Bottle o Tamoxifen
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I am starting tamoxifen (or something like it) after my rads. Someone mentioned brittle nails. I usually have acrylic nails, but I let them grow out this summer and they are pretty thin. Does anyone had any problems with acrylic or gel nails while on Tamoxifen? I don't really want to wait too long to get them redone.
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Bethany, I sometimes get my nails done with gel and haven't had any problems. I do take Biotin since I finished chemo. I don't know if it helps but I guess it doesn't hurt. I am pretty tough on my nails and the gel lasts at least 2 weeks and looks good. I usually stretch it to a 3rd week if I have nothing special going on. Good Luck, Mary-Jo
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Garden Gypsy, I asked my allergist about the long term use of Claritin, (I knew I was going to be taking it for a minimum of 5 years along with Arimidex) and she told me that Claritin is the only antihistamine that you can take on an extended basis.
If I had not been able to take it I don't think I would have been able to carry on with the Arimidex. My bone pain was intense and kept me up through the night.
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I believe that memory problems are a side effect. Just this morning I lost the lid to the milk carton and got locked out of my banking info because I forgot the password....that has been the same for years! Between the eyesight going, the weight gain and now the memory issues, I feel like I'm going nuts!
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Awesome post! I needed this today. One day at a time! Thank you
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On tamoxifen, i've had memory issues..I call it brain fog. Also, my right eye which was my better eye has gotten worse.
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A nurse at my oncologist calls me once a month to check and see how I am doing with the Tamoxifen. I told her this time about all the side effects I have been having. She listened and then told me to stop taking it for two weeks and see if they subside and that way we would know it is the pill that's doing it. After I hung up I was like, of course it is the pill. And I am scared of not taking it. Now I don't know what to do.
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myspaulding
If the side effects go away, it could be the Tamoxifen. But I am also a firm believer in the Placebo Effect.
Yes, there are side effects, but the drugs may safe your life.
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I took my first pill tonight. I told my Dr I was nervous because I come to the table with major side effects to drugs and a lot of GI problems in general. He told me that everyone he sees says that and he really doesn't see many people with many side effects except for hot flashes and sometimes muscle cramps. I'm sure he's right and I'm sure so many people do say what I say, but I stopped breathing under anesthesia (I was 40 and healthy), my blood pressure bottomed out from a pain med and they had to reverse the medicine, they couldn't stop my vomiting from medicines, I almost loss my vision (it came back) from the scopolamine patch twice, and I have extreme shakes after any anesthesia. I'm really not kidding. This Dr has no clue. I'm hoping this time he's right. Let's all hope
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Myspaulding, when I first started tamoxifen in May of 2015 my side effects were very severe from almost the first week. I experienced the SEs from the most commeon to some of the rare ones that most do not encounter. My Onc even indicated that some of the SEs I was exprencing were not on her list. But I love her as she indicated everyone is different and there is always a first. I.e. she had never had anyone that experienced vertigo and dizziness where I would loose my balance and just fall -- this lasted about three weeks, where I could not drive or go to work. After about 4 months with no let up of the SEs and just different ones showing up every few weeks. My MO finally decided to give me a tamoxifen break for two weeks to give my system a reboot. The reboot worked wonders and the severe side effects went away during my tamo break and didn't resurface. I still have SEs from Tamoxifen -- I am just one of the unlucky ones I guess.
Wanted to also jump into the Green tea decision. I drink Organic Green tea and add the matcha green tea powder (organic). My naturopathic Onc and a friend of mine that also had cancer recommended it to me during my treatment. My Naturopathic Onc also indicates that it is important to get a good grade of the matcha green tea powder. When I get home I will post the brand that she recommends. I pick it up from Wholefoods. It is not cheap $24.00 for a small can but it does last several months.
