Bottle o Tamoxifen
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I have had terrible CIPN since chemo ended 2 years ago. The pain in my legs has gotten steadily worse, especially at night. I began to suspect the Tamoxifen. Onc at DFCI said leg pain was not a side effect of T. I went off the Tamoxifen 17 days ago. Considerable improvement. I guess I am headed over to the world of AIs. If major side effects continue, then I am done.
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garden, if arimidex or femara are difficult, aromasin uses a different mechanism which many have found to be easier. I hope it works out. Stage 3 is scarier to me at least. Gl
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I just noticed this paragraph in Beesie's comprehensive info post on DCIS:
UPDATED - Tamoxifen is currently the only endocrine therapy approved for women who've had DCIS. For women with invasive cancer, while Tamoxifen is given to pre-menopausal women, post-menopausal women often are prescribed an Aromatase Inhibitor (either Arimidex or Aromasin or Femara). Aromatase Inhibitors (AIs) are not yet approved for women who've had DCIS. Recent studies have however shown that the AIs may be more effective than Tamoxifen at reducing recurrence. Based on this, and in anticipation of the approval of AIs for women with DCIS, the 2016 NCCN Guidelines now indicate that post-menopausal women with DCIS may choose to take either Tamoxifen or an AI. The guidelines note that there may be some advantage for aromatase inhibitor therapy in patients <60 years old or those who have concerns about thromboembolism.
Has this been updated by the NCCN since 2016?
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rgoosen, speaking for myself, I found that magnesium helped when I was feeling achy. Also magnesium helps in general for improving sleep and reducing anxiety. I take 200 mg of this brand every night:
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mellee, thank you for your response. I just started taking tamoxifen yesterday, does it take awhile for the magnesium to build up in your body to help with aches and sleep?
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Rgoossen - I noticed my sleep was SO much better after taking magnesium for about a week.
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had to quit my Tamoxifen after 9 days. The side effects we're so severe I couldn't walk and after 3 weeks my right hand is still useless. Going to physical therapy and on pain meds. My quality of life was non existent. Couldn't even think. Pain was so bad I couldn't roll over in bed with out waking. My symptoms did not go away when I quit taking it. Just had a bone scan, it was clean. So happy about that. I now have arthritis in my neck and back that wasn't there before. That's a chemo S.E. but the Tamoxifen really kicked it up a notch. Due to low quality of life, onc. Agreed I would have as much success being able to walk and exercise and have good mental health. So I'm going with a very controlled diet, exercise, good mental health. Better for my type 1 diabetes. So, I'm going to take joy in the fact I can walk again and have some mental clarity. Sending comfort and hope and peace to all.
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rgoossen, I've been taking magnesium regularly for so long that I don't remember if it first built up to an optimal level or not. I don't think so. I do know that after taking it you get the calming and/or muscle & joint pain relief within about 30 minutes or so. Also, it's safe to take more if you need. I used to take an additional 200 mg when I'd wake up in the middle of the night feeling particularly achy.
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I take 500 mg magnesium every night for (TMI) constipation. It does nothing for the bone pain or joint problems I have from Tamoxifen. I gave myself a 3 month break from Tamoxifen even though I am 95% ER. The hot flashes did not go away (that appears to be just me and menopause). After starting back up, the bone pain increased, my elbows are extremely painful and weak but the most disheartening s/e is that my already thin hair continues to shed at an alarming rate even after 2 months of being back on Tamoxifen....aaarrrggg
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I’m on a 30 day break from tamoxifen and haven’t felt this good in 2 years!!! I was having chest pains and shortness of breath. MO ordered EKG and was fine. Had mri and ultrasound of liver a few months ago because of high liver enzymes and now have fatty liver. My liver enzymes went down 10 points after being off of it for only 2 weeks. Problems I’ve had on tamoxifen : dry, brittle hair that falls out horribly, no feeling in my private area, dry itchy rash between my fingers, hot flashes from heck, severe insomnia that no medicines help, 25 lb weight gain, hair growing on my face, feeling like crap 24 hours a day, blurry vision with vision decrease along with brain fog, leg cramps and hip with back pain. Meds I take to help with side effects: vitamin d, magnesium glycinate, calcium, turmeric, aspirin and Effexor
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Lovinggrouches - when you go back on Tamoxifen will you try a different brand? I have been off for 10 days now and I feel soooo much better. A little arthritic pain going on in my wrist and back, but other than that I feel pretty good. I can breath!!!!! I was contemplating a different brand when/if I go back on it.
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yes, different manufacturers can make a big difference. I use mylan and while ses, they are doable.
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I’ve never paid attention to the brand. I will look into it
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Lovinggrouches, in what ways are you feeling better after a few weeks without tamoxifen? Are you sleeping better? Any other specific improvements?
You should definitely try a different brand. Two times in my seven years of tamoxifen my brand was changed, and I had greatly increased joint pain after about a month. Watson, now Activis, is best for me, though others seem to prefer other brands.
I'm considering a 30 to 60 day break if not stopping completely. I'd like to see how I feel without my numerous se's. Doctors appointments in next two weeks.
