Bottle 'o Tamoxifen

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.

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.

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!

Moth - Hiya! Ugggg is right, it’s one helluva decision, freedom from tamox and possible negatives with small risk factor vs reoccurrence and kicking my butt for not sucking it up and taking the med. I’m facing this in December when they want to switch me up to an AL. I’m planning on an in-depth with my MO beforehand. If the numbers/benefits are in my favour I’ll go for it, if not I’m not sure that I won’t chicken out and do 5 more years of ‘hard time’ anyway.So much easier in the beginning when I was startlingly and blissfully ignorant....took my pills like a good girl without question. Information is power, and also a biotch when it comes down to the crunch, arrrrrg! Keep me posted on your situation please!

I've been on tamoxifen since November and for tge passed few weeks ive started having night sweats and now im having hot flash and seem to be getting worse. Is it normal to have night sweats and hot flashes like 6 months into taking tamoxifen? Thank you so much Ladies😇💕

Thank you so much Lula73 yes that helps alot put my mind at rest.

Day 3 on different Tamoxifen brand. Breathing is becoming difficult again, bloated and muscle fatigue. Couldn't even lift the garbage bag into the bin! I won't give up just yet, but its not looking promising for me.

vampeyes- you have been round & round with this. The difficulty breathing again is not good. I would call your GP. Or see if you can get in with a pulmonologist. Sending hugs your way (((Hugs)))

CPeachymom and Lula,

Hi Ladies - Thanks for the input. I started PT a few weeks ago for ROM issues. Turns out rads did a number on my tissues so 4 months out my surgery side started getting really tight again. In any case I had my therapist do some work on my neck but it caused a flare up. I have also been doing acupuncture for several months for headaches but the neck pain and stiffness began a few weeks ago so is relative new so maybe I need to have more frequent and targeted sessions. Also realized that the neck issues seem to have coincided with me starting nortriptyline. I contacted my doctor but she said that the medication would not cause this so I am left scratching my head. Planning to discontinue for a bit to see if any relief. Also requesting imaging to make sure nothing is missed.

Will keep posted on progress, and hoping there will be progress.

Well it said weight lost or gain. I gained 6 pounds in 3 months. Already went through menopause? Well that old friend will be visiting. I am told that means it is working if you are having your hot flashes and night sweats. Also, only take 1/4 of a melatonin (anymore works against tamoxifen and you will not be able to stay asleep). Beware of soy. These are things that I have found out along the way. Make sure you take it the same time each day. I get tired during the middle of the day at work and I feel more fatigued during the day. Hair seems thinner. It is not all bad. I feel it is doing the job it was meant to do.

Vampeyes- I'm 65, went through Menopause in my late 30's. The first few months on Tamoxifen I was miserable with hot flashes. It was so bad, I was changing my clothes several times a day. Now that is gone- I have developed severe exhaustion & dizziness. These hormone blockers are unpredictable with side effects.

Ive been on Tamox since last Sept. , and was still regularly getting periods. Only recently started with hot flashes and missed last two periods. I'm going on 52 so I don't know whether it is the Tamox of menopause. I agree that just because you don't get hot flashes it doesnt means it's not working. Everyone reacts differently.

Beach2beach, I was 53 when I started taking tamox. Having regular periods and no hot flashes, menopause was nowhere in sight. I have not had a period, or drizzle or anything since I started tamox. But I do have regular hot flashes, night sweats, blinding leg cramps in bed, thinning hair, memory loss and the odd moment of homicidal ideation directed at my dear husband. But that last part is because he does annoying things and maybe can't be blamed on tamox. I don't know. But my periods stopped dead in their tracks. My last period was July 2017. Started taking tamox two weeks later start of August and bzzzt, periods gone! If they suddenly come back I'll be so pissed off.

TaRenee - my naturalpath has recommended that I take 10mg of melatonin for 3-4 days, then 15mg for 3-4 days, increasing by 5 until a max of 25mg. He sent home a printout called Mechanism of Melatonin in oncology, unfortunately it's difficult to read because it printed badly. I can see the Conclusion and here is what it states:

Melatonin truly is a great multi-tasker. Its many actions include immune modulation, antioxidant, anti-inflammatory, anti-angiogenic, anti-metastatic, anti-proliferative and pro-apoptotic. In addition it has the ability to modify gene expression, reduce side effects of radio chemotherapy and improve response rates to radio chemotherapy. Whereas the molecular mechanisms reviewed in this article are by no means exhaustive, this article is meant to ignite a level of excitement about an impressive supplement for anyone interested in naturopathic oncology.

I will have to search the internet for this article so I can better read it. Hope it helps in your decision to take it.

TaRenee, those cramps are not funny. I've had a few that must inflict some type of permanent damage, because the pain and change in leg function lingers for days. At the first sign of one coming I leap out of bed and try to hobble around. Often I can't even stand up straight because the leg is so seized up I'm bent over in agony. But moving for me has always helped it faster than laying in bed. Still, not fast enough! I feel for you. I think these can't even be called cramps anymore. They are ... muscle murder.