Bottle o Tamoxifen
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Runor, sending you hugs.
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Runor, At our house we now serve all our meals with a side dish of hair! I also have what feels like spiders 🕷 on my neck, arms and laptop. I got a new Passport picture and the light shines through my hair to my scalp now. Thank God my hair was thick to start with. I also bought some head scarves to keep the sun off my scalp. I am a cancer magnet and have several types of skin cancer too and the last thing I want is cancer on my head. We bought a robotic vacuum cleaner & named her Hazel! She happily travels all over the house filling up with my shedding hair. Thank goodness 😅 for modern tech. If only she could clean the hair out of my shower & sinks.
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ThreeC, I had to make these little curly cues of pipe cleaners that I drop in the tub drain to catch the hair that was clogging the drain. It sticks to the pipe cleaner and every few days I yank the icky, hairy one out and drop a fresh one in. Keeps me from having to dig it out with my fingers. Hair clogged plumbing is no laughing matter!
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This tool was made just to pull hair out of the drain. My DH uses them at the rental properties. You can find them at most stores in the plumbing section. (Even Walmart)
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Ladies, trust me, catching hair in the drain and/or serving up sides of hair beats the alternative: having absolutely no hair and no known cure for it! If your hair is still growing, despite shedding, you've got something good going!
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Hi Everyone,
I was on Tamoxifen for 6 most with a number of different side effects, bone/joint pain, aching lower back for 3 months every day. Sadness, blurred vision and double vision, and just ached all over. After a back x-Ray, and whole body bone scan and finally a CT scan it was determined that I had arthritis in the back. All the other sides effect seem to calm down or even went away. However, I still get a dizzy spell around 1x amount which starts with a popping in my ear then ringing and a 4-5 seconds of dizziness.
I am no longer on Tamoxifen as June 7, 2018 I had a total hysterectomy and started Arimidex. I have been on Arimidex for two months and still experiencing the once monthly dizziness. I spoke to the oncologist about this but he was like okay, but ordered no tests. How long for this to wear off. Is it more related to a lack of hormones and does anyone still have intermittent dizziness after taking tamoxifen or arimidex for over 8 months? Thanks everyone for any insight.
Humblepeace
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I had a colonoscopy last week and was on week 2 of some very heavy antibiotics and I didn’t stop those or the Tamo. I think one drug they don’t want you to take is a blood thinner. Incidentally, I discovered it’s a bad idea to do the colonoscopy prep while on antibiotics but my colon passed with flying colors so that’s one body part I can ignore for the next 10 years, lol.
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Congratulations ReadyAbout on a good report concerning your colonoscopy!! 🎉
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Humblepeace, as I was reading your post my first thought is that you are having a sinus issue, not a tamoxifen issue. Are the two connected? MIght be. But popping, crunching, crinkling sounds in my head went on with me in my early 40s (I was not on tamoxifen then) and lead to almost complete deafness in my left ear. Maybe have your ears / hearing checked, make sure there is no sinus infection or allergy to something.
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ReadyAbout- congratulations on a good report! The "party" starts today. I have got my jello, Popsicles and broth ready. Going to play with the grandkids this morning. That will keep me busy!
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Update on the name brand Tamoxifen. Just over 2 months on it now and the SEs are becoming a nuisance and literally a pain! Woke up today to a Charlie horse in my calf, and yup I am taking magnesium daily. I am weakened walking upstairs, need to rest once I get to the top. I am nauseous almost on a daily basis. I had severe pelvic pain four 3 says just week - not peroid related and different than regular cramps. I am seriously ready to throw then away. This is the second brand and it's made no difference.
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I’m back on tamoxifen for two weeks now. Doing half dose all days but two. So far I feel better than I did when I took my “break”, but still have many annoying SEs. I see my BS today and will talk to him about them. The worst are tingling/numbing sensations, hot flashes and just this mental fog and inability to concentrate. However, if I can get assurance that’s all of the these symptoms are indeed tamoxifen related I will do my best to stick it out. I think my anxiety makes the SEs worse. Cancer induced anxiety, obviously!
