Bottle 'o Tamoxifen

Can I ask for a favor from you ladies? I'm trying to convince a very special young man in my life that he is on to something. Would you please help me convince him by reading through and giving your opinion? Since it's likely not wise to publish his name on a public forum and his first name is pretty unique I'll just call him T for short.

T is the youngest son of one of my best friends. What makes him so special and remarkable? T is growing his gorgeous hair out to donate it to make wigs for children who are fighting cancer (did I mention he has gorgeous hair even first thing in the morning?). Yesterday, his mom sent these photos over giving me a sneak peek of what he's been working on in his spare time: keychains with meaning (he makes each one by hand). He made me a pink & silver one with the cursive 'hope' charm and a purple and silver one with the 'believe' charm in honor of 2 of the cancers I've fought. I'm so excited to get mine this week! I told him I think he should sell these and offer customization of colors and charms and think about donating all or part of what he makes to one of the research charities dedicated to finding a cure for stage IV cancer. What do you all think? Would you buy one? What price point would you suggest? I was thinking METavivor for the donation...any others you would suggest?

Oooh, love the key chains.

Egads, your cramp description was pretty spot on. I had an epic cramp over a week ago and ever since it threatens and threatens. I mutter under my breath, "Don't you dare, you bitch.." as that thigh, from groin to knee, gives me little warning shots. You have to wonder if a cramp is really just a cramp when the pain is still intense a week later. Like, how much muscle twisting and ripping can be qualified as 'just a cramp'? When I get one of those bad upper leg ones, I can't even stand up straight. Everything spasms so badly that upright posture is not possible. I do my Quasimodo shuffle / drag, moaning and drooling, knocking into furniture in the middle of the night. Often shrieking things like, Holy Shitballs this HURTS!.

At first my shoulders and elbows and wrists were stiff every morning. I was like one of those creaky praying mantises lurching along a leaf. Now the hips are going. Both at once. This is not age. This is tamoxifen. I bent over the other day and thought, gee, that's weird. I've never had a hard time bending over before. So I bent over again. Yup, that hurt. Bent over again. Ouch, when did those joints get so stiff? Bent over again. I'm like an idiot who can't quit slamming their hand in the door. Had to do it until I was sure it was hurting and I wasn't imagining it.

Winter is coming. I have wood to split and snow to shovel. All creaky and gnarled up. Oh, this is not going to be good.

Going to check medicine cabinet to see if I have mag. or pot. I will swallow them down with coffee. Booyah!

I’ve been on tamoxifen since June 18 of this year and overall I feel I’m tolerating it well. I just turned 34 last week so hopefully as I get older (will be on it until I’m 43!) I continue to tolerate it well. I do have to agree with the ladies above about the peeing! One second I don’t have to go and the next I’m practically running! I have also noticed I’m very irritable!! Every little thing gets a on my nerves . I’m hoping that will get better as time goes on too, that it’s not so much tamoxifen related as stress relate.

Runor lol!!! You described my life exactly!! Thanks for the laugh

thank you ladies for making me not feel crazy!! My husband is getting over a cold and has been walking around haking up phlegm and spitting it out....I’m over here gagging!!

Regarding stiffness and achy legs - earlier this year, I was having a terrible time with stiffness in my legs. While I used to be able to get down on the floor to watch tv or do floor exercises quite easily before chemo, I was unable to do this without a great deal of effort until recently. After watching "Forks over Knives" and reading "How not to Die" by Dr. Greggor, I gave up olive oil in my diet. I had eaten salad everyday with a dressing made with olive oil. I also used to stir fry vegetables in olive oil, and any recipe that required oil, I used olive oil. So it was a regular staple in my diet. So I gave it up for health purposes, and within a couple weeks I realized that my legs were not stiff anymore. I had no idea that I was going to reap this benefit. Now it could also be less animal products in my diet being the reason for less pain, but I had already given up all meat and dairy for several weeks before I gave up oil.

I am not terribly strict about oil because sometimes when we are dining out, I can't avoid added oils in food. Oil is in processed food as well. I am trying to cut out processed food, but I still eat some.

So I thought I would share this in case it can help someone.

Vargadoll - I have LE. I went to a physical therapist who specialized in breast cancer patients and she helped me a LOT after surgery, during chemo, during radiation and after radiation. She suggested I wear a sports bra when I sleep at night. So I did that for probably a year or more. Now I really have to keep an eye on my arm and hand and have many different compression things to wear when I need them. Currently, I am able to control it with diet, exercise (cardio and weight lifting) as well as arm stretches and manual lymphnode drainage exercises (I can't remember the exact term for that). I also wear KT tape on my arm all the time. I am happy with the KT tape and grateful it works - so much simpler. Fingers crossed that I can keep this under control. So if you can find a physical therapist who specializes in LE, I think it would help you.