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"Question is, do we want to take this long term?" That is, I think, a good question, GardenGyspy. I was sort of (but only sort of) joking about staying on the Claritin forever! But I did do some research and from what I can tell there are no known adverse effects of taking Claritin/loratadine long term, except that extended use may make the product less effective in reducing allergy symptoms over time (bad for someone like me who needs it for this reason). Of course, "no known" doesn't mean there aren't any.
There is a certain irony in questioning whether or not to take a fairly benign drug in order to help us continue to take another drug with known life threatening side effects (endometrial cancer and blood clots). The wonderful choices we get to make as people who have been diagnosed with BC!
For now, since I need loratadine to breathe for as long as outdoor mold counts are in the "high" range, your question is sort of a moot point for me. One thing I have noticed about my Tamoxifen SEs is that some of them seem to be transient in nature. When I first started taking Tamoxifen, I broke out with nasty cystic acne-for about a month. That resolved itself. Ditto for vaginal irritations and yeast infections. Hot flashes seem to come and go in groups-I'll be fine for weeks, then a hot, sweaty mess for awhile. Anyway, I'm hoping that maybe the Tamoxifen aches and pains will resolve or lessen over time, as some of my other problems with Tamoxifen have, and by the end of fall-when I can expect to go off the loratadine for allergies-they will be less of an issue.
I do think for anyone experiencing these aches and pains on Tamoxifen, trying some loratadine might be worth doing-maybe for a little while, maybe for a long while. I do feel SO much better in the aches and pains department (and being able to breathe is good too), LOL.
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Saw MO today and had a good discussion about my supps and my continued nerve pain. The goods news is that my numbers were so good I graduated from 4 to 6 month checks. The bad news is I apparently have some lymphodema on both sides, so she's referring me to a lymphodema clinic at one of our hospitals for specialized massage.
On another note, since it's been mentioned before, I asked and am not considered in menapause even though I haven't had a cycle in 12 months. Tamoxifen can stop the cycles and you can still get pregnant. So I have to use BC for at least another year.
Interesting note about simple carbs and HFs. Mine are worse if I eat a high fat meal after 4 or 5 pm. I'm a carboholic too, though mostly complex carbs, but am going to try watching simple carbs for a few weeks to see if there is a measurable difference. Also going to cut way back on the diet coke and aim for more green tea.
Scottie
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mom2four....I have been on Tamoxifen for almost a month now and so far (touch wood) no side effects. I was super nervous at the beginning but am starting to relax now
my MO's office has been calling me weekly and they said most start around 3 weeks. I am just past the 3 week mark good luck0 -
Carlsoda, I've been on tamoxifen for 7 weeks tomorrow and I haven't had any noticeable se either. Keeping my fingers crossed. Trying to relax, but can't help but wonder when I take it if today will be the day I'll get se's.
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That's amazing that you two have done so well. Hoping it continues. I think my sleep deprivation from the TE will probably be worse on me then the SE from the medicine. Lol. Time will tell.
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tbalding: I feel much the same every night when I take my little pill; then pleasantly surprised in the morning!
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does anyone know if tamoxifen and whey protein have any negative interactions?
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I took Tamoxifen after my first dx in 2011. Three years later DCIS was found in the other breast. I took one year of Arimidex and the joint pain was so bad I discontinued taking it ( MO knew.) Now my new MO has put me back on Tamoxifen. I went thru menopause between the dx so it's a different situation. Anyone out there been prescribed Tamoxifen twice?
Thanks..
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silviah. . .I make protein smoothies with whey powder. MO only told me to stop the soy powder because I'm so ER+. I have a milk allergy and I'm vegetarian so I have to supplement my protein.
