Bottle o Tamoxifen
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Hi All - Took my first Tamox going to bed last night!!!!
Finished surgery, chemo & rads. Saw my onc on Tuesday and got my script for tamox. He says that after two years he'll "check me out" and then I either move to a different med for 5 years or stay with tamox for another 2 years and get "checked out" again!!
I had residual pain in muscles and joints since taxol chemo finished 7weeks ago. Onc told me to take paracetamol 4 times daily now as the tamox could aggrivate this pain. Today is my first day post rads. I feel a bit odd - I have no appointments until the end of Aug when I go back to the onc again to let him know how I am getting on with the Tamox. I must try to lose weight as I am obese - how likely is this on Tamox? I'm not very active but I will try. I have been taking a short walk daily for the past 5 weeks but I imagine it's too slow and short to be doing any good (mind you living in rural Ireland I always seem to have wind and rain to contend with!!!). I might try the Wii Fit too. Incidently I was 45 when diagnosed in Jan but have turned 46 since - pre-meno too.
Just as I was paying my onc's secretary for the visit he stuck his head around the door and told me to get my bloods done before my next visit as my calcium level was up in the last few and he wants to keep an eye on it in case I have hypercalcemia??? I hadn't a chance to question him about it so I googled it when I got home but I could only find reference to it in connection with bone mets - should I be concerned??? There is no point in saying contact him about it because he'll just tell me I shouldn't have googled it - his opinion is that there is too much unqualified info on the net (which I agree with to a point).
Anyway I am feeling very adrift and wold love your advice and support. Thanks to all who take the time to read this.
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So great to connect with you all from different locations worldwide!
Ainm--I haven't been to Ireland yet but it's on the list! And any walking/exercise you can do is better than nothing. You might try the Motivation thread (not sure which area it's under). The ladies are great and we all motivate each other to get out there and do something. Studies really show exercise really helps reduce future BC risk. But give yourself a little break as you just finished rads...
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Ainm--just looked and it's under "Fitness and getting back into shape"--if you are interested...
have a great day all!
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Hi all!
Mary, Great News on the CT!!! YAY!!!!!!! Now for the bone results...keep us posted.
Helena, I hope you have a wonderful time in Melbourne, by the way the area you live is incredibly beautiful! Gotta get there someday for sure!
Ainm, welcome to this part of our "journey"...sometimes I just hate that word. It is an odd feeling after doing rads everyday to being 'free' from those appts but being left with an almost lost feeling. Try and exercise each day as the experts say 30 min a day will cut our chances of a recurrence by 50%!! Every bit you do does help. Don't be too hard on yourself right now. Your body needs a little healing time from the treatments. I started walking just 2 min after finishing chemo, that's all I could do, but a couple of coworkers encouraged me and said 'hey 2 min is better than 0 min and add a minute to that each couple of days, so that's what I did. The WII fit sounds like fun too. Focus on the positive, the things you can achieve and you will feel better. Not sure about the hypercalcmia thing?????? The internet can be confusing and conflicting...I was told the same thing by my surgeon. Hang in there and have a good day!!
Hugs, Kari
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Allie - I'll try that motivation thread. I was pleased with myself today. I took a half hour walk and I did half an hour on the Wii Fit (at my pace!!!). Next I must tackle my eating habits - I really need to stock my cupboards they have been neglected over the past few months. It's good to hear Ireland is on your list. Of course I'm prejudice but I think it's a beautiful country - even with the wind and rain!!!
Kari - When I was on chemo I used to walk around the outside of my house using the wall for support!!!
I just had a beautiful basket of scented flowers delivered from a neighbout to mark finishing my treatment!!! What a lovely thought.
Thanks for your encouragement.
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Ainm, welcome aboard, sit back and enjoy the ride. I have noticed that the s/e's are worse when it is time for my cycle. I started my period today( my last period
) and for the past week, I have had hotflashes and I have been irritable, which could just be normal PMS!No bone scan results, but I will call surgeon friday!
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Artemis: Referable to Wellbutrin and Tamoxifen - this article is written by the two pharmacists who literally wrote the handbook used by the medical profession regarding drug interactions:
http://www.hanstenandhorn.com/hh-article03-09.pdf
And Meg is right about slowly weaning off if you are going to not switch to a new AD. My friend's doctor told her Wellbutrin is one you really want to wean off very slowly.
