Bottle o Tamoxifen
Comments
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Cynthia, Basha, dcbkc, Lynn, and all others,
Thanks so much for all the encouragement.
I have no idea why the back pain... except... When I got my Neupogen shots, OUCH! the back pain was severe! So, even though the drs. won't admit it, I can see where my recent back pain may be connected to the Tamoxifen.
Thanks! I think I will have to have a visit to the bar car later to celebrate!
Harley
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Honeygirl,
That pic is SO CUTE! It cracked me up!!Thanks!!
Harley
Congratulations, Virginia!! Glad to hear that your test went well, too!
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Harley,
Wahoo!!!!!! Positive news on the negative news!!!!! Do you think they practice that -- the docs that is? Making you wait. Anyway, WAHOO!!!!
D
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Deb,
You know, I wonder sometimes... My dh and MIL seemed to think that since I didn't hear back RIGHT AWAY, it was ok. When I got my Mammogram and u/s that showed the area of concern for bc, the radiologist RAN to find my gyn dr., who was in the hospital delivering babies at the time. When I got home, there was a message from my gyn drs office, saying that I needed to get back to her office IMMEDIATELY! But, my pcp dr. didn't even read the report until later, so you can't always depend on that.
Thanks!
Harley
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Yay for no abnormalities!!!!! I've been watching for your post Harley...so happy for you!
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Lori,
I was so scared before, and now, I am just SO relieved! I feel like a huge weight has been lifted from my shoulders!
Thanks!
Harley
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So, last night we had a visit from a Sheriff and he's holding a envelope containing my Tamoxifen. He said that he caught a man who had stolen all the mail in my neighborhood (we have mail boxes at the street) and he was delivering the mail that seemed important. When he shook my envelope, he assumed it contained a rx and that I would need it. Isn't that sweet? I don't know how long it would have taken before I realized it was missing and how long it would have taken to get it replaced, but I'm sure it would have been a nightmare. I could have kissed him (he was a hottie, too) but my hubby was right there. lol
Harley - Yippee!!! So glad x-ray was negative. And, I hope the pain goes away soon! You know...my lower back hasn't been the same since I had Neupogen/Neulasta so maybe it's related for you, too. I mostly notice it when I bend over or try to lift something. Congrats on your first post-tx hair cut.
Lynn - good luck on your weigh-in. We'll be waiting for you in the bar car. I'm glad you finally got your rx.
Basha - I didn't know that bone pain wasn't considered a side effect of Tamoxifen. I just assumed it was since so many of us experience it. I mentioned it to my onc and he wrote it in my chart, but didn't comment on it. It's weird how it comes and goes for me. Some days, I don't feel it at all and, other days I need to take ibuprofen.
Pattis - Welcome to our group! Some women do find that their side effects lessen over time. I hope you find something that helps with your side effects.
Take care all,
Cynthia
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Cynthia,
A random act of kindness -- isn't it wonderful. But if this guy was taking mail, you might want to check out your credit report. You can get one free/year from any of the 3 big outfits. It might be worth it to make sure none of your important info or credit card applications got into the wrong hands.
Lynn,
Good luck on the weigh in! And your trip sounds great!
D
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Cynthia dahling,
Bone pain is a side effect of Tamox. I just think our docs don't like that idea so they pretend it's not. Why, I don't have the foggiest!!!!
Take care, Basha0 -
Cynthia,
That was nice of the sheriff to deliver your Rx to your door! Too scary about people who steal mail, though. I'm glad they caught that guy!
I wonder about the Neupogen/Neulasta shots, and how that may be connected to this back pain.
I think I like the new hair cut, and the color is definitely a change for the better. I really don't know if I want to keep it short though, so I have mixed feelings. One thought I am having is... HOW will it EVER grow back, if I keep getting it cut??
Thanks!
Harley
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Basha,
I wonder where you found the information about Tamoxifen and bone pain. I would like to have some HARD proof, so when I see my onc next time, I can show him. I won't be seeing him again until July, since I have graduated to once every SIX month follow ups... Even then, I will see the onc nurse. YAY!
Thanks!
Harley
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Harley,
My meds guy just got on line in front of me and checked Tamoxifen's side effects. Bone pain was right there. My pharmacist told me the same. I bet if you google Tamox you'll find it in "patient information".
Do we get to see a photo of your new do??
Basha0 -
Hello Ladies,
I'd like to join you all. I've been posting on the radiation threads for a while, but I think I'll be biting the bullet and jumping on the tamox train tomorrow.
I've been reading through this thread as much as possible, but hey, with nearly 900 messages, I think I might be while before I get through them all.
I've been waffling on the tamox, and I have an appt. with onc tomorrow and he wants my final answer. I think I'm going to start, and if I cannot handle it physically (or mentally), then I'll stop. I don't want to head into it expecting the worst. I'm normally an optimist, but this decision has me flummoxed. I'm 43, single and pre-meno and the thought of experiencing meno-like symptoms for 5 years, then potentially actually BEING in meno for even more time just pretty much frightens me. I mean, who really wants to date a woman who at 43 is such a mess? (I know, this is topic for the singles thread, but I'm just on a roll).
