Bottle o Tamoxifen
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I try very hard to fight the down days. But last night, when Hub and I were watching tv and my damn leg cramped up, I lost it. It didn't just cramp up for a minute and then ease off. Oh no. We were in for a good 10 minutes of unrelenting pain that no amount of walking, moving, rubbing, POUNDING, flexing was going to fix. It buckled me over at the waist because everything from knee to groin was in spasm. Hub is looking at me like I am making it up, can it really hurt that bad that you are gasping and moaning.
And then I cried. I just burst into tears. I have had it with this bullshit. Fuck this. These aren't leg cramps, this is ripping muscle off bone. This leaves me unable to walk normally for days. Over and over that same muscle threatens. I live in FEAR of being in a restaurant or shop or driving when that happens, because the pain is blinding and desperate. "Tamoxifen may have some side effects." Are you KIDDING me with this shit?! This is a threat to my own safety and the safety of others should this ever happen when I'm driving !
I am tired. I am stiff. My body has aged. My joints creak and my muscles spasm and I hate that life is not lived from the perspective of all the life I have yet to live, but the death I have waiting for me. Yeah, yeah, I could live to a ripe old age. I would have much preferred to live it without visions of death dancing in my head. I get up every day and act normal. Do the normal stuff. Live life pretty much like I did before. Only I don't FEEL like I did before. And just to keep me from ever getting too comfortable, some unseen hand sinks its claws into a muscle in my leg and shakes me like a dog with a rat.
I am scared to go to bed. Scared to roll over or change position. Scared of my own body for so many reasons. I have proof in more than one way that it cannot be trusted.
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Oh Runor, do I know that pain and you should slap that husband of yours for being an inconsiderate SOB! What you are going through is exactly why I quit tamoxifen for those few short days, it's quality of life vs quantity of life. Have you tried stretching on a daily basis? Not sure if it helps but I am trying this plus squats, anything really! I hope you have a better day today - always here to "listen when you need an ear".
Sara - it's a viscous cycle in that room of yours - flu's getting passed from one kid to the next, to the next. It may be wise for you to invest in a gas mask... hehe
xxx
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Pickles. Pickle juice. The football coaches and soccer coaches swear by it. So I’m trying it. Anything to stop the leg cramps and foot cramps. It’s better. Not gone but better.
In the spring when I was cramping like this it was anemia. Very low iron. Got two infusions. They seemed to help. But they said to expect it to come back.
Rumor, I seriously, physically, feel your pain. I wish I had a better answer than iron infusions and the hope of a miracle through pickle juice. But it’s all I have.
I’m talking to my MO tomorrow when I get bloodwork and all that done for my3 month check. Something’s gotta give
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I completely forgot about pickle juice! It’s what the coaches and PT for my son’s football team recommends. My son had me make him some pickle juice ice pops...add a little sugar to the pickle juice, stir, then pour into ice pop molds and freeze.
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Vampeyes, my hub did not SAY that he doubted my pain, just watched me hobble, gasp and pound my leg as if I was a circus side show. Which, I suppose, I kind of was. He can be a bit thick but is not intentionally cruel. It's like the whole cancer bullshit is foreign to him. An event he can't grasp, can't identify with. And if I'm being honest until it was me on the receiving end of a lumpectomy and radiation and lymphedema and leg cramps and chin hairs - I could not have identified with it either. And now I can't UNidentify with it. In a serious funk the last few days. Serious funk.
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Runor I so get what you are saying not truly understanding life with cancer until you are in it. Sorry the T is grinding on you so.
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Runor- my DH is a fix it kind of guy. If it needs "fixing" he can fit. The one thing he can't fix is me and I think that makes the BC and LE journey hard for him. He's been a trooper and gone above and beyond to help deal with this crap. (Especially the damn LE it's been my biggest issue!)
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Sorry Runor I misread your post about hubby. I hear you on the identifying part, it's that with anything and I try to remember that when some seem like they don't care - more they just don't understand. I am sorry you are in a funk, is it just the pain or is there more to it? Tamoxifen can mess with depression, my last MO was quite concerned about my depression and Tamoxifen, so much so that everything thing I brought up to him was all my depression talking. (So I fired him and got a new one). I can't remember if you have tried a different brand of Tamoxifen? Could be worth a shot that maybe some of the fillers in your current brand are causing the leg cramps. Sending you some big cyber hugs.
xxx
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Hi Sara, hope you are feeling better. I have days like that also. I work in a dorm and I cried all day 2 weeks ago. It was horrible, those poor residents had no idea what to do.