So, I am new to this thread - a busy thread indeed about a silly little old bottle and the happiness it brings to all of us. It is a love and hate relationship I have with this little bit of necessary evil in my life. I have been so busy with breast reconstruction, I have been in denial about how I really feel on a daily basis. I feel lethargic, fatigued and like an absolute SLUG actually. If I did not have a husband who keeps me on my toes, I could easily stop washing my hair, wear the same clothes day after day and just become a bag lady. I am post-menopausal [mid 40's] but on Tamoxifen b/c I refuse to take an AI. I have severe osteoporosis in both hips and was diagnosed at age 54 with these bad bones. Five years later, doctors are finally interested in finding out why this might have occurred. Blood tests showed significant Vitamin D deficiency. Oh duh, oh duh, oh duh!!! So I am on prescription dose of 50,000 i.u's of Vitamin D in once weekly doses for twelve weeks, but I retest in Sept. So I just do not know how much of this lethargy and fatigue is due to the Vit D deficiency, the tamoxifen three surgeries in the past nine months, or a combination thereof. I have had seven doses and I don't notice any difference yet.
Do any of you feel you can attribute fatigue or lethargy to Tamoxifen alone? My onc tells me she has not had any other patient describe this level of fatigue or lethargy due to Tamoxifen. I admit I have had exercise intolerance and modest intermittent fatigue for a few years prior to the dx of BC last October, and just thought it was aging and that it would be my new normal. But either the Tamoxifen has hit me like a sledgehammer, or there is something else going on [apart from the Vit D def.]. I have had stress tests and every blood test known to man and nothing but the Vitamin D issue came up.
Thanks for listening to my diatribe....I am going to read through and see what further information I can glean through these many posts.
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Meg - Well, I was exercising three or four days a week after my BLM in Oct., but I started feeling so fatigued and lightheaded during the workouts I had to cut it short and go sit and wait for my DH to finish. It got so annoying and frustrating...I just hated going to the gym, knowing I was going to feel wretched half way through the workout. Then I had my revision surgery two months ago and have not been back to the gym since. Oh, I walk the dog and go up and down the stairs here at home twenty times a day...but it just perplexes me. I am going back to the gym tomorrow, even if it means I take a nosedive on the treadmill. Thank you for your encouragement!
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Is there anything we can do about hot flashes? I'm just dripping with sweat most of the time.
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Whippetmom, are you eating before you exercise? If your body runs out of readily accessible fuel, you will feel done in. Try eating a piece of fruit or something else light, but with about 15 or 20 carbs shortly before you exercise and see if that helps keep your energy up.
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Whippitmom,
When I took the Tamoxifen I felt like I had the flu. Every day I took it it got worse. I took it for 6 weeks. One day I told my husband that life was not worth living if I had to feel that way. I was sleeping 4 hours during the day, My feet felt like lead, I had 0 energy, It was hard to lift my arms. Hot flashes, crying, feelings of worthlessness, even suicidal thoughts. Immediately upon quitting it within two days I was feeling better.
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Renee, there is no releif for the hotflashes that I have found yet, except a nice cold shower. I have found that my hotflashes are much worse just before and during my cycle. Good Luck!!!!
Whippetmom, not sure what your tx was, but when you consider our bodies have been through the mill, fatigue is common. During rads I was coming home from work and going right to bed. I am still struggling w/ fatigue. Good luck and welcome aboard.
To all have a great w/e.
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Well ladies - I will be joining your group. I took my first pill this morning (they have been sitting on the counter for a week). How long do you have to take it before the side effects kick in? I am really nervous about them - especially the hot flashes! I'm glad that I can come to this board for some reassurance along the way. It has helped me so much since my diagnosis.
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whippetmom--I agree. I think you are doing too much too fast if you are getting lightheaded. Try just walking on the treadmill for a while until you build up strength.
don23--welcome! I also was freaked out about starting tamox. I would try to stay positive and not anticipate SEs (so you don't bring them on yourself!). Many women don't get any SEs or have light ones. I've heard sometimes the SEs come several months after you start taking it. I've been on it 5 months and have nothing yet. Am crossing my fingers!! Good luck to you!
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Thank you everyone....Lydia has described JUST how I feel. I think I just need to push through this lethargy and do what I can to overcome it.
