Bottle o Tamoxifen
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Oh my! Now I need to charge up my Fitbit and see what happens!
So I’ve lost 5 lbs (from being sick) and I’m UNDER weight according to my doctor. Gain weight, he says. Ummmmmm hello? I’ve been small all my life. I don’t know HOW to gain weight. I eat all the time. A lot. We had hoped the weight loss wouldn’t be permanent, but two weeks later I’m still not gaining. Runor, I swear I was laughing at the butt crack thing (I teach school and the boys ALL drive me crazy with the sagging skinny jeans and the “I’m wearing shorts so you don’t see my underwear”). Today when I got home and changed clothes, I didn’t even have to unbutton the pants. They slid right down. SO of course I’m giggling about what I if that had happened at work. Maybe I should invest in a good belt
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ThreeC, thanks for the info re trazodone. I am seeing the oncologist next week and will ask her about it as well.
Egads, that is crazy re the tamoxifen and polyps. I had a d&c over a decade ago for polyps so I am thinking this might be me soon. I have a gyn appt in about 6 weeks and will ask her about it then.
Yesterday I saw the integrative oncologist at my hospital (follow-up visit). He recommended magnesium for sleep (also helps with muscle cramps). Specifically the Natural Calm powdered form. He is also recommending DHA (omega 3s) but in vegetarian (algae derived) form rather than fish oil, for inflammation. primarily preventative but also could help with some SEs, i think.
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Does Tamoxifen make you more sensitive to the sun? I’ve read through the SE’s etc and see nothing, but a few people have (annoyingly) insisted that my beach days will never be the same. Thanks.
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Teachermom, I had a bleed three days after starting tamoxifen. I was 7 years past the menopause so it was a complete shock. Turned out to be a polyp, so I guess it must have been coincidence that it happened then, but it pitched me into biopsies and I was still waiting to start rads, so I was a nervous wreck. But luckily the endometrial biopsies were okay, and the polyp hasn't regrown so far. I have an annual TVUS to check on things.
I put on about 15-20lbs in the first year of tamoxifen, and I just can't shift it in the way I used to. I'm a veteran yoyo dieter, it goes on easily but I always used to be able to shift it if I stuck to a diet. But now it's stuck round my middle and isn't going anywhere, I never used to put it on round my waist. Hips and thighs, oh yes, but not a spare tyre. So is this the start of male pattern weight distribution...not that my rear shows any signs of shrinkage yet.
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VL22
Are people getting confused with the side effects of radiation? I haven't heard of tamoxifen causing sunburn, didn't notice any difference last summer.
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VL22 your beach days are not over! - I have no problem with Tamoxifen and the sun. I started it almost 4 months ago and sat outside in my hammock on Monday for over a couple of hours in a tank top and shorts it was sunny and 70 degrees. Enjoy the beach!
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Red - hope the magnesium helps you as much as it has me! I put off taking it until this year and I’m really peeved at myself that i waited so long. Never slept better in my life! Not sure of the muscle spasms as I pretty much obliterated them by weight training...I’m sure the magnesium is not hurting though. As for inflammation, you could try cutting wheat and grains/legumes out of the diet for a test period of time. I did and it’s insane how good things are...ulcerative colitis, acid reflux, arthritis knee pain GONE. After 9 months my gastro doc said my colon has completely reversed to normal (was a mess). Can’t wait to see the results of the next bone scan!
Much luck at your gyn appointment, keep us posted
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I just have to jump in and say I LOVE my squatty potty!! Had constipation issues even with magnesium, senna, and all the other stuff I tried. It really works!!!!
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Loving - I had never heard of a squatty potty so I just googled. The whole concept makes great sense. Also looks like it works for tons of people by the reviews....which is a great thing! What I couldn’t get past without breaking into gales of laughter was the following squatty potty ad:
Royalty LOL!!!! Wonder if this model comes with a crown and sceptre!!??!
Sincerely glad it’s so good for you
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omg that is too funny
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My dad had colon cancer and suffered from an intestinal blockage - this ingenious device actually worked quite well for him. Their advertisment though is comical....
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hey did anyone have an increase in energy and have good moods on tamoxifen?
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mucki
No, sadly not! My energy levels on a good day are the same as ever, but sometimes I struggle to make myself go for a walk or do some gardening. And I had terrible mood swings and anxiety, and take an antidepressant to counter the effects.
But I think I've got away fairly lightly, compared to many. And I'm definitely grateful for the extra estrogen which gets to the ladybits, thats definitely been a plus.
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Mucki - I haven’t had increased energy or good moods since before making mortgage payments LOL! Seriously though, I got the dragged out downer moods to a large degree after starting tamoxifen. Once I got it together with a gym membership and consistently worked out with weights my SEs evaporated. Every once in a while I get a day where it feels like it’s back exhaustion) but that could be from many other things life throws at us. I can’t recommend exercise enough...I feel better than I did in my 20s now.