My hubby is not a good "supporter " unless i directly tell him what I need. Then he is right there. Some times it sucks, but he was like that when we got married so I shouldn't expect him to change. I cry all the time and he looks at me and says "i don't know what to do" really silly man get me a Kleenex and hold me. Lol.
Only thing I've found that helps with cramps is soaking in Epsom salt weekly. They have tons with scents now. My MO suggested i try it.
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MO said the foot pain most likely isn’t from tamoxifen. He said he had never heard of it. All over joint pain yes, specific just to feet no. So, going to see a podiatrist to see if it is something more body mechanical based than medical based.
Won’t get bloodwork results for a few days. Bleh. I was hoping for some hel
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It's interesting - I had surgery to remove an infected TE last month and the PS told me to stop Tamo one week before and after surgery. (Actually, I called his office and asked about it, because organizationally speaking, he was a train wreck.) I now have a new PS and will have another surgery in a few weeks and this PS says to stay on Tamo. Sheesh... You'd think they would all get on the same page at the yearly conferences...
I met with the onco last week - I haven't had a period since 6 weeks after starting Tamo so she is going to test me for menopause when I go back. Yay. Said they might switch me to AI if that's the case - I assume those side effects are equal to Tamo, ¿yes? The one bright spot in our conversation was her assuring me that my nightly beer or glass of wine is just fine. I was going to have some compliance issues otherwise.
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Hi ladies, I am a quiet reader of the boards. I do not post that often. I had my exchange surgery a couple weeks ago. It seems everything is great! I am lucky. I decided to only have a right mastectomy. I have been off ofTamoxifen for 3 weeks for the surgery and I have to say I feel great. I have come to realize the tamoxifen really affects my personality.
I have a couple of questions for you ladies. Does the fatigue and irritability decrease as you get use to the medication? I was on it 3 months before my exchange surgery. My MO made it sound that if I had a prophylactic left mastectomy then I would not need to take Tamoxifen. I have noticed that lots of you ladies who have had both sides done are on it, I was curious what you were told? I am seriously considering going for the other side if it means stopping this medication. I am just not myself, but also have anxiety about a reoccurrence. Thanks for any insight
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TaRenee - As for the foot pain, there are a lot of us women who are getting it, I wouldn't think it to be a coincidence that so many of us are suffering with it. I don't think they know or have listed all the side effects of this wonderful drug. Just my two cents.
Ready - I believe the AI's may be worse as they can cause bone thinning, osteoporosis, if you are doing ok on Tamoxifen you may want to stay on it.
Skiboots - Unfortunately you are ER+ so that means Tamoxifen or an AI (if past menopause) whether you have a mastectomy or not. Of course it is totally your call on the matter, but hormone receptor-positive breast cancers need estrogen and/or progesterone to grow. Tamoxifen attaches to the hormone receptor in the cancer cell, blocking estrogen from attaching to the receptor. Unfortunately it's not just the breast tissue that gets breast cancer, tamoxifen can help with Mets.
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Ready - I found the AIs had similar SEs to tamoxifen but far less severe.
Skiboots - Yes taking tamoxifen can affect your personality. It’s unclear if it’s a direct eff ct of the tamoxifen itself or the change in estrogen levels which in turn affect the activity of serotonin, norepinephrine, and/or dopamine in our brain. You may want to discuss trying an anti-depressant with your MO or IM. Just a low dose may help get those levels back to normal.
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The medication suppresses your estrogen which is what feeds your breast cancer. Double mastectomy does not guarantee no more breast cancer . Any possible rogue or dormant cell is starved of its fuel to grow. try to stick it out. I didn't
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My MO specifically asked me if my feet were hurting, because she sees this type of joint pain frequently with Tamoxifen.
And the answer is yes
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Hi Tamox buddies,
I am going off Tamox and probably switching to Aromasin. How long does the Tamox stay in your system before you can start the new drug? I have been off nearly 2 weeks and meet tomorrow with Oncol to discuss the change of meds. I thoroughly researched Femara, Letrozole and Aromasin in making my decision.
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ReadyAbout- I found this when trying to figure this out as well. It at least gives a decision tree to follow regarding when to stop before surgery—hope the link works!
https://www.journal-surgery.net/article/S1743-9191(12)00091-X/pdf
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Thanks, Cpeachymom!
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Thank you, cpeachymom. That link is a keeper!
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Angelsgal57- when I was switched from Tamoxifen to Anastrozole it was stop one start the other the next night. (Now I'm back on Tamoxifen so who knows what's best!)
