Bottle o Tamoxifen
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Tip for leg cramps: Your instinct when you get one is to stretch your toe away from your body but that makes it worse. Extend your toe up towards your body to stop them. I learned this when I was pregnant. I don't get leg cramps. I get mostly a cramp in my arm.
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I'm now taking 200mg mag citrate in the morning and 200mg mag glycinate in the evening, as well as turmeric, ginger, biotin, probiotics and calcium. The mag glycinate seems to have reduced my HFs at night. The mag citrate works on the legs cramps. I note, however, if I don't exercise daily, at least a long walk, I still get the leg cramps.
Scottie
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**Jumping off the T-Train after 7 1/2 years** (My apologies if this has been addressed, as I have not been on here in years . . . )
I have been on Tamoxifen for 7 1/2 years, and for the last several years have been unable to sleep for more than a half hour on one side (due to pain in hips and shoulders), so spend the entire night flipping back and forth, trying to get comfortable. I have also suffered from leg cramps, weight gain, belly fat, extensive hair loss and foggy brain). This last year, I have had blood in my urine, however, CAT scan and cystoscopy show no apparent cause. I have also had frequent yeast infections. I decided to take a break rom the tamoxifen and immediately saw a decrease in pain at night . . . Not totally pain free every night, but have slept for 4 - 6 hours with no pain (about 7 out of 10 nights), which I have not done in years! My concerns are due to likelihood of pain if I start up AI's for the next 2 - 3 years (I originally was not put on them due to pain issues in my back and hips when I first came off radiation). Has anyone had a similar experience (pain, blood in urine, etc., after this long on the drug), or does anyone have advice about outright stopping Tamoxifen after 7 1/2 years, versus sticking it out for the full, recommended ten years? Thanks in advance and best wishes to you all on your Tamoxifen journeys!
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Momof4gramof3
I ordered the Turmeric Supreme from Amazon. GAIA brand. Very reputable.
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lala1: How much Turmeric do you take daily??
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Rickster, I, too, just stopped. For different reasons.. Constipation and gas got hard to live with. I had to stop magnesium because of kidney issues, so I ended up stopping calcium, too. I just could not be sooooo uncomfortable anymore, stopped shy of 5 yrs on AI and Tamox. Now we worry...
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NormaJean: Ask your dog about the Melatonin. I take a super big dose = 20 mg. My onc has no problem with it.
I have been known to take Klonopin when my insomnia was horrible. The melatonin is a healthier alternative and it's worth trying.
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gardengypsy---This is how my holistic doc told me to do the turmeric.....take 1 capsule once a day for a month. If you get improvement, continue with that plan. If you don't, up it to 2 capsules once a day for another month. If you still don't get improvement, then it's not going to work for you. I saw a noticeable improvement in about 10 days and was pretty well pain free at 3 weeks. I put my dad on it who hasn't been able to golf or hunt for a couple of years due to knee issues and he said it took about 2 weeks to see improvement and he was back on the golf course within a month. It doesn't work for everyone though. You just have to give it enough time to see.
And I agree with Scottiemom....if I don't do some type of exercise most every day, my joint and muscle pain gets worse.
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Do Hot Flashes come & go? I noticed I haven't have any this past week. Although it's quite hot is the last few days, but the Hot Flashes were different...
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Yes. I've found all side effects of Tamoxifen, including hot flashes, wax and wane for me even with the same Rx manufacturer.
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My hot flashes also seem to come and go. I'll have a stretch of days when i have very few and then days where they are terrible. I've been meaning to start logging them to see if there is a pattern.
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lala1
Thank you. It makes sense to go a little at a time and I really like the way your doc explained how to take it. I am currently taking Gabapentrin for post chemo leg pain, and would like to go off as much pharmaceuticals as possible!!
On a daily basis, I move around in the garden and I do 20 minutes on my recumbent bike. I am starting exercise classes as soon as my recent surgery heals a bit more.
