Bottle 'o Tamoxifen

MexicoHeather

Hi everyone. I started Tamoxifen July 3rd. There were some SEs, but what I really noticed was vaginal thinning. This compounded pelvic floor muscle weakness from chemo. I was falling apart! The Gynecologist has been THE good person with the best advice, not the oncologist.

To make it short: 1) Had pelvic floor physical therapy for 6 weeks, then a 2) total vaginal hysterectomy and 3) the ovaries and tubes removed 4) put in a urethral sling.

Result: I can switch to an AI in 2018. The Gyno says he is so happy that I will not have to think about thickening uterine walls or ovarian cancer. Basically I told estrogen that it's not my friend! And I can jump up and down about that and not pee my pants! Hahaha

shelabela

just over 3 weeks since I've started Tamoxifen, has anyone else had vaginal discharge? There are times I feel like I peed myself. Calling my MO today just thought I'd get others input

TWills

Sheabela,I have read many times that can be a side effect. I've got an appt later today to see my MO and get my script:/ Mixed feeling I supposed, I'm thankful it's an option though.

Trvler

I was told vaginal discharge was a side effect but I haven't really had it.

Jen: I am having problems with my cancer side shoulder and I think it is because of a combination of scoliosis, scar tissue from having 2 nodes removed in my armpit and the tamoxifen. I think I have lifted weights incorrectly to compensate for the muscle cramps I get from the tamoxifen. I am in physical therapy now. Frozen shoulder is very common in mastectomy patients. As your doctor about PT.

lala1

Maui Jen--I've decided it has something to do with the surgery. I'm thinking that we get so "tight" in our back and shoulders and then develop these other issues. My BS told me from the start to make sure I stretch in the doorway every day. He said we have a tendency to hunch over after surgery (a protective thing) and stretching will help. I've also had massages and been told my muscles were more knotted up that most of the people they treated! And then I think Tamoxifen exacerbates these things. Anyway, those are just my thoughts so I think I'm going to get a script for PT, try a massage and then get a personal training session at the gym to see if I'm lifting weights wrong like Trvler suggested. Surely one of those things will help!!

Legomaster225

Shelabela, I have vaginal discharge as well. I have not needed even a panty liner since last January when I started chemo but have started using them again since I started tsmoxifen. It is clear and thin with no odor so I just chalked it up to the tamoxifen. I see my MO in a couple weeks and my GYN in a month I thought I would just ask then.

My shoulders are stiff sometimes as well. Mostly when I try to reach behind me. I have just been stretching and it seems to make a difference. PT is a good idea Trvler andLala.

runor

I noticed a lot more gunk in my gonch too. And pee dribble. This is all so appealing.

I have a small home business making and selling washable, fabric feminine pads and one of the things I make is called a wedgie. It is smooth cotton on one side, flannel on the other, quilted with a layer of batting in the middle. I wear these instead of panty liners. The batting seems to hold a little bit of air which makes me feel more comfortable than a gummy pair of panties stuck to me. They also help contains TINY amounts of bladder leaks. I have been contacted about pads for heavy bladder leaks and I do not suggest any of my products as suitable for heavy bladder leaking.

If you have any sewing skills at all it is a no brainer to make a few fabric liners to use in your panties. So much more comfortable than paper or plastic products! I'm giving away a trade secret here, but I TAPE mine in place with two short pieces of medical tape, one at each side of crotch, wrap around to underside of panty. Unlike other pad makers who are all about wings and snaps, I say no way to that, too bulky! So I use my own adhesive in the form of medical tape. Simply wash the fabric wedgie (pantyliner) by hand, hang to dry, you're good to go. I do not get irritated and raw like I do with store panty liners.

Anyone with basic sewing skills can accomplish this. But for those who don't have the interest or time, this is a side business of mine. But the thrust of this post is that ANYONE can make their own. Honest! You can do it!

beach2beach

Almost 2months on tamoxifen and the discharge has lessened for me. Hopefully it stays that way. My period in Oct was uber heavy the first 2 days..so not like me, then 3day..*poof*..down to a slight stain for another 3 days. No idea if thats the way it will stay or if my periods will eventually stop. I'm guessing it takes a few weeks to months to see if there are side effects and hopefully they subside during treatment for us.

runor

Tamoxifen stopped my periods dead in their tracks. I was having regular periods. Boom. Over. Next!

Catkin

I had a whitish vaginal discharge for the first year and a half or so. Now at 2 years it seems to have mostly stopped.

Also It took Tamoxifen only 2 months to stop my periods ,though I had 1 single solitary period after 1 year (they checked my uterus lining with a hysteroscopy to check it was normal, which it was). I was already perimenapausal and 49 years old at the time so I was not surprised.

shelabela

chemo stopped my periods in February and they have not started again. I did spot a very little bit after starting tamoxifen but it only lasted about 1 day

Maui-Jen

Yes! My neck and shoulders are so very tight. I've a headache for over 2 weeks. My onco wants me to get a brain MRI to rule out any cancer spread because I also have weakness in my hands and my oncotype dx score was so high. I really think the headaches are from tight muscles but she wants to make sure it hasn't spread. I still have TEs, and my PS said I can't have an MRI since TEs have metal. I think I'll take this time to get a deep tissue massage to see if that helps with the headaches and possibly the shoulder pain. I see my PS on Tuesday and will ask about PT.

ML1209

Mexicoheather - so excited to hear about your great results with the pelvic floor PT! I never even knew they existed until recently. One came to talk to our ABC (After Breast Cancer) group at the YMCA. Amazing what they can do! I will be making my appt . My MO wants me to have my ovaries removed so I can switch to AI's. Not sure what I will do. I am not havning really bad SE on tamoxifen, so sorta scared to switch - I have talked with several ladies who have issues on the AI"s.