Scottie
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interesting Scottie, my MO told me soy products are ok. Each Doctor is so different! I think she is a vegetarian so that's likely why it's ok in her eyes! :
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Blessedteacher---I wasn't prescribed Tamoxifen twice but I did have a total hysterectomy 2 years after starting it, which was 20 months ago, and I am still on it. I do very well on it as far as SEs go. My BS, who still sees me on a regular basis and likes to stay involved in my treatment, thinks I should just stay on it. He says since my SEs are so mild and I would only get a couple of percentage points in my reduction in recurrence, then I'll be fine. My MO said do you want to swap? And when I told him what my BS said, he just shrugged and said fine with him. I'm seeing him next week for my yearly and I plan to discuss this extensively with him. I know AIs work better but I've been looking at the studies and I think the greatest reduction in recurrence rate is for the women who had larger node positive BC. My BS feels Tamoxifen works just as well (or at least close enough) for someone with my stats so for now, I'm staying on it and will do 10 years.
And just as an aside....another thing I have to consider is I have heart disease in my family. I lost my sister at 39 years old back in 2008 to a heart attack. I know that Tamoxifen increases risk of stroke so I take daily aspirin and fish oil and I exercise daily. But I've heard AIs can really mess with cholesterol and triglycerides and such long term which I think could be worse. Another question I'm putting to my MO. Then I'm going to ask him about the BCI test which I hear measures how well you metabolize Tamoxifen. I think those results would go a long way to reassuring me about about staying on Tamoxifen (or let me know I NEED to change to an AI). What I really need is him to explain (in depth!) the SOFT and TEXT trials, specifically how they relate to my situation. If I get any good info, I'll let you know.
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Carlsoda. . .I should clarify that soy was major part of my vegetarian diet before BC. That included Kashi soy cereals, soy protein bars, tofu and soy powder. MO said some soy is good because of the benefits but I had to cut back because of my cancer type. It's all individual. I'm now seriously looking into the LE diet and I'm going to have to cut back on my gluten (wheat prote in is another main stay), diet coke and sadly my salt intake. Uggg
Scottie
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Scottie, makes sense. I only use a little organic vanilla soy milk in my coffee because I don't eat dairy. Since that's my only soy intake, MO ok'd it. I am ER+ 95%. Glad I can have it because coconut milk and almond milk just doa s not taste good
Isn't it crazy how our diets change as we age??!! I follow lchf and feel so much better on it. My husband follows FODMAP and it's perfect for him. Whatever works!
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My Mo is ok with soy in it's nature forms in moderation (tofu, etc) , but said not processed / concentrated stuff such as soy protein powder
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Anyone have period symptoms (cramps, bloating) but no period?
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Superius, that's what all my docs say about soy as well.
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I have been taking the tamoxifen for not quite a week now. I am beyond exhausted. I was walking 3 miles a day and hiking a few times I week. But now I am toast. Get get up from the couch. Anyone else like this? Does it go away? Any remedies?
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mom2four. . .I take several supplements that help with exhibition and joint pain.
calcium, magnesium glycinate, magnesium citrate, fish oil, biotin, curcumin, ginger, vitamin C etc.
The magnesium definitely helps. If I don't take it, even the dreadmill hurts. Talk to your MO about supps.
Scottie
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Mom2Four, I finished rads same week I started tomoxifen. Probably a week after starting tamox I experienced extreme fatigue. All I could manage was work and force myself to go to excercise class, then nap until bedtime. I didn't take anything other than continued excercising, try to change my diet to eat more healthy & upped protein. Not sure if fatigue was from rads or tamox, but about 5-6 weeks after starting it, my energy started coming back. Now I have no noticeable se. Only supplements I take are multi vitamin, biotin & melatonin. Hang in there.
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Wow. We are all having such different experiences.
labelle~ the achiness is very tough right now, and I am not seeing any positive effects from the Turmeric. :-(
Again, I am confused by what I see as different symptoms: some is the joint pain from the Tamoxifen and the neuropathy is from the chemo.
I guess I'd have to take a Tamox break to find out, but why do that if I am committed to staying on it?
Is anyone else confused by symptoms and their causes??
Lady B~ I will ask my doc about a "reboot."
Scottiemom~ What are you doing for the leg pain? I am on 400 mg Gabapentin daily.
I need to do some research on herbs that may help.
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