Bottle 'o Tamoxifen

BlueGirlRedState

Runor I hope you are able to get the prescriptions you need. About 90% of Rx are generic, and most including ingredients come from China and India. Getting "helpful" advice from leaders about stocking up makes me realize just how out of touch they are. Insurance will seldom let you stock up. Sending everything over-seas/centralizing for cheaper production makes us very vulnerable to any crisis - medical, environmental, political,........

Artista928

With my profile I don't feel comfortable not taking tamoxifen. But it will be what it will be. Unfortunately unlike AIs that has 3, T is it.

Salamandra

Hey Artista,

That's only kind of true. There are actually other SERM drugs, but they are not currently approved for recurrence risk reduction in premenopausal women.

I couldn't deal with the tamoxifen side effects - I tried changing up timing, doses, brands, etc. But it was basically sedating for me. I read a lot about toremifene and asked my doctor if I could try that instead. They're doing a lot more studies of it now in China, where apparently the genetic variation that make some people less able to process tamoxifen is more common. Even though there isn't as much evidence for it as for tamoxifen, the evidence that exists is really promising.

My doc wasn't excited about it at first because she's pretty conservative and felt like OS+AI was more tried and true. It doesn't actually have any more studies than toremifene for premenopausal women, but more clinical experience. But her own senior doctor said that he had advocated to the FDA for approving toremifene for premenopausal women and then she agreed for me to try it.

I hope tamoxifen works great for you! But I feel like the misrepresentation that tamoxifen is the only option for premenopausal women is kind of dangerous actually and maybe ends up with more women going off meds for other. So I have been trying to speak up about it when I can.

So far the toremifene side effects have been completely livable for me, and I'm so relieved.

WorryThePooh

Prahan, no plantar fascitis here, but I did develop De Quervains Tenosynovitis, an inflammation of the tendon sheath in my wrist. Inflammation of tendons including tendonitis, is a fairly common side effect of Tamoxifen.I had to wear a splint on my arm for five months, along with a lot of physiotherapy but still no results, so I had a steroid injection into my wrist, which has helped but still having days when I have quite severe pain.

Apart from this 'bonus prize' of tenosynovitis which I wasn't expecting, the only side effect I get now is the hot flushes. I think the mood swings are not as bad as when I started taking it in September.

Prahan

Thanks for the reply worrythepooh.yes hot flushes side effect is somewhat tolerable.

nonomimi5

Is anyone having trouble refilling your prescription

flashlight

I just picked up 180 tabs yesterday. I take 10mg twice a day. No shortage of Tamoxifen here.

Beaverntx

I picked up my usual 90 day refill this week, no problem!

runor

I have not been able to get more than 30 tablets at a time for the past 3 refills. They are either not available or they are limiting the amount they give out.

Artista928

I'll find out tomorrow if there's a shortage here as my 90 day refill is now in process.

flashlight

runor, Could you ask your doctor to call in the 10mg tabs to see if that makes a difference?

disotte

This is the beginning of week three of tamoxifen. Was really stressed out before taking it after reading all the side effects, but so far it hasn't been too bad. Was perimenopausal when diagnosed so I was already having hot flashes, worried about the hair loss. Dry skin, from the medicine or the season? Hands and feet are really dry.

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flashlight

disotte, I take fish oil and it has really helped with my dry eyes. It does take a few weeks to work. The Tamoxifen really didn't give me dry hands/feet. I feel that is the season and washing your hands more because of the virus. Also, you have to stay hydrated while on this med.

BlueSky1969

Hi Runor;

I filled my prescription at BCCA last week, they gave me three months, at no cost. I've just jumped on this thread, and likely am missing info you posted earlier. Please ignore this post if so You can message me if you'd like me to pick up for you and drop off.

I reluctantly went back on Tamox a couple weeks ago post op. Ugh. Feel like I've been clubbed in the head, pain in hip again, and a thousand other cuts that make me fell like a complainer and a malingerer etc etc. Will try another year - the MO explained an option of medically inducing me into menopause. I'm 50, but nowhere near menopause according to bloodwork.

Rah2464

BlueSkye I was also off my tamoxifen for surgery (now postponed indefinitely due to coronavirus). I was supposed to be off it for 14 days pre surgery and one week post surgery. I was on day 10 when I got the call that my surgery was cancelled. I was just starting to really enjoy an energy surge and better sleep. I empathize with you on feeling like being clubbed in the head again. Bleh

edj3

At my MO appointment yesterday, the PA asked if I'd gone back on the tamoxifen. I told her no and that I probably wouldn't. I've had three pretty bad allergic reactions in the last couple of months (most recent was last week from my Prolia shot, ugh). And right now I feel like my body is just not going to tolerate anything else and needs a chance to get back to normal.

I'm still not interested in taking tamoxifen even after that, I told her. That heart rate spiking was dangerous--my resting pulse yesterday was 45 (normal for me, I'm a runner). Those heart rate spikes occurred within about 30 seconds of starting a run and jumped to the high 170s and 180s. NO THANKS.