Maui - Jen - I think the tamoxifen can cause HA's. I have been having more as well, but when I took a break from the Tamoxifen - completely went away. Do you have a LE therapist? Mine has helped so much in teachng excercises to keep things from getting so tight. She also suggested a deep tissue massage/ I would ask to take a little break from it and see what happens before I had an MRI. I know they have to watch every little sneeze though.

Trvler

Should pain is common in mastectomy patients. It's call frozen shoulder. I had it and I am in PT for it now. It is making a huge improvement after only 3 weeks.

Trvler

I have a question. Is anyone taking a daily aspirin due to the risk of blood clotting on Tamoxifen? I know I am not but it seems like a good idea?

lala1

Trvler---I'm on a baby aspirin to keep from getting clots. I've never had one but my MO started me on it the day I started Tamoxifen. He originally had me do daily but I kept getting bad bruising (even getting one by resting my chin in my hand!) so he's cut me back to 2 a week. He feels this does just as much good as daily.

Also, my shoulder pain is actually on my opposite side, the one that I didn't have a mastectomy on. I'm really starting to wonder is it's my purse and/or gym bag. Both of which I keep way too much s**t in.....

Tpralph

Tryler I'm to start low dose Asa with Tamoxifen. I had a blood clot around my PICC line when I was having chemo so I figure I'm prone to them

EastcoastTS

I'm taking daily aspirin. What we used to call "baby" aspirin.

SpeedyTeach

Hi All,

This is my first post here. I will be starting tamoxifen on Tuesday November the 14th. Monday I am having my port removed so my MO wants me to wait until Tuesday to start.

Long story but even though my information shows triple negative my tumor actually came back as having two types of cancer. The majority of it was made up of triple negative cells but a very small area was made up of estrogen positive cells. My BS said they see that from time to time and call it heterogeneous (or something like that). My original biopsy came back as 30% ER+ but when I had my Oncotype done it came back Triple Negative with a score of 58. The breast center retested my tumor and thus the reason they found out my tumor was actually made up mostly of triple negative cells.

So my treatment to this point has been hitting my body like my cancer was triple negative. Now that this treatment is complete they want me to try tamoxifen. I am premenopausal, but they don't feel the side effects of an AI would be worth the very small percentage that it would help the small percentage of estrogen that made up my tumor. My MO feels that if I do ok SE wise with tamoxifen that I should give it a try as an added layer of protection. So that is what I am doing, giving it a try and if the SE's are too bad will discontinue it. Unfortunately they say there isn't a ton of research on how much it will help my type of cancer but also want to try and hopefully it will keep any estrogen cancer cells though small % from coming back.

Has anyone else experienced this? I'm just wondering if it's going to be worth taking tamoxifen or not. Part of me wants to do whatever it takes to prevent it from coming back, but even my MO can't say whether or not tamoxifen will do that. She just says that her recommendation is to try it and I can't handle the SE's then discontinue. Ugh-this has been the only part of my plan that I haven't been 100% sure about.

AnnainMontana

Hi, I started Tamoxifen 10 days ago and I have been having nausea. I take tamoxifen in the morning along with prilosec and vitamin D3. Does the nausea go away after awhile or should I do something different like take the tamoxifen in the evening. Any suggestions would help. It feels like I am having morning sickness which would suck to have for 5 years

Legomaster225

Anna, I take mine at night and have not noticed nausea. Maybe I sleep through it (although I don’t sleep very well these days). Maybe it’s the combination that is upsetting your stomach? Might be worth a try to take it at night.

beach2beach

My oncologist did not suggest it, but I take a baby one every other day.

runor

Anna, I am finding that some of the side effects are easing off after a while. The leg cramps at night have pretty much disappeared, thankfully. Other side effects, well those are getting worse. Let's face it. To take a pill that blocks our body from getting the needed female hormones is going to have some effects! I take my half a pill every morning with coffee. Probably not the best idea.

lala1

AnnainMontana--I had off an on nausea for about a year after starting Tamoxifen. Like morning sickness was also how I described it! It wasn't until I started taking a really good, refrigerated probiotic from The Vitamin Shoppe that I got rid of it.

TaRenee

Annainmontana I take my Tamoxifen at night. I haven’t had any nausea. I also take 2 Tums at night (my MO suggested that for the calcium) and that may be one reason I don’t get nauseous. Also, make sure you are drinking a lot of water. Staying hydrated is key for keeping the leg cramps at bay. Also, taking it at night gives the added benefit of being well hydrated from the day rather than missing that over night and taking it in the morning. I’ve been on mine about 5 weeks now and I’m doing ok so far

Trvler

I agree about staying hydrated to avoid cramps.

I have to say, I am quite please that my cramps have virtually almost completely stopped and my PT has increased my mobility a lot. I was all but about to stop taking Tamoxifen. Still working on sleep but I think the hot flashes are noticeably fewer and less severe when I workout.

T-Sue

Trvler, my MO recommended taking a baby aspririn along with Tamox to reduce blood clot risks. I've also noticed increased bruising, so I may check with her to see about reducing it to every other day.

TaRenee

Trvler the sleeplessness is getting to me. I sleep for a few hours then wake up. Sometimes for no reason, other times I’m all hot and sweaty. I’m up already tonight. I really could use a GOOD night of sleep for once.

ndgrrl

Hi, does anyone know if Tamoxifen cause bruising? Maybe its the low dose aspirin I was put on same time Tamoxifen. I am bruising like crazy. My tummy even bruises from my pants button when I travel. My arms and legs are full of bruises.

Trvler

It's the aspirin most likely. I asked the other day if people were taking aspirin with Tamoxifen and those who said yes said bruising was a side effect.