On a positive note I finally got around to giving melatonin a try for my sleep issues and it works great. Hot flashes still wake me a few times a night, but I can get back to sleep.
Vampeyes- that sounds horrible. In my opinion, quality of life is extremely important. I know it is such a hard decision to make, but you need to gather all information and dowhat is best for you.
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VL22, glad that things are looking a bit better for you. Vampeyes, sorry that it is not the same for you. IT is miserable feeling miserable. And those leg cramps are no joke. When I get a bad one, I have the after pain for weeks and then it's always threatening to go off again. I hope I never get one when I'm driving!
I am feeling down today. Just went to the clinic to pick up 3 urine sample bottles. Doc is looking for more cancer. He didn't say that. But that's what Cytology does - looks for bad cells, mostly cancer. I don't think I have bladder cancer. But I didn't think I had breast cancer either. I feel foolish for allowing myself to believe that 'we got it in the early stages'. Truth of the matter is that I could have had that cancer for years. It had been 9 years between mammograms, so it could have been percolating away in there for a long time. At any point in that time it could have spread. It was a 2.5 cm tumour when they took it out. Not small. No lymph node involvement, but my surgeon only found one, lone node to submit for testing. So, I think the possibility for error is high in my case.
How do you put this shit behind you when it keeps going on? When people tell me I have to 'get on with life' I seriously want to throat punch them. I would love nothing more than to get on with life, like it was BEFORE I had cancer. Life before did not involve so many mammograms and doctor visits and tests. It's like reminders of this disease, of my reality, come blasting in from every angle, every day. Then I have some moron telling me, with well meaning intention, that I just have to find a way to live. I KNOW that! We ALL know that! But I take it much, much better from people on this site who have the same struggle I have, instead of from someone who literally does not have a clue.
I am feeling very sorry for myself and trying very, very hard to keep back the terror that is pounding on the door. Even 'just looking' hurls me into pure panic. I KNOW there are bears in the woods. One ran out and took one hell of a bite out of me. I am maimed and walk funny. I do not want another bear to rush out and bite me again and I am fully aware that that is the threat I live with for the rest of my life. Sorry for being such a turd. Maybe I need a nap. Or Alcohol. Or both.
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Runor: You can punch them in the throat for me, too. Especially the ones who say 'Just be POSITIVE'. Ugh.
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life is all about choices.
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mollie-are you related to my DH? He says that all the time to the kids.
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Molliefish, I think life is about choices in the things we do have control over. Some things we have no control over. I did not choose to have cancer. Cancer was not a choice. It was handed to me. Blam. Like a punch in the face from a stranger. Walking along, minding your own business, when for no reason that you can see, some big guy runs out of the crowd and just hammers you in the mouth. Tinkle, tinkle, go your teeth as they fly all over the sidewalk. Life is a choice ... one should choose to smile and walk on as if nothing has happened. Is that the choice? One should go to an emergency room and have their gums and nose stitched up? Is that the choice that should be made? Should one make a fist and hit the big, dumb SOB back? What, EXACTLY is the meaning of 'life is about choices' when a physical violence has been handed to you? Are you telling the person with no teeth and a bloody face that they CHOSE to be hit in the face by a thug? Is this helpful to them at that moment? Or would a handkerchief to bleed into be the better offer?
Yes, life is about choices. But when I hear that bumper sticker hanging out there in space, ignoring the context of the situation, it also smacks of simplistic denial of reality. It's a slogan. There is some truth to it but it is also used as a way to gloss over and neutralize a situation. It can be cruelty wrapped up in the orange robe of eastern mysticism. I and everyone who has had this diagnosis, many of them in worse shape than I am, make a choice every day to get out of bed and get on with it. Choices are made in the face of very bad feelings and fear and sadness. So if someone tells me they are weary of the medical process, worried about what will be found, unable to process this potential new development, and I tell them life is all about choices and they throat punch me, I have it coming.
