Bottle o Tamoxifen
Comments
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Hi all! Ive been taking tamoxifen since Sept. and putting up with all that it brings, but I have a question about a possible side effect that I have not heard mentioned anywhere. I have had 3 UTIs since going on this medication and I was never prone to them before. Anyone else have or know of a similar side effect?
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Trouble16 - that's a lot of side effects to deal with. You are very courageous! So far the Teva seems fine but probably too soon to tell. Just when we're starting to feel better after surgery, it's a little scary to take the medication and not know if we are going to be able sustain feeling better.
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I have been on Tamox since Jan 2011 and have always had the TEVA. No real side effects to speak of but will be so glad when I take that last pill - Jan 3, 2016 but who is counting??? LOL!
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Thanks for the info - good to know you haven't had problems... I think I'll stick with the TEVA...
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kgb, I had the same thing happen a few months ago, and one of my docs said that it could just be from the hormonal changes happening in the genitourinary system (from the tamox), making me more succeptable....just another thing to deal with.
It sure is an interesting crap shoot with the different manufacturers and our individual side effects. I will try to stick with Teva for now. I don't recall that Mylan was any more gentle to me than this...and will try to avoid Watson.
And thanks for your benedryl info bgirl.0 -
My oncologist writes my 90-day prescription for the generic Tamoxifen but she specifies Teva. I got another brand once and it did not agree with me, and this was my MO's fix for that. Cool.
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Mstrouble, are you understanding that Claritin or Zyrtec have less of a reduced effect on the efficacy of Tamoxifen? And I wonder if either of those would keep my systemic allergic reactions at bay like the benedryl has. I see my allergist next week, and will run this by her then, but if you have any info, I appreciate it.
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Lacey - Am I reading your post correct and you said you are taking Benadryl while on Tamoxifen? If so, did you know that Benadryl is a big no-no with Tamox? I asked my MO about it when I first started and he said definitely no.
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Jo, I do not take benedryl in any routine way while on Tamo, (and was sad many months ago to learn that it would not be an option to help with the terrible sleep pattern I've had since on Tamo). However my allergist's office told me that I should take it when I have a systemic allergic reaction to avoid needing to use an epipen and going to the ER, which is why I was wondering if any of the other allergy medications someone mentioned recently on this thread are not so contraindicated. I am feeling I'm in this annoying catch 22 right now. My PCP passed it off with "breathing trumps cancer recurrence". So, my basic question is, is it all antihistimines that are a no no or just benedryl? Thanks!
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Lacey12-I asked my oncologist and checked with pharmacist both said I was good with either. But mine is not as bad as what yours sounds to be. Definitely ask your oncologist. I would think however, if you only used it as a reaction drug rather for illness you would be fine.
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Saw the onc today for my regular 6 month visit. Inquired about his thoughts on the recent study on Tamoxifen and knew I was sunk when he giggled. He explained that absent any serious issues, he will likely recommend the 10 years.....only good news is that I should be post menopausal after finishing the med...
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odie - That sucks on the 10 years of Tamox. When I asked my MO about it, he really had nothing to say on the subject. At least we agreed to take it one year at a time. For me, I am done Jan 3, 2016. This girl is not doing 10 years. Plus, after reading the study, I'n not so sure 10 years would be of benefit for me since I am postmenopausal and the studies indicated the 10 years would only really benefit ladies who were not menopausal yet. Like a lot of other things, so confusing.
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I start my tamoxifen on Monday. Its silly that I've spent so much time preparing to take this drug, mentally screwing myself up. I'm just thankful to have something to help me stay cancer free.
How soon after taking it did any of you notice anything different?0 -
I feel great and no different than I did a year ago. I had a bit of insomnia, but can't blame it on anything other than thinking too much about FBC.
I really think there are many, many women who never get any side effects. I think they have to tell us what is possible...but that doesn't mean it will happen. It's just like all the drugs out there...all have possible SEs.
I say, be aware and be your own advocate. I asked for and received a pelvic ultrasound to monitor uterine lining thickness. I wore compression stockings on a recent flight. I am trying to stay healthy and Tamoxifen has to be part of my plan. Good luck!
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ddoragirl - I have been on Tamoxifen for over 2 years and the only thing I notice is warm flushes. Like Outdamnedspot said, there are many who do not get SEs and may who do. I say just take the plunge and go for it. You will know in time if you will have any SEs. I certainly hope you don't. Good Luck!