Anyhoo, I'm here and I'm willing to try!
Barbie
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Basha,
Thanks! I'll look it up when I get a chance. I'm taking my MIL to the hospital today for an EKG. She helped me when I was having bc txs, taking me to all my dr. appts., so it is my turn again. I also took her before my bc dx for cataract surgeries... I told her, NO more taking turns with you...
Oh, well... I am not very good with posting pics, but when I get a chance, I'll try...
Harley
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Hi,
I've been on Tomoxifen for a year now and I have been through all kinds of stages. It started with feeling sick to my stomach for the first 2 weeks which went away. Now for the last month I'm back to feeling dizzy and sick most of the day. If I don't eat something all the time, I feel bad. I fell like I have a mild flu sensation all day. It is very annoying. Hope the rest of you are doing well.
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Honeygirl -- that is THE cutest picture!!! I want to be on the cat car, with my feet propped up, doing the crossword puzzle, and my little cat curled up and purring on my lap.
As for SE, rxlist.com is a good place to look up complete info on drugs. They had 2 listings for tamox. Under tamoxifen citrate (NOLVADEX), they had a whole page of possible effects, pain, and back pain, musculoskeletal included. (I'm having trouble pasting the link).
Cynthia -- SO glad you got your RX, but I'm worried too about the other mail that was stolen. Ever since mail in our neighborhood went missing, I got a locking mailbox. But then I'm paranoid about ID theft!
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Ahhhhhh..
Meeting w/ medical oncologist today to "talk the tamox talk"...heaven help me!!!
I am still undecided...can't believe how one little pill can bring about so much anxiety.
I wish someone could decide this for me....
Kosh.......
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Hi Lori,
I haven't been on the site for awhile so I am late responding to your question about being on Tamox then possibly switching after its verified you are truly postmenopausal. I just looked on www.nccn.org for the same answers. Its worth reading, click on the patient tab and look till you find your stage. It explains it all.
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Barbie and Kosh,
Welcome! I get how you feel. I'm pre-meno too and the thought of going into it now and then again after tamox is just too much to think about for me right now. This beast, b/c, has to be slain first. I also know that this group has been a godsend for me. I now have an idea of what to expect; if something is happening, I ask these ladies and usually find that I'm not alone -- just that no one had thought to bring it up before then. There IS strength in numbers.
So ladies onto one of the 'fun' cars on this train -- dessert, chocolate, bar car -- you name it and it's there.
Virginia,
Remember when I was talking about rasberry souffles at our favorite restaurant in Palm Springs? Well, I found out yesterday that it's closed! We go there next week and now I'm bummed. I was so looking forward to eating there.
Hope everyone is having a calm Thursday.
D
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I made that last post then finished reading the rest of the messages. I have been on tamox since the middle of Jan. Had a few real strong hot flashes but now they are more mild. Now I'm reading that it could hit me full force at the 3 month mark. YIKES!!! I am also on Lexapro...depression...related to?? who knows...chemopause, middle age (51), empty nest syndronme, finishing the end of treatments??? all of the above?? Anyway I've been on it for a month and its helped. Wish he would have put me on effexor (for more energy!! lol).
I had a chest xray on Monday with blood workup (which they couldn't get from my port). I see onc today for the 1st 3 month checkup. Keep your fingers crossed for me. I'm a little nervous, I've noticed that I find myself taking deep breaths occassionally. I do it subconsciously. Anyone else have that problem?
I have 27 yr old niece who had cervical cancer in 2006 (hysterectomy and chemo) and they just found a 6 cm. tumor on the liver and 1.5 cm in the abdomen! We are so scared for her! She has a 5 yr. old. But it also scares the hell out of me, if she can get it back , maybe I will too! Then I feel so self-centered!
Also while at a meeting earlier this week, I overheard a man talking about his 24 daughter who had just had an ultrasound and was diagnosed with breast cancer. This damn disease is so prevalent!! It breaks my heart to hear about anyone so young. I gave this man this website and the titles of a couple of books. Hopefully they research before their appt. at Mayo.
Well, guess I'll close for now. Take care ladies!
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Hi ladies,
It's been awhile since I have caught up with my tamox friends. I have read through all that I have missed.
Been kinda down lately, not sure if it's side effect from the surgery 4 wks ago or what. Hopefully it will get better.
I saw my oc last week, she said I was dehydrated, and wanted to hook me up and pump fluids into me. At first I said ok..then when I realized that I would be sitting in one of the chemo chairs...I said..NO...CAN'T DO THAT! So I promised to go home and hydrate myself.
She then ordered me a bone scan. I have had so much bone pain in my arms, hands and lower legs. I mentioned the tamox to her, as that being the culprit. She said, not that she knew of, so she said...wait..let me do some research..she came back and said...it was a higher percentage amount than she suspected. She said 6-9 % of women experience bone or joint pain from tamox.
