Bottle 'o Tamoxifen

welcome rgoossen, hope you have mild SE from tamo!

Vampeyes, I understand your frustration when you get two reports that say the opposite things. Like, who do you believe? If you skip off thinking nothing is wrong and miss the opportunity to address a medical problem, then you'll be mad later when someone says, too bad you didn't treat it earlier. But if you go with the bad report and press for more tests or bring it up that you're not happy with the answers, you will be branded a hypochondriac cancer patient who thinks everything is more cancer. Of course, the truth is that it COULD be more cancer. Or not. There is no good outcome here other than to lay awake and wonder if you should forget about it or pursue it further. That is how I feel about my last 2 mammograms where they first said, yikes, there is something there and the second opinion of that same mammogram said, meh, forgetaboutit. 4 months later the second mamm said, yup, there is still an architectural distortion clearly in place so we'll just watch it for the next 6 months then mamm again. Oh for pete's sake!!

TaRenee ... I HAD THAT! I was outside with my pants rolled up and the next day my lower legs looked exactly like that. But it wasn't a smooth, all over redness like a usual burn, it was kind of speckly and blotchy. I showed my daughter and she said that's not a burn, that's a rash. And she was right . It looked more like a rash than any burn I've ever had. So I wonder, does tamoxifen make you more prone to sun rash? If there is such a thing? Not a true burn but a photosensitivity? Either way, whatever that is, I got it, red and blotchy looking. No pain or itching. It did not feel burned at all. Just looked like a boiled chicken thigh.

I don’t know what it was Runor. It seemed like sun poisoning. Or a rash. It is just really strange that I only got it on one part of my legs. It hurt like a sunburn. The next morning it actually hurt to walk the first few steps when the skin stretched. Every time I got up from sitting the next day it was painful. And it was super sensitive to heat/sun the next few days. I have never experienced anything like this. It’s been 7 days, and while it is better, it is not gone.

I used SPF 15 but I was in and out of the ocean water all day. (I LOVE what saltwater does for my hair and skin) so maybe I wasn’t applying it often enough. Maybe there was some kind of reaction to the water ant it was just too much. I don’t know.

I spend a LOT of time outdoors during the summer and fall months usually, so I hope it doesn’t repeat

I have had terrible CIPN since chemo ended 2 years ago. The pain in my legs has gotten steadily worse, especially at night. I began to suspect the Tamoxifen. Onc at DFCI said leg pain was not a side effect of T. I went off the Tamoxifen 17 days ago. Considerable improvement. I guess I am headed over to the world of AIs. If major side effects continue, then I am done.

I just noticed this paragraph in Beesie's comprehensive info post on DCIS:

UPDATED - Tamoxifen is currently the only endocrine therapy approved for women who've had DCIS. For women with invasive cancer, while Tamoxifen is given to pre-menopausal women, post-menopausal women often are prescribed an Aromatase Inhibitor (either Arimidex or Aromasin or Femara). Aromatase Inhibitors (AIs) are not yet approved for women who've had DCIS. Recent studies have however shown that the AIs may be more effective than Tamoxifen at reducing recurrence. Based on this, and in anticipation of the approval of AIs for women with DCIS, the 2016 NCCN Guidelines now indicate that post-menopausal women with DCIS may choose to take either Tamoxifen or an AI. The guidelines note that there may be some advantage for aromatase inhibitor therapy in patients <60 years old or those who have concerns about thromboembolism.

Has this been updated by the NCCN since 2016?

mellee, thank you for your response. I just started taking tamoxifen yesterday, does it take awhile for the magnesium to build up in your body to help with aches and sleep?

had to quit my Tamoxifen after 9 days. The side effects we're so severe I couldn't walk and after 3 weeks my right hand is still useless. Going to physical therapy and on pain meds. My quality of life was non existent. Couldn't even think. Pain was so bad I couldn't roll over in bed with out waking. My symptoms did not go away when I quit taking it. Just had a bone scan, it was clean. So happy about that. I now have arthritis in my neck and back that wasn't there before. That's a chemo S.E. but the Tamoxifen really kicked it up a notch. Due to low quality of life, onc. Agreed I would have as much success being able to walk and exercise and have good mental health. So I'm going with a very controlled diet, exercise, good mental health. Better for my type 1 diabetes. So, I'm going to take joy in the fact I can walk again and have some mental clarity. Sending comfort and hope and peace to all.

I take 500 mg magnesium every night for (TMI) constipation. It does nothing for the bone pain or joint problems I have from Tamoxifen. I gave myself a 3 month break from Tamoxifen even though I am 95% ER. The hot flashes did not go away (that appears to be just me and menopause). After starting back up, the bone pain increased, my elbows are extremely painful and weak but the most disheartening s/e is that my already thin hair continues to shed at an alarming rate even after 2 months of being back on Tamoxifen....aaarrrggg

Lovinggrouches - when you go back on Tamoxifen will you try a different brand? I have been off for 10 days now and I feel soooo much better. A little arthritic pain going on in my wrist and back, but other than that I feel pretty good. I can breath!!!!! I was contemplating a different brand when/if I go back on it.

I’ve never paid attention to the brand. I will look into it

It’s great that I don’t feel like crap with the extreme fatigue so bad. My hip pain is much improved, sleep still sucks but that is probably because of having ovaries out also. My urine also doesn’t smell as bad and I have some feeling back in my private areas. I will look into the brand thing, but I think the elevated liver enzymes had a lot to do with my feeling bad also and at least it went down som

Seen my GP today, he went over all tests with me. Unlike the MO who doesn't even have a file on me! Anyway no clot, something was there, they just don't know what... strange. My GP said could be mets on its way to somewhere else - awesome {insert scarcasm} No bone mets, it is arthritis, appatently the two glow differently on the bone scan. For now essential oils and Robax Platinum for the pain. GP also wrote me a script for name brand Tamoxifen - no substitutions. Picked it up today and will start tomorrow. I sure hope the SEs are better than the last one! Going to see a naturalpath on Friday for his thoughts on all this.

re Tamoxifen--my drug guide specifies to avoid St. John's wort, dong quai and black cohosh.

Hope this is helpful.

Vampeyes, what do you mean by name brand tamoxifen? I've been advised there is no longer a non-generic tamoxifen.

pollifax, i take effexor and it helps a lot. I would have 1 long all day hot flash. Now i have maybe 1 small one a day.