Tamoxifen, leg pain, and mourning for my big toenail.

Ellen139

HI y'all. This is my first post here.

I'm coming up on my 2 year anniversary of tamoxifen and AIs. I started with tamoxifen, and it caused me awful leg pain (shin splint-like, as you described, Michelle). I toughed it out as long as I could, then I tried letrozole. That was even worse. So, back to tamoxifen, and it seemed not so bad in comparison, but the pain still plagues me. I take magnesium, turmeric, acetaminophen, vitamin D, Nerium EHT and Aleve. I take daily Epson salt baths. I stay active, and find the pain is no worse with activity. I work as an RN in the cardiac ICU and it's hard (and exhausting) work, but I thought I was starting to get used to it all. A few months ago, I commented to my husband, "Wow, my pain is not too bad today. I feel like a regular nurse, sore and tired after a 12 hour shift." For a few weeks, I was coping very well. And then the pain returned with a vengeance. Constant, unbearable, now in my arms, worse than ever in my joints. I stopped taking the medication the end of April. I understand tamoxifen has a long half life (4-11 days) but but the pain hasn't gone away. At all. I reached crisis level last week, crying, panicking, wondering how I could go on like this. I can't sleep, I can't focus, and I just can't see the light at the end of the tunnel. Three more years of this quality of life?!

I made an appointment with my oncologist and started reading these boards looking for answers. It seems you guys have tried a lot of the same remedies that I have. I was most interested to read about side effects differing when the tamoxifen is produced by different manufacturers. It occured to me that my pills, from the very beginning, came in a blue bottle. Several months ago, Rite Aid started filling my script with a different shaped pill, in a regular prescription bottle. I took little note of it at the time, beyond ensuring that the medication and dosage were the same as I had been taking. After reading about the different manufacturers, I took out my old bottles, and realized the last couple months, I have been getting the blue bottles again. Oh wow, and here is my pain at an all time high!

I saw the doc today and she said it was pretty noteworthy that when tamoxifen went generic, many more people were complaining of pain as a side effect. She says to stay off for another week, then re-start with the "good" tamoxifen, which I have determined is produced by Mayne. The blue bottle is Mylan. I have 60 pills of the Mayne, and if it turns out they work OK for me, I'll work on getting the same kind every time. I'm so hopeful this change will turn things around. If I'm still having this much pain in a few months, doc will order a bone scan to rule out bone mets.

I never knew this breast cancer thing was such a nasty ongoing project! I even worked as an inpatient oncology nurse, so I am very familiar with cancer treatment, but I never knew what my patients went through all day, every day, during treatments, and long after the cancer is "gone." Talk about a lesson in empathy!

I know it doesn't matter in the grand scheme of things, but last night my big toenail fell off again. So much for pretty pedicures this summer. It was the final straw. I cried and cried. I feel like crap, I hurt, my hair is ugly, I've lost friends, I've missed so much over the last 2 years, and now my toe!

But I'm alive, so I got that going for me. Keeping positive in Oregon, Ellen

Michelle_in_cornland

Ellen, I am sending you a big, giant hug, girlie. This week kind of sucked in general here in Illinois with all the rain. One thing that helped my shin splints was returning to wearing a supportive walking/running shoe. I also slept with a bar of soap on the impaired shin, which helped. BC is an all day, every day, encompassing diagnosis. I use the Teva brand of Tamoxifen and it works great. I am sorry that you think you have ugly hair, mine is getting shabby. I am trying new hair products such as Matrix rose oil for volume and Living Proof Timeless and Full shampoos and products. If the hair shedding gets bad, I am getting a wig. Where did you lose your friends? Can you find them?? I felt like crying this week for no reason in particular. We have just had too many gray days. Hang in there!!!

Ellen139

Thanks for the warm reply, Michelle. I have read several of your posts here and found them hopeful and inspiring.

I'm feeling much better today. I worked all weekend, and I'm enjoying a peaceful Monday to recover while my husband is at work and my daughter is at school. DIshwasher and clothes washer are both running, so I feel like I'm accomplishing something. My other big task to complete today is to clean set up my yard swing so I can enjoy beautiful mornings out under my big tree. I need to buy a little table to place by the swing to hold my iced tea. Little delights.

I am always sore after working, but I feel I am doing remarkably well today. Hope springs eternal!

Michelle_in_cornland

Yeah, Ellen!!! I have been emptying out a room in the lower level, so that my son can have 3/4 of 2000 square feet (even though he goes back to school in the fall). But I feel good about getting rid of unwanted items. Such a relief. Getting my java on here in a bit and then back to work in the "mole hole" that is what I call the lower level. I am glad you are feeling better. Well, I have to get my washer running too!! So chat with you later.