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Renee: Neurontin/gabapentin worked wonders for me for hot flashes. Its helped the neuropathy a little, but really helped the hot flashes. They are slightly decreased in number, but mostly shorter in duration and less intense. I know some women swear by Effexor. We did neurontin for me because of the neuropathy.
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Ok tamoxy ladies---have any of you developed ovarian cysts from tamoxifen? I just got back from an ultrasound and found out I have two on one ovary.
ALSO, apparently I have a few uterine fibriods that I never knew about. I hope they stay small and don't call any attention to themselves!
For those who have had the cysts--let me know if it is a watch-and-see kind of thing...I think that's all they need to do, but let me know. Thanks!
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AlliM22,
Ding, Ding!!!! I don't know your history with your monthly cycles, but mine have become increasingly more painful due to the fibroids (I have always had painful periods). I have developed either 2 simple cysts on one ovary or it could be a septated cyst. I am probably going to have a TAH/BSO (complete abdominal hysterectomy but would prefer the lap ooph and vaginal hyster) in September. MY experience with tamoxifen has been a fairly easy train ride except for the uterine issues that have come up. My endometrium has tripled in size due to the fibroids/polyps that were found during a TVU with saline. Mostly, the docs will want to do the wait and watch path. Tamoxifen does weird things to the uterus and ovaries. In fact in actually produces estrogen in the uterus and ovaries - it used to be used as a fertility drug (in larger doses, I think)
Hugs!
Trish
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My friend just had a meeting with onco who advised her to take tamoxifen because of her LCIS on good breast( not cancer). She had a simple mastectomy on other breast ( ER-, PR- ) . She is confused because of her ER- and might not benefit with tamox at all. She is also worried about the SEs esp she had issues with postmenopausal bleeding etc.
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Thanks Trish--and good luck with your procedure! I actually have had an easy ride thus far with my "parts" down there--regular periods, etc. I hope that isn't going to change now!
Isn't it funny that tamox actually stimulates some estrogen receptors? (Funny strange, not funny ha ha....not much of this is funny 'ha ha' is it?!
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whippetmom-big hugs, keep us posted on your progress.
don - I was scared too when I started tamox, but its been ok so far. I hope you have an easy time.
I met with my onc yesterday and she asked if I'd had a period yet (last one was Sept. '08, a month after chemo started)...I said nope...she said "hot flashes?"...I said yes but not too bad, I get them mostly at night and especially in the heat and when I'm thinking about certain things. She said oh yes, anxiety will trigger them in an instant. She will retest my hormone levels next visit in Nov.
Allie - cysts? Oh noooooooooooooooo
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Hello ladies - well two tablets down and nothing has happened!!! Don 23 - we are two newbies to tamox and you asked the question I wanted to ask - if something is going to happen when does it happen!!! I remember my first chemo and rad I was the same - not quite sure what was going to happen and when - you'd think I'd be use to it by now!! Well I hope I'll be se free on tamox - I paid my dues on taxol!!!
Typical Irish weather today - wet, windy but I took my first drive to my local village and even though we got soaked all the locals were anxious to stop me and tell me how well I looked and how happy they were to see me out and about. It was lovely. Called to our local fruit and veg store and stocked up and the butcher told me that he thinks my husband will be please that I'm back on shopping duty!!!!
And of course my 'physic' Father in law just keeps saying how he knew I'd be fine all along - I guess there is no point in being unkind and reminding him that I'll still be taking tablets for the next 7 years and having to pay regular visits to dr and hospital. And on the other side my mother doesn't even remember that I've been through this as she suffers from dementia. I was her primary carer up to jan and then I had to ask my sister to take over - she and mum don't see eye to eye. Mum just seems to think I've become lazy and won't do anything for her!!!!
Family!!
I'm off to bed now - I'll check in tomorrow - Love and light (and rainbow magic)
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Don23, wlecome and enjoy the ride!!!!!
AllieM22, I would not wait and see with the cysts. I would ask for a CA125 test, it may help determine if you may have ovarian cancer. I do not know personally if tamoxifen causes them or not, but I do know that every month when you ovulate your ovaries do produce a tiny cyst which is the ovuum(sp). I tested BRCA2+ and I am having my ovaries removed.
Hello to all!!!!