So see ladies...we are not loosing our minds!
As for the bone scan, I haven't gotten the results yet. But the tech, told me it all looked good.
Take care everyone....and have a great day.
I will try not to be a stranger. Hopefully, my old self will return.
xoxo
Lisa
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Hey Livinginboji,
I used to take Lexapro too but I found out from the fine ladies at this site that it is not recommended with Tamoxifen so I switched to Effexor. My oncologist didn't tell me until after I asked but he concurred with the ladies on this site. I often feel I learn more here than from the doctors. Good Luck!
Nancy
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Nancy...I sometimes think the ladies on this site know more than all my docs put together. lol
Cheryll!!! Good to "run into you" again in this big ol' community. lol I really appreciate you posting that link for me, I'm off to read it now. I meet with my onc next week so I have some studying time. Even though he may not like it, I'm pretty positive I'm going to stick with tamox as long as possible. I just need a little more long-term studies to be done on the AI before I feel comfy with them. Even though I know that my oncs on the bandwagon.
Kosh...good luck with your decision!
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Blinx,
I went to that website and there was some great info. Thanks for the heads up.
I see the med onc after spring break so I'm getting my questions together and that info really helped. I have to do blood work on Monday before we leave. I didn't know about the possible liver problems until I read that site. Also, I found www.nlm.nih.gov
There is good info there too.
D
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Lisa,
6 to 9 % of women have bone or joint pain... I bet even MORE have joint pain, and I DID see joint pain as one of the se's for Tamoxifen on the patient information...
I hope your bone scan is all clear. Let us know when you find out, so we can do the dance for you!!
Hugs,
Harley
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Illinois Nancy -
I have been feeling like that all day, too... just weak, dizzy, sinus type headache, and I just feel like crap!!
I know I can't do this for 2 years... NO WAY!! I don't sleep, I just am SO HOT all the time!
Since quitting Effexor, I have no help whatsoever with the night flashes. This has GOT to stop!! I know my onc meant well, making me stop taking it... after all I have read that we can't take SSRIs with Tamoxifen, because if interferes with absorption... so even though I also read that Effexor should be ok to take with Tamoxifen, I am not sure if I believe it.
But, what's a girl to do??Harley
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Blinx,
I checked rxlist.com and ... nothing. It said the website expired or something... I don't know, but I got no response from my search for Tamoxifen...
Oh, well...
I have just filled the script for neurontin, since my onc says that I can take it for hot flashes, but... there are SO MANY se's listed on the darn sheet of patient info., that I am TERRIFIED about taking it! Also, my dr. said to start with 100mg and go up to 300mg... That sounds like ALOT to me... I am a firm believer in taking the lowest dose you can to help with symptoms, like the hot flashes...
So... I just sit... and wait... because tonight, I will be tossing and turning ALL NIGHT... sweaty....
Harley
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Harley -- check the site again. It was working just a minute ago.
Boy, my brain must have been out to lunch while reading these posts -- I didn't know until I just read today about Lexapro possibly preventing Tamoxifen from working!! I have an appt with my onc next month -- I think I'll ask her for that test (is it a blood test?) to see if I'm metabolizing Tamox. For sure I don't want to go off Lexapro!!
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Blinx,
I am sure you will be ok, since you only just started taking Tamoxifen.I have been taking it since Nov. 2007 and until recently, had little problems with se's...
Good Luck!
Harley
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Hi all,
The patient insert that came with my recent rx didn't say anything about bone pain (of course), so I'm glad I have you guys to give me the facts. It did say, though, that periodic lab/medical tests such as blood counts, liver function tests, pelvic exams, mammograms, and eye exams should be done. I'm wondering if I can have the eye exams with an opthamologist so my medical insurance will pay for it. Seems reasonable to me. lol
Blinx and D - Thanks for your concern about my mail loss. I'm actually embarrassed to admit that we also have a post office box for that very reason and I have no idea why I didn't have my rx sent there. I think that after years of not having any security issues, I just got complacent and like the convenience of having mail come directly to the house. Silly me! And, I'm usually so paranoid. lol
IllinoisNancy, Barbie, Kosh - Welcome to our group!
Cheryll - so sorry to hear about your niece. My oldest just turned 6 and the thought of her and her brother growing up without me takes my breath away. D*mn cancer! Don't be hard on yourself...it's perfectly normal to freak out for ourselves when we hear of someone else's situation.
My3girls - glad to see a post from you. I'm glad the tech told you how your bone scan looked. That was very nice. I wish mine would do that. He's the nicest man, but isn't big on sharing. lol I hope you feel better soon!
Harley - it sucks that you're feeling so awful. I hope you find something to help with the hot flashes. Effexor seems to be the answer so I hope you find out whether it's really a problem. Good luck with that.
Best wishes everyone and I'm in the Starbucks car today if anyone wants to visit.
Cynthia
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