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Mucki, back in the 70s my mom went on a diet candy. A once a day caramel. She lost weight like crazy. She had the stamina and vigour of 10 men! She got more work done in a day than the average person does in a week! She would just FLY around doing housework, yardwork and ranching. Happy as a clam, getting stuff done. Then it was discovered that having tens of thousands of housewives taking a daily dose of methamphetamine was a bad thing, and the diet candies were pulled off the market. My mom has not been as efficient, happy or skinny since. I believe you are describing the effects of speed, not tamoxifen. Sadly, they are SO not the same.
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LOL! Love the ad for the squatty potty! My sis in law also uses it since she passes out if she strains for a bowel movement! I get to take a month break from the tamoxifen and I’m excited to see how I feel off of it since I have had FLS for the last few months - What I call feel like SH$$!!! LOL!!!! I have had shortness of breath and chest pain intermittently for the last 2 months. MO is sending me for EKG. Liver enzymes are also approaching 3 times normal. I have to text him and let him know if chest pains get better after being off of it. I increased my aspirin regimen. So excited for a month break!
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hahahaha - Mucki we all wish that were the case.
Runor now I want to risk that little diet candy! Skinny, energy and happy - OMG I would be in heaven. gimme!!! lolol
Loving you lucky girl for the break, I do hope all comes back good with the EKG. Your cough, was it all the time? Did your chest feel like you ran a mile (if you are a non runner), the burning feeling when just sitting or lying around?
Cheryl
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Good morning everyone, is anyone else having leg cramps at night? Last night I had terrible cramps in my inner thighs! I can only imagine it is from Tamoxifen because I have not done anything differently. I can still feel it this morning, my inner thighs are even sore to touch. Then after finally getting back to sleep I woke up in a pool of sweat, literally soaked the sheets! It's going to be a long day, ugh
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Mucki1991- when I first started my Tamoxifen, I felt worlds better than before I found my cancer. My energy was back, the hot flashes hadn’t really kicked in yet. I’m not prone to hormone mood swings or moodiness, so I can’t speak to that. My husband told me when I was pregnant that I’m the only pregnant woman he ever met who was “normal”! And in his family, there’s a LOT of children!
Then rads came , then pneumonitis, and ruined me for months. Finished steroids in March, I’m JUST starting to get back to normal again. Feeling pretty good though. There are a few threads about doing well on T. It helps that I was never a good sleeper, so the hot flashes waking me up is not that different.
Good luck, I hope you keep doing well.
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Runor, I would love to have 1/4 of one of those little carmel candies.
Lewhy, I've had three days with pain in my thighs and the heel of my left foot. I took Motrin, sprayed with bio-freeze and put my leg up with pillows. Nothing has helped. My thigh is sore to the touch too. To add insult to injury, I had another "Drunken Sailor" bout of dizziness that no amount of liquid helped. I actually felt nauseous with the dizziness. I am really praying for one week with no SE's.
Egads007, I think I'm going to try your plan & go check out two local gyms. I loved going to my last gym because they had a pool & water aerobics. I felt so much better then. They shut down several years ago and I never found a new place.
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ThreeC - I wish my gym had a pool! Let us know how you get along with gym shopping, should be helpful for you!
Lewhy - YES! I used to watch my feet curl up and once saw my calf muscle literally turn backwards! It took weeks for the pain to subside. Awful! As I keep beating everyone over the head with, exercise has obliterated the legs spasms, specifically weight bearing lunges and squats...killer but works! Worth a shot
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I hear you Egads and Lewhy about the leg cramps. Holy Dinah! First it was the thighs and lately the lower legs, ankles, calves and yup, your foot heads off in some direction that no foot should ever point. I have literally grabbed my foot with both hands and wrestled it like I was trying to control an angry cobra. And then the muscle hurts for weeks, like you were kicked by a horse!
ThreeC, I would not know a blood clot if one jumped up and bit me, but tamoxifen does put us at risk for clots. So maybe research symptoms of clot and make sure that isn't what might be causing so much ongoing leg pain? A cramp and after pain is one thing but your thigh sore to the touch sounds worthy of some research.0 -
I have a very active job that requires a lot of walking, i think i put on 13000 steps a day, with 10-12 flights of steps added in there. So i get plenty of "exercise" my leg cramps still come and go.
Has anyone noticed that you bruise easier now? I barely bump into something and get a huge bruise.
The weather is finally getting nice here. How about where you are?
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shelabela---I get lots of bruising but I'm also on a baby aspirin. I started out daily but had to swap to 3 times a week cause I bruised so easily. My MO says that's just as good. I still bruise but not as bad.
