Bottle o Tamoxifen
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Hi everyone I was just wondering if anyone has pain in there finger joints so bad they feel broken ( from tamoxifen) ? I have my thumb and 2 fingers that I can't even bend because of the pain they even swell up on me . Is this something I should check out I have mentioned it to my doc and he just said well we can X-ray it if you want !! I also have a rash on my face that comes and goes and started half way through radiation seen doc and they have no idea what it is she told me just to put the steroid cream on it when I put it on my chest !! I am getting a little upset with my doctors as they make me feel like I'm just over reacting about everything . But this is my life and she had told me that my cancer will prob come back !! Please anyone with a little info thanks !! Oh and the headache 's are unreal I always had migraines through out my life bad ones but this waking up and going to bed with a headache is getting a bit much sick of taking a hand full of pills to make it go away !!!!
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Sherrie, I have that feeling in my left index and middle finger. Mine are not swollen but feel like they are sort of stuck and need to be stretched a few time to go back to normal. Today I had some pain on my left hip that lasted for quite a bit and I have a femur pain that is consistent but not every day. I asked my GP for an X-ray of the femur and after she got the results (all normal) she said to ask the oncologist. it wasn't a good feeling and I understand how you feel.
I am seeing my MO next Thursday and will mention this side effects.
Feelingfeline, I would call the MO and ask to see him/her a bit earlier and explain your side effect on the phone.
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Sherrie so sorry you are having such a rough time. You know I don't think the oncologist should say that to you - generally they present the most optimistic picture and that is the right thing to do because they CANT tell who will be lucky and who will be less fortunate, so it is best to present the most positive outcome and only IF a recurrence happens, only then should the patient have to deal with it.
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Thank you Lolis yes that is what it feels like broken or out of joint very pain full !!! My fingers even hurt just to touch it's crazy !! It's been a year of treatments for my BC and haven't even got my reconstruction done, feels like every time I turn around something eles is starting up !! I have lymphedema in my arm and now all this pain in finger's and headaches !! I just want to be me again feeling frustrated and overwhelmed !!!
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fellingfeli yes I do realize that they can't really tell me the future with out hard evidence but I did tell her to lay it on the line for me !! As I have been through this with my mom and the out come was not good for my mom ! I do think it will be better for me as if you think positive , eat healthy, exercise and the new meds they have now a days are unreal !! It's just some days are better then others !!
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AmyfromMI, I called Mylan again as well and was told the same they also said that the Walmart's in my area should have it. I have called Rite-Aid other CVS's Walmart and small local pharmacies and NO BODY has any Mylan brand in ANY mg. Freaking geeze louise!! Sam's Club said that's not a common drug in my area SERIOUSLY?!?! What planet did they drop from!! I can't believe this!
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Mstrouble, I'm sorry. Best of luck getting it! I think I'm good through June because my insurance requires I get a three month supply. If not, I have a bottle of unopened Soltamox to get me through. I also tried to call the Soltamox manufacturer and kept getting shuttled from one robo menu to the next. Their website is still up and running so I'm assuming they haven't stopped production but you never know. My pharmacist told me they had stopped production thus the switch back to Mylan. Was so thankful Mylan was back in production because Watson sucked horribly for side effects.
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anyone else have the attention span of a gnat these days? I can't tell if it is permanent damage from chemo, or the tamox, or just life. I can't concentrate on a darn thing anymore.
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Hi Jwoo sorry to hear you are also suffering this SE.
You are not imagining it. Here's a couple of links
http://idealab.ucdavis.edu/pubs/papers/eberling_wu_etal_N2004.pdf - This one's a scholarly article but the first paragraph (in bold) is clear enough that tamox has an affect.
http://www.urmc.rochester.edu/news/story/index.cfm?id=3935 - this is relatively recent news about research to find an antidote to the tamox brain SE - unfortunately it's at early stages so probably not going to be on the market anytime soon. However the fact that it is now gaining attention at least means MO should believe you. Am waiting to see MO about it. Will report back.
Quote direct from article on the second link:
"Although tamoxifen is more easily tolerated compared to most cancer treatments, it nonetheless produces troubling side effects in a subset of the large number of people who take it."
So it's not everyone, just a select subset whoohoo, lucky us!!
I was on tamox 3 years before it kicked in but it was so overnight and dramatic I had no doubt it was the tamox as I am not on any other meds and too far out from chemo (thank God)
I will say I have good days and bad days so it's not EVERY day that's bad. And the only upside is it gives you license to blame every stupid thing you do on tamox.
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Hilarious cartoons, feelingfeline! I can so relate. I was fortunate enough to escape chemo so I know it's the tamoxifen causing my short term memory loss and inability to concentrate/focus.
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I take Tamoxifen in the morning after breakfast. I do experience hot flashes and insomnia sometimes but nothing unmanageable. I keep telling myself it's an additional insurance policy. Weight is stable now. We have to be our own advocates. If the SEs are too brutal need to switch to something else. Several other meds out there.