The problem is, as soon as I sit down or lie down, everything seems to freeze up.
Thanks again for the recommendation!
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I seem to have noticed that my hot flashes increase with stress.
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I have a question, I started Tamoxifen for about 4 days and got off because I was getting really bad headaches and having stomach issues. I have ulcerative colitis already and Tamoxifen exacerbated the symptoms. I was diagnosed with Stage 1, Grade 1, had a lumpectomy and 4 weeks of radiation. Last rad was mid-April. I waited until June to start taking it and the headaches were just too bad. I stopped because I had a business conference and some other work deadlines to meet and I didn't want my work to suffer. I spoke with my onc and asked if he would consider 10 mg vs 20 and he said no. He said headaches aren't normally a SE of Tamoxifen and to take an anti-acid for my stomach issues. My onco score was an 8 and he said he would not berate me if I decided not to take Tamoxifen but there would be a 10% chance of recurrence without it. He did say to try it again and to give my body some time to adjust to it. I am going to retry it after I'm done with some work obligations which will be at the beginning of July. My question is, is there a specific timeframe that I need to take it after treatment...in other words, if I wait 3 months or so to start taking it will it be too late? Not sure if anyone knows the answer to this. Thanks!
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Tamo has given me plenty of s/e's but mostly it the same ones that I see everyone posting about. I am wondering if anyone else is having trouble with slow healing of skin lesions, such as mosquito bites, etc. Sunscreen gave me clogged pores on mostly arms & legs. I've used glycolic acid cream, retin A, etc. Now I'm trying my hubby's tetracycline along with a cream he uses for acne rosacea. Am finally seeing some progress but it's very slow to heal. My skin has become very dry and the skin around my nails is thicker and extremely dry.
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Lynn....sorry but did your doc really say he wouldn't berate you or were you paraphrasing? Maybe if he walked one day in your shoes he would have a different attitude. I'm not saying we shouldn't trust our docs or not follow their advice but bottom line its our bodies and our lives. We have the ultimate decision and we shouldn't be afraid to be honest with them. Good luck and keep us posted
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Blownaway, I use a Cetaphil 30 SPF moisturizer on exposed areas and the radiated area. I get acne easily and this doesn't give me trouble. It's also in a container that's purse-sized and has a dispenser twist lock. I've tried a number of other sunblocks but they're either greasy or stain my clothes, so I'm willing to go with Cetaphil. It has a good rating from EWG (Environmental Working Group). The Cetaphil SPF 50 is better than many sunscreens in this regard as well.
I use a non-paraben-containing Body Shop body butter on the rest of my body, including toenails, and I'm waiting for a catalog from Lemongrass Spa (products also well-rated by EWG) to find something more natural to replace it. I know a member of this board who sells Lemongrass Spa, so feel free to message me if you want her to contact you.
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I just realized that it has already been about a year since I started Tamoxifen. I think overall I tolerated it well. I had some vicious hot flashes, but no night sweats. Still getting the hot flashes, but I think they're more manageable than they used to be.
I do get achy, especially in my neck. Some days it's a sharp pain depending on how I move. I was getting some anxiety that it's mets, but then I had to stop the Tamoxifen for a couple of weeks because of surgery and the pain went away. Now that I'm back on Tamoxifen, so is the pain.
My MO and my husband seem to think that it has started affecting me emotionally recently. They think I'm getting depressed. I'm not convinced it is due to Tamoxifen. I am just very tired, angry, frustrated and resentful towards a certain situation in my life, which is nothing new. There are periods when it gets on my nerves more than usually, but it has been happening before Tamoxifen and before cancer. It might be a little more intense nowadays, because dealing with cancer is hard enough on a person and I hate the fact that I have to deal with this other situation and I cannot find a way how I can remove myself from it. I do not want to take antidepressants.
Anyway, do any of you Ladies experience depression as a side effect of Tamoxifen?
