Bottle o Tamoxifen
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Egads - hi! Ugh, I'm not liking having to make this decision. My MO is still mulling and conferring with colleagues - including the pathology team - & I'm hoping they'll actually give a recommendation at some point rather than just sort of shrugging and saying hmmmmmmm....
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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!
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djohn- have you tried acupuncture? It helped me a lot with the chronic tension in my upper back, shoulders and neck as well as the resulting headaches.
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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😇💕
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Robin- yep, it sure is. The thing about tamoxifen is it has a really long half life (about 6 days). While it’s only 20mg tablet, it builds up in your bloodstream everyday. So let’s say we just look at the first week of tamoxifen therapy, the amount in your system each day:
Day 1 = 20mg
Day 2 = 36.5mg
Day 3 = 52mg
Day 4 = 66mg
Day 5 = 79mg
Day 6 = 90.5mg
So everyday it goes higher. That means you likely won’t have side effects right away but they can and often do develop over time. Additionally, your body/hypothalamus may no longer be able to compensate for the lack of estrogen (meaning it was compensating before). Hot flashes happen when the hypothalamus incorrectly senses a change in your body temperature regulation and “thinks” you’re too hot. The hypothalamus begins a cascade of various chemicals and hormones to dilate the blood vessels close to the skin surface to help dissipate the (non-existent) extra heat. Since we really weren’t hot to begin with, we feel that heat dissipation from the time it starts til it stops, where if we were actually hot we wouldn’t likely notice it at all. Hope this helps!
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Thank you so much Lula73 yes that helps alot put my mind at rest.
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Loving G- I have been off for a month and feel incredible. I still have the neuropathy, but it is so much better.
Since I am post-menopausal, I am starting Arimidex today. If pain in legs is severe or other side effects are intolerable, I am done with pharmaceuticals.
Heading over to another thread now...BLESSINGS TO YOU ALL.
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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.
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garden, if arimidex isnt tolerable, try aromasin before you quit. Its uses different ways than the other 2 and many while find arimidex and femara intolerable, they do aromasin.
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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)))
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Thanks Lula. 💞
Met with my old Naturalpath today, couldn't afford it years ago so I stopped going. He told me that if his mother needed Tamoxifen he would tell her to take it and throw everything he could at it to help with the side effects. He talked about a herb formula he made that rids the body of extra estrogen and siberian rhubarb to help manage ther SEs. That was just for staters. He also mentioned mistletoe to boost quality of life and decrees SEs of medication and radiation. As well as MCP (modified citrus pectin) to boost immune system and immune sensory against rogue cancer cancer cells spreading.
All that sounds great except the cost. For two weeks I have to take my temperature (He's checking my thyroid), list all I eat (tomorrow was a good day to starr that diet), increase magnesium and start drinking ox tail bone broth.
As for arthritis and bone mets he says they can't tell the difference on a scan especially if it's small. Hopefully I have my hospital records by my next visit with him.
Have a wonderful long weekend my American friends! 🎆🎇✨
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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.
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I am 21 years old and this year was diagnosed with ADH after a needle biopsy and eventually excisional biopsy of 3 lumps. My oncologist recomended Tamoxifen to me but I am worried to take it because of my young age. Should I be worried? Or is it something I could definitely take over getting a Bilateral mastectomy? I have a family history and am currently waiting for genetic test results.
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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.
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Is it weird I am not having hot flashes? Although the breathing issue, back and chest pain is back.... lovely.
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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.
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side effects does not mean it's working. Not everyone has ses.
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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.
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So does Melatonin work against the Tamoxifen? I take it nightly and it’s a rather high dosage for me. (Sleep has not been my friend since diagnosis and even worse since starting Tamoxifen) ughhhhh
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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.
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TaRenee, I thought I had read that the therapeutic dose of melatonin with regard to breast cancer was 20 mg. I will have to research again.
Runor, tamoxifen regulated my periods to be the length I had in my youth. That part has been wonderful. I could do without the PMS which has been pretty brutal.
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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.
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Thanks Vampeyes. I am taking 20 mg pretty regularly. Maybe I will up it to 25 and take it daily and see if it helps.
Anyone have suggestions for leg cramps. Not little ones. Massive, make you cry because it’s your toes to your butt, leg cramps? I’m taking magnesium now but tonight I had one for almost 2 hours. I thought I was going to die.
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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.
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Runor and TaRenee - stupid question, but I had them early this week and was able to stop it from getting to bad by pointing my toes up. I can't prove it, but doing Yoga seems to be helping. Here is a link to a woman I found that has a tone of different videos, some for beginners like me! https://www.youtube.com/channel/UCFKE7WVJfvaHW5q28... Yoga seems to be helping with the cording/tightening from RADS too.
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I miss doing Yoga. My leader quit teaching and I haven’t found any classes I like. I will sure try the video. I’ll try anything to stop the leg cramps.
Runor, muscle murder is a lot more realistic than leg cramps! I still am not walking right this morning!
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i should try yoga, a friend teaches it and has invited me many times, just never thought I would like it.
Maybe this had been brought up before.. Anyone experiencing bruising easily? I never used to bruise easy and now it seems like all i have todi it touch my legs and i get a huge bruise.
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I've read that Tamoxifen can lower your platlet levels slightly, which could impact bruising...
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I see my MO for the first time tomorrow since starting Tamoxifen. The hot flashes are still keeping me up at night, which we will discuss.
About a month ago I had tingling in my face that lasted three days then vanished. About a month later, it came back. Today is day three and it it less. It starts on the right side cheek and nose, but then moves around - scalp, chin etc. It terrifies me because my first thought is that it is brain mets, which I know is probably unlikely, but the fear is real I did read that tingling of the face is a symptom of menopause for some. I also have horrible seasonal allergies which may be contributing.
Anyone else have this experience?
Thanks
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shelabela- interesting. I’ve had more bruises recently and chalked it up to some heavy yard work. But I definitely am bruising more easily and they seem to last longer.
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