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Hi
I wanted to thank you all for your advice and help along my Tamoxifen journey. I sure am glad to have you all to turn to for the next 5 years whenever I need to vent about side effects or just to learn from what everyone else is going through.
Today my Tamoxifen was acting up really bad at work my ovarian pain was the worst and would not leave me the hell alone. Thank you for listening to my bitchy moment.
Runor: So sorry that you are going through so much shit with the big C. I don't like it either when other people try and make you feel better by staying positive. Sometimes is helps to just say this all sucks and learning to live with our new normal is the hardest thing in the world to do at times.
How is everyone else doing with their T side effects and life in general?
Hugs and Love to all,
Sara
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runor, so sorry you are having a hard time right now, i haven't figured out how to "move" on how either. I ask myself daily if there is a way? And hate when people tell me " oh I am so glad you are back to normal" really? Keep us posted about the pee tests. Hugs
Molliefish, you are so right, life is all about choices, since I was diagnosed my motto is actually " life is what you make it! "
I have my 6 month checkup with my MO today. I have a whole list of stuff to bring up.
My SE have evened out, but still suck. I think the worst one is the damn headache and body/ joint pain.
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Hey Sara, OMG can I relate to those pains, mine took a few days to go away, I do hope that you have relief now! How is school going? Must have been one heck of a crap day yesterday teaching in pain, so sorry you had to go through that!
Runor- maybe she means life is about choices and our choice to take the big T or not to take it? It's one of the few choices we have had in all this. How are you today hun? Hopefully feeling a bit better. My leg is killing me, dear God those charlie horses are nasty.
VL22 - thanks, I am sticking with it so far, but definitely ready to try the half dose or something, I see my doctor the end of the month and will discuss this with him.
Have a great day ladies.
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Hoping for the best for you runor. We all (many of us?) have days when we have difficulty keeping the terror back.
Keep us posted.
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Runor-
Im with ya sister
I find myself SO annoyed with most people these days.I understand its not their fault, but I also stopped discussing with people because they dont get it and I dont expect them to. I just got sick of hearing, "You're the strongest woman I have ever known, you've got this." Or any other comment like that. I think my husband is starting too understand a little better. He always asks me, "What do you need from me right now?" He understands my emotions and when I need a hug or someone to bitch to or when I just need to lay wrapped up in him while he strokes my head or back. Hes beginning to understand that I have two lives....one before cancer and bow this one....THE ONE that screwed up everything. Yes, at some point I will be able to move on, but it will never be the same....example:We have two girls. 12 and 9. Had em in for the yearly check up last Friday. The nurse and pcp know us well, but had to ask, "Any new family history?" Was not prepared to answer that. I sat there in silence trying to hold back the tears. She notices and says, "Meara, I already have that down, you dont have to say it." There are SO many things that are different now. My genetic testing came back 100% clean, which I should be SO happy about, and I am.....but that also is another reason to make me angry....I should have NEVER gotten cancer. So now not only do I worry about recurrence for myself, I worry for my beautiful little girls....because I was never supposed to be given this disease. It isnt just the cancer......it is every other aspect that gives anxiety, saddness and anger. Some women cannot put a smile on their face and be happy after being diagnosed. Some need it to be over before they can even fathom moving forward. Cancer ripped my life straight out of my grip and that pisses me off and has made me weak. Is that my choice? Sure is, but I cant act like the superwoman I once was right now....
Runor- message me if you need someone to talk to 💕
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I woke up with a massive cramp in my leg today too, and came here to read. Runor, I'm sorry you are going thru this. I had endometrial CA diagnosed a few weeks after my BC, then they thought I had kidney cancer b/c of a cyst on my kidney, then bladder cancer (which I have had multiple cystoscopies), then my thyroid removed because the biopsy was suspicious, but not conclusive. In the end I had 3 different primary cancers, and multiple procedures during 4 surgeries in 8 months. I was scared most of the time, but tried to.keep working (I work with disabled kids) between surgeries. I do a lot of yoga and mindfulness activites, and do a lot of exercise (sometimes it was slow laps around my house) to keep my mind from taking over, and getting so scared I could not function.