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I get short of breath easy with any exertion and I get intermittent sharp pains dead center in my chest. The other day, the pains started around 2 pm after dancing in my chair to music at work and came and went all day until about 10 pm. MO said that only 5 percent of patients on tamoxifen have chest pain and that tamoxifen cannot cause shortness of breath. I too had leg cramps but had dramatically improved after taking magnesium glycinate daily. I was taking baby aspirin every day, but also bruised easily and changed to every 3 days. When the chest pain started, I was afraid of blood clots so went back to every other day. I wish my MO would just do a darn chest ct. I don’t think it’s a heart issue
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Shelabela - I would average 19 to 20k steps per day at a very quick paceand it made very little difference to the leg probs. Only starting weight bearing leg exercises did the trick. As for bruising, yes, definitely, especially on the insides of my arms.
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lala1-just wondering if you have had any improvements or other withdrawal symptoms since you are off tamoxifen. Did you have side effects?
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AnnN--I had the usual SEs like muscle and joint pain, weight gain, vaginal discharge, thinning hair (on my head. Unfortunately it was the opposite on my face!) and constipation. I actually didn't have hot flashes till I had the hysterectomy but now I have them fairly often but fortunately not too strong.
I've seen my muscle and joint pain go away completely. I haven't lost a single ounce of weight so I guess I'd have to admit it must be me and not the Tamoxifen. Dammit.... My vaginal discharge actually got really bad about 3 weeks after stopping but last week I finally got some Diflucan from my gyn and although it didn't cure me, I'm about 85% better so I'm guessing that was a yeast infection. Haven't had one of those in decades so I really think coming off the Tamoxifen might have just thrown my body out of whack. The hair on my head is starting to thicken back up ( and I say that as someone who has very fine thin hair to begin with) and I've definitely quit growing a stupid beard on my face. Hot flashes are no better but also no worse. So I guess coming off has got some good points and some not so good points.
I never had really strong SEs on Tamoxifen, nothing I couldn't deal with using supplements or exercise and yoga. I've gotten my BCI test results back and find myself in the very small group of people who are High Risk for Recurrence but Low Benefit from continuing Tamoxifen. Kind of makes me wonder how much good it actually did me for the last 5 years. Not that I wouldn't have taken it and not that I'm not totally positive that some of the SEs were a result of it (hello joint pain!) but I'm realizing I can't blame all my issues on it. I was approaching menopause when diagnosed and tossed into it surgically 2 years into Tamoxifen. Might be some of my issues were menopause driven.
I will say that coming off it was a lot like starting it. I had nausea, dizziness, bloating and mild headaches when I first started. Once I upped my water intake a great deal, those issues went away. When I stopped Tamoxifen, I experienced those same issues but milder. I again upped my water and they all subsided. Now to just figure out how to drop these stupid 15 pounds I gained while on it....I just love food too much!
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lala1- Thanks for the detailed reply. I'm on year 7 of 10 and have had serious joint pain in 2012 and again recently- both times when my provider changed and l used a brand other than Watson. Since Ive returned to the forum, l am more aware of the continual SEs which I have always believed were menopausal but enhanced by Tamoxifen. My oncologist always asks about SEs, and I advise they were not too bad. At my next visit, I plan to discuss them more closely. The dry skin/rash, thin hair, poor nails, thyroid issues, difficulty sleeping, and continual aches and pains despite regular excecise, together add up to make me consider quitting at least for a few months. Seems shallow, but I'd love to see if I get my old hair back! I'm also wondering about lowering to 10mg per day for awhile before stopping completely.
I didn't see your last post when l quickly scrolled back to check how long since you stopped. I'm considered high for reoccurrance, high benefits. Like you, I was approaching menopause when diagnosed. I never had a period after chemo.
Thanks again.
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lala1- Thanks for the detailed reply. I'm on year 7 of 10 and have had serious joint pain in 2012 and again recently- both times when my provider changed and l used a brand other than Watson. Since Ive returned to the forum, l am more aware of the continual SEs which I have always believed were menopausal but enhanced by Tamoxifen. My oncologist always asks about SEs, and I advise they were not too bad. At my next visit, I plan to discuss them more closely. The dry skin/rash, thin hair, poor nails, thyroid issues, difficulty sleeping, and continual aches and pains despite regular excecise, together add up to make me consider quitting at least for a few months. Seems shallow, but I'd love to see if I get my old hair back! I'm also wondering about lowering to 10mg per day for awhile before stopping completely.
I didn't see your last post when l quickly scrolled back to check how long since you stopped. I'm considered high for reoccurrance, high benefits. Like you, I was approaching menopause when diagnosed. I never had a period after chemo.
Thanks again.
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