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BBwithBC---I'm not totally convinced it's always depression. I thought that at first but now I realize that since my BC diagnosis, I no longer have the capacity for alot of the BS that's out there. I tell people the one silver lining of cancer was that I've learned to put myself first and say no when I need to. I say "The doctors broke my give-a-sh*tter when they operated on me and I have gotten it fixed yet! Nor do I plan to!!". That usually gets a laugh and then people will step back. Sometimes I think having less patience for the stupid people/things in life makes others think you're depressed. Cancer, and it's treatments, have shown me that it's ok to be a little bit selfish.
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Lala - ha, ha, I like your retort. I may steal it from you, if I ever dare to use it.
You're right, it's easy for others to blame your every mood on cancer. I'm under impression that they simplify it and this way they feel like they don't need to deal with the problem, because it's all "cancer's fault".
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And most people don't like change but trust me, cancer changes you. It's just up to you in what way this happens. With any luck the changes are for the better. We should never have to feel guilty for taking care of ourselves, which women tend to do, or apologize for who we are, which we also tend to do. I like the new me. I may have put on the usual Tamoxifen pounds but I work out every day, am starting to have muscles (which I love!) and I've discovered yoga, massage, acupuncture and supplements. My diet still isn't the best but heck's bells, you can't be perfect. Then there'd be nothing left to strive for! This makes me think of my "other" self....before BC I smoked which my DH hated, hated, hated. He'd say to me "If you didn't smoke, you'd be perfect." And I'd say "I'll quit smoking when you deserve perfection!" I smoked my last cigarette the night before my mastectomy. Now DH chuckles about having the "perfect" wife without having to change a thing about himself!
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gardengypsy
Thanks so much for the suggestion for the Turmeric. I'll definitely give it a look.
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Last week my MO gave me a prescription for tamoxifen and told me to start it when I finished radiation. I finished on Monday and was wondering how soon to start. I left a message for her but have not heard back yet. I was wondering how soon those of you who had rads first waited before starting tamoxifen.
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One week for me.
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I also waited about one week
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it was a week for me also
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Thanks to the gals that responded to my question about melatonin enhancing the effectiveness of Tamoxifen. My DH could only find 5mg at the grocery so I have decided to start off w/ 10mg & go from there. The appt w/ onco was changed to this coming Tues. I have always been one that went in to the office & answered no, no, no to questions pertaining to SEs as they were never what I considered problematic since when they occurred they only lasted for a couple of days. BUT, lately the duration is getting longer plus the hair loss is the straw that has broke the camel's back. Poor onco is surely in for a surprise this coming visit. We either find something else to take or I don't think I am going to make the 10yr mark.
I have depression & I know it is not all tied to Tamoxifen but some portion is. I was diagnosed years ago w/ SAD (seasonal affected depression). Lately I don't have much interest in anything and I hate what this journey has costed me. I also am so p*ss off that this far out (6yrs since biopsy) that everyone still looks at me & sees me as only a cancer patient. Damn if I wouldn't love to have my life back. I can't even remember what "normal" is anymore & doubt I will ever see it again.
Sorry about the rant but I'm sure I'm not alone. Hoping all have a good weekend coming up. To the new gals I would say go with the flow as long as you can but don't suffer in silence. Scream, yell or throw a tantrum to get whatever you need to make you feel better physically & emotionally & don't back down. Unless someone has taken this journey they really don't know how any of us feel.
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I started almost at the same time
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lala1~ Your positivity is appreciated. Not sure I am ready to accept these changes. I am still in the middle of treatment!
NormaJean~ I am feeling down as well. I think that the more I am engaged with people who support me, the better I feel. I know I have to keep reaching out to new things - experiences, exercises, art, therapy...whatever is available and whatever I can do.
Stay strong!
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gardengypsy......thanks for your input. I did/do feel bad about the rant. I put this CA journey in God's hands, I am still only human & I get "cranky" sometimes about how much it has changed my life.
Blessings to all the gals on the list, newbies & old timers like me. Have a wonderful weekend.
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