I was on a wilderness trip with my childhood best friend, and every time we got into trouble with our equipment, weather etc, she would say "let's continue forward, collect more information, then make a decision" then repeat until we find our way. That idea still work.for me. Sending you virtual hugs!
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Everyone, I am sorry if I made it sound like I was about to topple over. That is not the case. I have been quite happy lately. In fact have had many moments of quiet bliss in the last couple months. I found myself saying, I am here and this is good, I am here and THIS is good (usually this involved a cup of coffee and chocolate bar, nothing too grand). But I do believe the gold in life is the little things that we don't always pay attention to.
However this new potential (nothing certain yet) development really has me down.
I may be fine. I may not. The choice I have is to find out. Which I am. Just not happy that I am in this situation. Again.
BCSilver, I love what your husband says, "What do you need from me right now?" That is exactly the right question. Because sometimes just a big, long hug is exactly the right thing. I also hate "you are the strongest woman.." Blah, blah, blah, no I am not. I am a woman who got sucked into a vortex and got hurled around the system, chewed up and spit out and know that I might get sucked in again at any moment. I am not strong, I am bewildered and confused. My lipstick is smeared, I broke a nail and my hair is seriously effed up!
I am grateful for this place where we can let it all hang out. I sometimes feel that I cannot talk to those close to me. They simply don't get it. They want it to be over already. But it's not, as this new testing points out. It sucks for everyone.
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2FUN, your childhood friend sounds like a solid, sensible person. That is some excellent guidance! Move forward, collect information, make a decision. Yes!
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Haha! Maybe I am related distantly. 6 degrees of separation and all that. Sorry Runor. I know it's hard. I didn't choose to get cancer either but I chose how I would respond. And you have too. You've added such a great perspective to this group. Cancer sucks ass.
I could have added some context but don't want bring down the group or be morose. Let's just say, for Me from My life experience, life is a series of decisions we make based on our circumstances.0 -
I say we throat punch them in the nuts with our trucks! (My friend says that all the time. If it’s about a girl I say... but I don’t have nuts. He always laughs and then says, well ya don’t have boobs either and that isn’t stoppin’ ya) 😉
Choices, choices... I choose Appalachian Apple Pie Moonshine. AND a nap!
I’ve been having seriously HOT hot flashes. I don’t know if it’s because I’ve been so active or if it’s because it’s summer or if it’s a normal Tamoxifen SE but they have gotten ridiculous. And I sweat a LOT more than I used to. If I could, I’d be in the shower 3 or 4 times a day. I feel so gross. Dang cance
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How do you throat punch someone in the nuts with your truck? I gotta see this!
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Molliefish, I will be honest and say I felt somewhat kicked in the kooch by your response. It sounded a lot like blame the victim. I don't disagree with you about choices. But I just don't see that it's applicable when I am saying that I am feeling down over this development even though I have been trying really hard to not let it get to me. It just did. I put up a fight, but the depression won. It didn't stop me from doing the pee tests. It won't stop me from having the ultrasounds. I can choose how I act in spite of how I feel and I am making the choice to investigate instead of refusing all tests, closing the drapes and taking the phone off the hook. I can feel depressed and still gather information, move forward and then make a decision. You can feel like crap and choose to do what you have to ... that's what I am trying to do. On my good days, I agree, there are many ways we can choose to see a situation. I just wasn't having a good day.
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Hi Cheryl,
Yes, teaching was challenging. I ended up letting the children have fee time to do whatever they wanted to do. Some of my 4 year olds were nice enough to help clean up the table for me after snack time. I was thankful for their help. Today was much better the pain was still there but it was so mild I almost felt some what normal.
How are things going with you? Are your boys still one summer break?
Hugs,
Sara
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