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my both legs hurt so bad as well, I really suffer walking after sitting for more than 10 mins, its so difficult as I am a teacher and need to walk whole day, I am literally in pain, Its like my body jumped from 39 to 80 over night
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I thought the foot pain had to be medicine related. I’ve heard quite a few of us here are having issues. I sure don’t want to pay for podiatrist and xrays and all that if I don’t need it. What have any of you found that works? Anything? I did get compression socks (knee high) and I love them. I feel like that may help but I still have the pain. Ugh
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I hadn’t heard that Tamo could cause mood changes- why did the MO never mention this? Could explain why I cried at the orthopedist’s office today. I haven’t cried in front of a single cancer doctor this whole time, but today I was talking to orthopedist about possible hamstring surgery when I suddenly broke down. Thank goodness she’s a woman; she said I was overdue for a cry in front of a doctor. I am much more prone to crying at the drop of a hat and my family is baffled by it. Could Tamo be the culprit?
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Ready- yes tamoxifen could be the culprit. It could also be that you've gotten past the 'Heay lifting' of fighting BC and your body/mind are spent after “staying strong to get you through it" and emotional breakdowns whether crying, anger, etc ensue as the body/mind's way of relieving itself ofthat stress.
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Where do I start...my first time here. First to Runor about the leg pain, I take magnesium at night, and knock on wood my leg cramping is gone. I am on Tamoxifen, started August 25 of this year, and man my brain is bouncing all over the place, I can't stand it. It makes my mind race, and get off the wall things popping in my head, plus guilt but not understanding where the guilt is coming from. I haven't broke down and cried yet. Oncologist says not to drink alcohol at all if I do then just one cocktail. He also says to get my heart rate up when exercising. Neither of which he explained why. But I never asked him either, I kind of don't like him. I am in search of a breast cancer group, might have found one to attend to, I just feel like I need to relate directly to a human being. I am so unsettled. No hot flashes but it might be due to that fact that I am way past menopausal state, just guessing. Thanks for listening....
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Lin Lin - “I kind of don’t like him” - for some reason that made me laugh! I kind of don’t like my MO either, but I think I’d like her if we met under better circumstances! My mind is all over the place too - I cannot concentrate at all, which is annoying and sometimes embarrassing.
So my joint pain moves around - does anyone else have that? Usually my feet, but this week also my one hip? I’m really trying to stick to my running regimen, but it is difficult. I see people say magnesium can help, but my diet is very high in magnesium already.
I went hiking with a friend and she noted that I was moving slower than before I had cancer and when I complained about pain, she said I sounded old and that she didn’t complain like that when she was my age(she’s 5 years older). Before I could open my mouth to tell her where to shove it, my husband grabbed my arm and I let it go. She was messing around, but it pissed me off
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I don't think any of us can truly appreciate the impact this medication can have until we experience it ourselves. And know that we all will experience it differently. Makes me feel sad for my Mother In Law who was on Tamoxifen at the age of 75 - 80. She was in the beginning stages of dementia, with other health issues. But she probably couldn't voice or understand if she had any side effects from the medication itself. And I just didn't understand its potential impact. So a little guilt there. Sorry your friend didn't understand the potential emotional impact of her kidding around. Glad you could vent here because we all understand.
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Rah, I think you are so right. I think what is also an issue is that we can be having something weird or new going on and we wonder, is this tamoxifen or is this age or is this something else?
I am having an issue that I am pretty sure I can blame on tamoxifen since nothing like this has ever happened to me before. I am naturally quite limber and stretchy. My chiropractor says I'm great to work on because I pop into place with no effort. Unfortunately I also pop out of place because I am loosely connected. Could do the splits well into my 40s.
Early this spring as I was working outdoors with my husband I noticed that my lower legs, from mid-calf to ankle, were stiff. Wooden. No flex. Didn't respond like they used to. My walking got trudgy and clumsy. My lower legs cramped and seized. When I get legs cramps sometimes, like Egads says, my feet twist into impossible pretzel shapes. While I scream.
But this almost dead feeling in my lower calves is getting worse and worse and attempts to flex, mostly pointing my toes away from me brings on immediate and excruciating cramps. Standing on my tippy toes, good god, torture!
What about tamoxifen makes your limbs stop working? I am doing some very demanding physical chores lately and my body HURTS. All of it HURTS. Everything I do HURTS. I hope this aching passes in a while. But the lower calves and seized ankles never change. They are new and this is how people fall and bust their hips!
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Runor: I'm sorry to hear your having nasty leg cramps. Check out this link. It is not very helpful in terms of actual advice (in last paragraph) but might give another perspective. I think it from a Turkish university in 2016.
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