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It’s great that I don’t feel like crap with the extreme fatigue so bad. My hip pain is much improved, sleep still sucks but that is probably because of having ovaries out also. My urine also doesn’t smell as bad and I have some feeling back in my private areas. I will look into the brand thing, but I think the elevated liver enzymes had a lot to do with my feeling bad also and at least it went down som
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I've been on Tamoxifen for about 9 weeks now and some of my SE's line up with you and some don't! I guess it is so individual like most other things, but I'm feeling like I'm dodging a big bullet so far...Early on I had daily headaches which were tough. Now I have a couple per week but my new best friend is Excedrin Migraine (which also contains aspirin, so no need for an extra dose of baby aspirin). My last period was 9 days late and I am due to start any minute but we'll see if it happens. Definitely having joint pain, especially in my feet, right knee, and hands. I feel very sleepy and tired in the afternoons and have NO problem falling asleep at night. It's like I crave sleep. Hair falling out more than usual. Absolutely no sex drive but able to respond if DH makes the move. No change in appetite but have shed 7 lbs so far on a high protein/lots of veggies diet modification. I'm taking 4,000u VitD, and a Fe and Ca/Mg supplement with my T at night. No hot flashes (thank God!) or feeling cold. Able to work full time no problem but I'm beat when I get home. Is anyone else's husband resentful that we're not 100% like we used to be? Mine is starting to complain A LOT about me not pulling my load (not his words). We also have growing tweens who need to learn to do more for themselves and so they are doing more around the house (of course they don't do it as well as I would but it's not like it is a disaster - I am proud of them and these are good life skills). For him, it's like the BC thing is "over" now so I must just be lazy. This is becoming a problem. For the first time I am actually trying to pay attention to my body and what it tells me, and I really don't care if something that does not matter gets delayed or needs to be redone to a higher standard. I'm trying not to let his attitude get me down but this is not cool.
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Seen my GP today, he went over all tests with me. Unlike the MO who doesn't even have a file on me! Anyway no clot, something was there, they just don't know what... strange. My GP said could be mets on its way to somewhere else - awesome {insert scarcasm} No bone mets, it is arthritis, appatently the two glow differently on the bone scan. For now essential oils and Robax Platinum for the pain. GP also wrote me a script for name brand Tamoxifen - no substitutions. Picked it up today and will start tomorrow. I sure hope the SEs are better than the last one! Going to see a naturalpath on Friday for his thoughts on all this.
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be careful what natural stuff you are doing doesn't interfere with tamoxifen. I believe there is talk on this somewhere her.
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re Tamoxifen--my drug guide specifies to avoid St. John's wort, dong quai and black cohosh.
Hope this is helpful.
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Hi fellow Tamoxifen recipients, I started my doses on May 1 after weening off antidepressants and am having insomnia, hot flashes (the AC bill for summer in Texas is going to be high with these) and pain/cramps on the backs of my legs. A coworker suggested Nuun electrolytes tablets. Anyone used those? Know of any problems? I have also heard Effexor might help. Any one tried that? Already having a banana daily plus drinking more water than I thought feasible. Thanks,
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Vampeyes, what do you mean by name brand tamoxifen? I've been advised there is no longer a non-generic tamoxifen.
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AnnN - I am in Canada, not sure if that makes a difference. I received Nalvadex D - Tamoxifen Citrate, came in a box and I punch the pills out of the foil package.
Beverntx and Rosabella - thank you for bringing that to my attention about herbs and Tamoxifen.
Took the first one today - I am hoping for the weight loss and no more period SEs.
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pollifax, i take effexor and it helps a lot. I would have 1 long all day hot flash. Now i have maybe 1 small one a day.
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Sorry again for delay. Natural Calm is magnesium Citrate. it is supposed to help with sleep, and supposedly hot flashes as well. Also joint pain.
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Is anyone here only weakly ER+ and nevertheless taking tamoxifen?
My core biopsy came back 10% ER+ Allred 4/8 but Oncotype puts me as triple neg. We're trying to make the decision regarding tamoxifen.
My MO is currently leaning against, thinking it will do more harm than good.0 -
Moth - *hand up* I was 15%, MO referred to it as just squeeking by into ER+. Actually she said that 15% was the lowest before being declared TN. She seemed pleased and stated that it was good news as I could take Tamoxifen (not so sure of that lol). Seriously thought I’ve often wondered if it’s doing more harm than good too. I’d be interested to see what you decide, or find out about the whole quandry. Sorry I have no further input.
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Hi Ladies,
Has anyone suffered from chronic tension type headaches and neck pain while on Tamo? I’m 5 months in and feel worse now than I did twhen I started the medication. Have been working with various docs to find something to ward off the side effect but would like to know if anyone else is having a similar issue and if it eventually went away. Thanks
DJohns.
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Oh great...I have noticed my first SE's 6 days since starting tamoxifen. Last night around 7 pm I developed ringing in my left ear and it is still ringing today. I also noticed my legs seemed restless last night while I was trying to sleep. Praying for these to subside sooner than latter.
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yeah you just don't know if ses will subsid later on. Im coming up on 2 years of T in a month minus trying letrozole for 5 last year. Started with my uterine fibroids cramping, warm daily flushes, fatigue and some joint pain. Now fatigue is same, i have days of 0 warm flushes and I'm menopausal, cramping gone and only knuckles on right hand can have pain on flexion. So for me it's gotten better. But im a high risk and cant do the ai so im on the min 10 year plan. I was diagnosed in 2015 4 mo before turning 51.
Ses or new ones can crop up at anytime but im determined to cope.
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djohns- You had rads, right? Have you tried PT? I know the tightness in my shoulder was starting to affect my neck and cause headaches. They went away soon after I started PT. I hope you find relief!
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