Salamandra

edj3, I feel like especially for the next while, when so many medical professionals and facilities will need to be dedicated to Coronavirus care, you made the right call to stay off of it. You don't need anything that increases your chance of needing emergency care now. Or really, even anything that would need in person care if at all possible.

runor

BLuesky, thanks for the offer but I live in the interior, it would be a heck of a drive. 

lieserjp

Rah2464, My wife is suppose to have a lumpectomy at Dana Farber in Boston the first week of April. We are anxious about it being cancelled - especially since we have to travel. Do you mind me asking what they said when they cancelled yours and what type of organiztion the surgeon was with?

Rah2464

Lieserjp, the hospital cancelled the surgery. This surgery was to repair an issue with my reconstruction, so there was no life threatening component to it, just discomfort. I am sure operations to address cancer and other serious illnesses would get top priority and completed as soon as possible. I also think an outpatient procedure may have a higher chance of being completed but that is just a guess on my part. Do you have to travel far? I am so very sorry your wife is going through this journey at such an unsettling time. Please update us as to the status of your wife's surgery. Bless you both.

DVCMom3

Sorry your wife is going through this at this difficult time but please call the doctor and the hospital to make sure the surgery is still going to happen. My Surgery for another issue was cancelled and has to be done May 1 now and that is still not a definitive date according to my dr's. Take care and keep us posted.

molliefish

hair loss update: no it's not good. I continued to lose hair at an alarming rate. I spoke to my MO in December and he had no real advice to offer except to commiserate. In January I purchased some rogaine/minoxidil and started using it the last week of January. I spoke with Mumsy who is a retired nurse and decided about a month ago to reduce the tamoxifen by half again, so I am splitting a 20 mg tab and taking to ever second day. Finally for the past three days the hair loss has returned to precancer normal.

Let's hope this is the end. I have some really thin spots at temple on one side, and the crown is nearly bald. I'm able to do a comb over. I can see some tiny hairs emerging in some spots but I despair that his is the new normal.

That said. I am alive. Cancer and COVID free. My family is healthy and well. I am happy to just be.

Love to all.

OnlyGirlof5

I will take my first dose of tamoxifen tonight. I am not excited about the listed SEs but am hoping for a good response. Trying to have a positive attitude that "just because" it's listed doesn't mean I'll experience it. I have not gone through menopause yet but have been having the occasional hot flash and some vaginal dryness. I did pick up a bottle of replens in case. My husband asked what it was for and I said "to hopefully keep my vagina from turning into sandpaper." He cracked up and said they should adopt that as the new tagline on their packaging. We have tried to find the humor through this situation wherever we can

molliefish

10 days of ‘normal’ hair loss. Dare I believe in this small positive in such a turbulent time? Ya I think so. :-) I have quite a few little white guys frowing in there and with not being able to go for root touch ups I’m sure hoping to see lots more in the coming weeks. Yay for hair growth.

molliefish

after nearly a year of significant 'shedding' of my hair - I remember asking my MO to drop my tamoxifen back to 10mg in June 1019 due to hair loss and dry skin. Then again in the fall of 2019 on my last visit to the MO... more like winter it was in December... he had no advice but lots of sympathy... here we are.. April 10, into 20 days of norma hair loss... I am hopeful. With the Covid, I haven't coloured my hair since february... so i'm kind of encouraged by the tiny silver highlights growing in.. I also dropped my dosage back by half again... so i take 1/2 tablet every other day for about a month so or 5 weeks... take care everyone.

runor

Hope your hair continues to stage a comeback, Molliefish. I hear you about the dry skin!  Not that I'm dry, just old and weathered looking. I got old really fast on tamoxifen. Like, fast. 

My body hurts way more than it should. Yes I'm not young and yes I'm no athlete. But simply moving around in bed at night is an exercise in agony. I remember this was a symptom I had in the first few months on tamoxifen. It eased off but lately seems to be back with a vengeance. It seems the tamox side effects come and go in waves.

shelabela

Hi ladies,

Going on 3 years of being on Tamoxifen. And my body i have every side effect possible.

I have not found anything to help with body pain.

runor

Shelabela...the overall, unspecified, general annoying ache and creakiness. What the hell is that?!  I CANNOT believe that I could be fairly flexible and limber in 2016 and within months of starting tamox in 2017 turned into the Tinman, all my joints seized and in need of oiling. I literally have to plan the strategic moves required to bend over and put my shoes on! But where I have noticed it the most is in bed at night. Rolling over HURTS. Lumbering my unwilling and crickety body into a new position is an exercise in pain. Is this normal aging? Or accelerated aging? I don't know. But I do know what you mean about body pain. Everywhere.

molliefish

I am sorry too Runor and Shelabela. I have been fortunate to have avoided the aches, pains and stiffness, but do suffer the weird cramping at night, or pretty much any time. I can get a cramp in my diaphram or intercostal muscles bending over to tie my shoes, or in my toes putting on my socks...