Diane
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We have to be our own advocates.
These is the best advice ever given on BCO and it applies to all things medical.
The system is so stretched and health providers are so busy, that we need to continually advocate for what is best for each of us based on our own understanding of the type of disease we have.
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love, love the cartoons!!!! I just have to laugh!!!!
So after 2 years on tamox, I am having a hysteroscopy soon to see why the lining in my uterus is so thick. Sheesh, another thing. Really!
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I am starting tamoxifen this week and I am wondering ...if the side effects are too horrible to tolerate and I discontinue how long will it take before I feel normal again?
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I was on tamox for almost 2 1/2 years when I quit to many side affects I just could not ignore anymore.
I am almost 4 months out of quitting and I don't feel tired all the time anymore, no insomnia anymore, my joint pain went away with in 2 weeks of quitting . I can finally say I am as normal as can be to our new normal and I feel I have my life back and living it happy.
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yay to having your life back and being happy again!!!!
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Hi all,
Been a while since I've checked in. Just wondering how many other ladies are having memory problems on tamoxifen? I have literally lost a day (of memories) I couldn't remember where my best friend lived, ive had all these weird episodes of old dreams running through my mind (while awake) but once it stops I can't remember what I was thinking of, etc. etc. Anyone else had anything like this? My oncologist said that its not the tamoxifen and had me do an MRI I think just to assuage my concerns but there was nothing on the MRI. I'm not taking anything but tamoxifen and I don't drink so idk what the hell else could be going on? I'm only 30 so this is all very disturbing to me.
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SparkleKat is it possible your MO may not be up to date on this particular SE? From what I've read online it only seems to be receiving attention in the last couple of years despite that tamox has been around for decades. I think because the group of women who experience it is small compared to those who get some of the other SE's. I have had my Mum ring me up and say, "see you tomorrow" and I have had to say "Mum, tell me what am I doing tomorrow?" because I have no idea what engagement I have. It feels like I grope for the fact and just don't get the info back from my brain. Like I said some days are worse than others but I am definitely not the sharp-as-a-tack, razor-brain person I used to be. Reminds me of some of those "not all the dogs are barking", "roos in the top paddock", "the lights are on but no-one's home" expressions, except it's not so funny when it's actually happening.
shelleym1 the most common SE is monster hot flashes, takes a while to get used to, for me they have subsided over time. It's possible you may not experience any SE's. My Aunt did 5 years on tamox no SE's that she noticed so some people do sail through, here's hoping you'll be one of them.
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PS SparkleKat there is actually some stuff on BC.org about this SE, I'll try to find and post a link XX
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Question: I've been on Tamox for more than 5 months now. Most of my HFs are from the lupron which I'm discussing with MO this week. Yesterday, I was at a water park for several hours and had factor 30 sunscreen on. I never even tan with that much but I started to burn yesterday. Had to put my Swimshirt on b/c I'm afraid of any damage to my skin before exchange in late July.
Does Tamox make you more sun sensitive. I know some antibiotics do?
Thanks,
Scottie
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hi ladies,
I know that mental fog is supposed to be a side effect but my onc said "I've been doing this for 30 years and I've never had someone lose a whole day".
So I was just trying to find out if this is a thing, because if it is a " thing" the tamox will be going out the door! Its not a side effect I'm willing to suffer through with no family history and a bilateral mastectomy after chemo. I just don't think my chances of recurrence are that high.
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sparklekat,
Were you really stressed out about anything at the time you couldn't remember where your friend lived?
I had an episode a few years back (not on tamox or anything else at the time) when I was extremely stressed and my blood pressure was out of this world due to issues at work. The episode that freaked me out was that I could not recall a coworkers name with whom I had worked for many years, couldn't remember driving home some nights, etc...
I'm not saying this lack of recall is not due to tamox, I am just wondering if it could be due to extreme stress?
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Yes that's what everyone keeps telling me, "oh its just stress". But I don't feel stressed about anything else other than this. I mean I have a government job, its not like its hard!
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Hi Everyone- I was taken off Tamoxifen for 6 weeks when I had surgery and been back on it about 2 months now and I am noticing I am dizzy especially at night when I am in bed.
Anyone else notice this. I never noticed it the last time I was on Tamoxifen.
Thanks
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I started getting dizzy about a year after I started Tamoxifen but mine is only during the day. I was told that Tamoxifen can cause sinus issues and I'm beginning to think that is exactly what this is. I tend to get dizzy spells when the weather is rainy mostly. Makes me think Tamoxifen may have given me a chronic low grade sinus infection. I have seen an ENT who gave me some spray which didn't help. I use the NeilMed saline rinse which does help some. Who knows...maybe all this is just in my head!!
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I have been taking Tamoxifen for exactly one year now with no side effects until BAM two weeks ago I started getting hot flashes....they are horrible. The only rationale I can come up with is that maybe I am also entering natural menopause now....I am about to turn 46. I wonder if I should ask my MO to check my FSH level?
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