality of life is severely effected by hot flashes and sweats. I still sweat lots with activity but away least it doesn't feel like I am on fire all the time.
Dawn
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dawn, you may want to pursue a course of acupuncture. I'm taking a class offered by our breast cancer coalition and their research is showing good results with acvupuncture.. most places will do a sliding scale for payment.
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ThreeC- memory and concentration issues are common side effects of tamoxifen and AIs. When I was on tamoxifen I couldn't concentrate, couldn't remember the next word in a sentence, it was like I was in a thick dense fog all the time, and forget remembering anything. It's much better on letrozole but still not perfect. I had a nearly idacticmemory before BC so this is a huge change. I tried a supplement called Irwin Organics Brain Supplement. It worked well for the brain issues but it didn’t play well with my IBS (it has some digestive health something or other in it too) so I had to stop taking it. It may help you though. https://www.amazon.com/Irwin-Naturals-Organic-Support-Supplement/dp/B003WQMO5S
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Lula74, Thanks for your response. A pea soup fog is just what I feel like I'm trying to wade through. My stock in trade was words/verbiage. Now I feel at a loss for words at times. I started on Letrozole but the bone/muscle pain was horrid and I have osteopenia. Next they put me on Tamoxifen. My pain level is much better, but the concentration, word issues are horrible. I'll check out the Irwins to see if I can tell if I can take it with my other meds. There are so many things I can't take with my Thyroid replacement hormones. Loss of concentration/memory is soooo... frustrating. Thanks again for your help!
Barbara
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ThreeC-I take 175mcg of synthroid daily and have for 13 years. No issues with the Irwin’s from that aspect. The biggest thing I’ve found that affects the synthroid is making sure you take it at roughly the same time everyday and the same way (without food every time or with food every time) so that when they pull the levels you haven’t been all over the place causing them to be off then the doc is adjusting based on inaccurate results.
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**Update on Intrarosa Use **
I’ve used the Intrarosa off and on for the last 4 weeks give or take. Off and on because a whole suppository makes me have horrible IBS cramping about 12-16 hours later and I end up in the bathroom for hours. And it takes a few days to recover (yes it’s that bad for me). Since it’s working in that tight area of tissue that includes urethra and rectum/intestines it makes sense (i had this issue when i would get my period too). So I cut them in 1/2 and used 1/2 of one religiously for about 10 nights, then none for the last 7 (life has been very busy and crazy and once I hit the bed that’s it I’m not getting back up) First trial for sex with DH at day 8 of taking 1/2 was ok. More comfortable than before but still not pain free especially on the top wall of the vagina. Still used LOTS of coconut oil. Everyday discomfort was completely resolved though. Fast forward to this morning and DH and I got frisky and everything worked as it should! No pain, only pleasure, achieved the big O relatively easy, and no lube required either. He’s happy, I’m happy, things are good again! I will restart 1/2 a dose as soon as i start to feel any discomfort moving forward. I can easily see doing a 7-10 day stint every month or every other month to keep things healthy and comfortable.
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