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Lydia- I am behind here so maybe this has been said already-a LOT of Tamox gals who had really bad SE's tried a 2-5 week "vacation" from Tamox and when they went back on the bad SEs went away. Just something to try since you probably still have some left in the bottle...
don- its a double edged sword: if you get the hot flashes you know the Tamox is "working" and you have an even lower recurrence rate. If you don't get the hot flashes its probably still working and lowering your recurrence rate as it is supposed to. If you never have hot flashes and you're worried that it's not working, you can take a blood test that will tell you. You probably are... count your blessings!
...reyes (I can't get your name right) my pal has LCIS and DCIS and also was told her LCIS is "not cancer". She's now getting advice. But she doesn't have the bad boob your friend does. Maybe the LCIS is ER+, its entirely possible she has two different cancers in her boobs. (Sounds talented!)
kari kari... waiting for you to FB me.. PM me your FB and I will try to FB you!
Hugs and welcome AinM, did you ever see the movie Waking Ned Devine?
anyone with pre-menopausal fibroids... please lemme know if Tamox made them grow or shrink? My ONC says mine should shrink... but yes, Tamox act as a "weak estrogen" for the post-menopausal gals and that makes their fibroids grow. Supposed to be different for pre-meno...
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Hi all,
My hip has been killing me! I've had Burrcides (sp?) for years, but cortizone shots always worked, for about 5years, at a time. When I was doing chemo., my hip reallly started hurting, and when I finished rads., I got another shot. It's not helped with the pain, so 2wks. ago I had an xray. Followed 2 days later, with an appt. with my GP. My doctor, couldn't get his computer up, and said he didn't have the radiologist report, and would get back to me. He said, "I don't think, it's cancer related, but we need the report, before I do anything". What the #@$%!! I don't think everything is cancer related, and was just thinking it was Burnsides for God's sake. I've emailed him, asking what's up and he responding saying well it is taking longer than the usual 2-3 days, to get results, and to email him on Thursday, if I don't hear from him, which I did....nothing. Now it's Friday, and I have to worry during the weekend, and of course my hip hurts even more now.
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Checking in very quickly before leaving work for the day.
Rachel - sent you a PM.
Leggy: I've experienced the same hip issues, but mine was never bursitis. They xrayed me and re-bone scanned me to rule out cancer!! Negative for cancer, showed degenerative joint changes, which my onc said is nothing to worry about. But my hip kills me! I hope you get your good results soon. Try and have a good weekend.
Shout out to everyone else!
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Leggy- welcome to the freakout. I had a question about some "possible inflammatory joint disease" that showed up on my PET/CT scan (even though my ONC and GP said it was nothing, but I thought I'd be getting ahead of some arthritis or something) so I pressed to get a rheumastic (sp) opinion.., first words out of his mouth were "Well I don't think its cancer-" and like you I went from calm to freakout in less than 60 nanoseconds. This rhumatiwhatever doc is a friend of the family, so while my head was spinning back down into my neck he explained... anyway... this was a test of the emergency freakout system...
but.. that taught me, from now on, any time ANY GOOD DOCTOR is checking out ANYTHING on me, they're going to be checking to see if it's cancer first. Sucks but it's better than them faffing it off and dismissing stuff.
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Allie-----yes, I developed large ovarian cysts while I was on tamox (also uterine fibroids but gyn wasn't at all concerned about those, only the ovarian mass--he initially was concerned about ovarian cancer), but it was discovered very late. I had severe abdominal pain--had ovarian torsion and rupture--ended up with TAH/BSO and immediate surgical menopause. My GYN said is wasn't caused by the tamox; if it was I'm sure it was a very unusual occurence. I'm glad to hear you are being monitored by TVUS (I might have been able to avoid surgery had they let me go for a TVUS when I requested one earlier); most women tolerate tamox very well with the most common SE being hot flashes. (other than the ovarian cysts, I did very well on tamox; continued on it after my surgery as well).
Prayrv---praying your surgery can be done laproscopically--the recovery is much easier and less painful.
Anne
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Hey Rachel, your our consultant, do you think 2 weeks, is a long time to wait for an x ray? I just keep thinking the waiting room was empty when I was there, and I got right in...I don't know, I seem to always, get lost and feel like I always have to be proactive. This doctor has always, been good about getting back to me, until this.
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