Anyone who has taken a break from Tamoxifen did you have any bleeding after stopping?

Hi ladies,

I hope you all are doing well. Cheryl wishing you all the best with your Tamoxifen vacation! Hope you get some relive from all your pains and can figure out what is wrong. Please let us know how you are doing. I'll be thinking good thoughts and sending you lots of hugs!

I need to vent a bit so thank you all for listening. I went to see my MO today and told her about my shortened periods, mood swings, hot flashes and my ovarian cyst pain. She said to take Tums for the mood swings/PMS and she thought that my periods being shorter were not cause by Tamoxifen. She told me that if my ovarian cyst pain was really bad then I could stop taking T. I'm concerned about my periods being shorter they are down to only 4 days instead of a week. This did not happen before taking Tamoxifen. I know I should be grateful for it not lasting to long, but any change in my body now a days gets me wondering if there is something wrong. I have an appointment to see my PCP later this week so I will talk to her about my concerns and she if she can help me.

What have you ladies done to help calm down ovarian cyst pain? I'm thinking of asking my PCP to send me for some tests to see how big my cysts are because sometimes they really hurt. I want to stay on Tamoxifen as long as I can I've already got one year under my belt.

Thank you Sisters for your help. Okay if any one else wants to vent I'm all ears.

Hugs and Love to all,

Sara

Hi Sara, thank you for the good thoughts and hugs! I would think about seeing a gynecologist in regards to the pelvic pain, maybe there is something they can do for you. I see mine tomorrow for the pelvic pain, seems to have gone away though. Always the way you finally make an appointment, it takes many weeks to get in and by that time the issue has resolved or had gotten so bad you go to the ER. Lol

Tums for mood? I am curious about this too.

Oh Pi-Xi after such a wonderful feeling how did you get yourself back to taking this awful drug? 😂

Today is what day 5 (?) of no pill and I don't feel much different yet. Maybe it's not the Tamoxifen after all?

vampeyes, the first three weeks were fun, then I started to get worried about cancer cells growing, but darn it, I was going to enjoy another week off whether I liked it or not.

runor---the way your mind works is so up my alley! I come from a long line of people with a very odd sense of humor. Sometimes I read your posts to my sister and we just laugh and laugh. We always say that you'd be our first pick to get stuck on a desert island with! Your posts really brighten my days. Thank you.

Runor - have you ever read the Stephanie Plum series by Janet Evanovich? OMG your last post I thought immediately of Lula - made me chuckle, thank you for that!

Pi - I hear ya, I haven't even made it a week and with the amount of time it apparently takes to leave your system wonder if it's even worth the break knowing I need to go back on it. Your post made me smile "whether I liked it or not" lol

Thanks lula - I am almost wondering if I should just bite the bullet and go back on it. You know the funny thing is I haven't (touch wood) gotten the dreadful hot flashes, so maybe I should just suck up the other SE's....

Hey Sara, I seen the gyno yesterday, sending me for tests - baseline thickening and then checking for cancer due to the bleeding - sounds like those tests are good times! 🙄 I quit being a quitter, doctor didn't like the idea of me taking a break and really what's the point? May as well "man up" and deal with the SEs. Dear God though I was awoken at 4:30 with a nasty Charlie horse in my calf - still hurts! The boys are good, lots of homework and studying this year. I think maybe it's good they are in the same class this year for that reason! How are you feeling?

One other thing is anyone else splitting their little white pill? I have tried taking a morning dose, but I get so sleepy in the daytime. I have started evening dosing but that gives me a headache. I may switch to 1/2 pill am and 1/2 pill pm thinking a more even level may be helpful.

Rah, I split my pill. I take half a pill a day. On Sunday and Wednesday I take a whole pill. If I get a recurrence and die everyone will say it's because I didn't take my full dose. Bullshit. No one knows how much of a dose we need, or don't need, to be effective. The lowest effective dose was never studied and is completely and entirely UNKNOWN. So am I risking my life taking half a pill? No one can say with any authority. The evidence for or against does not exist.

On half a pill most days and a whole pill two days a week I have had the full meal deal of side effects, which I call EFFECTS, because there is not much 'side' about them. My hair falling out is an effect. Hot flashes, effect. Leg cramps, effect. Hair on chin, effect. Drippy bladder and lady bits that are sometimes like the Sahara Desert, effect. Side effects is a misleading term.