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Did anyone feel groggy and tired from the Tamoxifen in the beginning? I feel lousy and am not sure if it's the Tamoxifen or post-surgery fatigue. I had my Mx on Dec 21 and re-excision on Jan 2. The nurse told me it could be both, she suggested taking it at night. I think I had my 1st hot flush on it last night.
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Fatigue, yes ... only got worse for me after insomnia developed at 2 month mark. Has improved some over time. Also take another med that contributes to fatigue, so it could be a combo. Some do fine ... you just roll with it. I had dizziness, nausea, headache, hot flashes, night sweats, etc. A lot of them got better as my body got used to it. Just because you are having an SE doesn't mean it is around for ever.
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thanks bgirl, that is so reassuring!
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Jocelyne, I started experiencing fatigue about two months after starting Tamoxifen. I would make it through the day fine but was exhausted by evening. For once in my life I actually went to bed early. I was never sure if it was Tamoxifen or lingering effects of radiation. Several weeks later, I started feeling better. I've been on Tamoxifen about 5 months, and I think my energy level has returned to normal. At this point, if I'm tired, there are a number of things I can attribute it to--long day, sleep deprivation, etc.,--many of which don't have anything to do with BC. Just take care of yourself and give your body time.
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Swim girl, thanks for sharing your experience with me. It's so hard to feel this lousy for an extended period of time - I talked to my nurse navigator today and she said it takes about a year to feel "normal". I can't wait... Good to hear from you.
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jocelyne, I've been on Tamoxifen for over 2 years and I do remember in the beginning experiencing nausea and fatigue. Some of the fatigue was probably from rads. I had severe nausea with the AIs - Arimidex & Femara so ended up on Tamox. The others are correct - give your body time to adjust to the meds. I don't really have and SEs. I does get better.
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Jo-Thanks for your reassuring comment, yes poor/no appetite and lots of fatigue... this too shall pass (crossing my fingers). Also, how long after surgery Mx did it take you to transition into "normal" life? Though I'm trying to do it gradually, I'm having a rough time, everything is such an effort!
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jocelyne - I did not have an MX. I had a latissimus dorsi flap done to correct a significant lumpectomy defect. Although my tumor was the same as yours my BS took the entire bottom part of my breast. I am able to keep my nipple. Guess he wanted to make sure he had "clear margins". Anyway, I was in the hospital for 4 days as I had a complication. Once I got out, I was back to work in 10 days - yes, even with the drains. I tend to bounce back quickly from these things. Actually, sometimes I think I try to do some things too soon. I am a very active person and refuse to let these things hold me back. For me it is a mind set - to move on as quickly as I can.
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Wondering if any of you ladies have had blood clot problems while on Tamox?
I have been on Tamoxifen for several months and woke up this morning with numbness tingling of my right ring finger. Looked at it and there is a purple bruise at the base and I have not experienced any trauma. I think I may have a blood clot so took 2 80mg aspirin and am icing it. I plan to let my MO know about it tomorrow (don't think it is an emergency) but wondered if anyone else has experienced a similar situation. I know it can cause clots of legs and lung but hadn't heard anything about fingers.
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Hikergal, OMgoodness! I have actually been experiencing tingling and the occasional sensation that my fingers have fallen asleep recently and didn't even think about a blood clot....for some reason only thought about that in my lower extremeties! Will be curious to see what others say...I had blown it off as perhaps neck strain or sleeping the wrong way. Yikes!
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I get the tingly fingers too...please let us know what your MO says Hikergal.
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I have had the tingly fingers on my right hand. I found out mine is because of 3 bulging discs in my neck.
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Hi all,
First, my heart goes out to Tink. Hugs. Hugs to the rest of you ladies too!
I haven't been on the board for some time but needed to vent.
I've been on T for about 14 months. I had terrible SE's at first rashes, thrush, yeast infections, dry everything, no libido & of course endless hot flashes. I switched mfg to Mylan & split dose 10mg am/pm. Within a few weeks to a couple of months, all those SE's went away, except of course hot flashes, dryness, no libido & the joint pains set in. Now the pain & stiffness in my joints, especially fingers is almost unbearable. PCP ran bloodwork for rheumatological counts, nothing. She said she doesn't know what's wrong because Tami doesn't cause joint pain. I wanted to scream. Don't see ONC until March but I doubt she'll do anything either. Just needed to vent. Thank you ladies.0 -
Hi,
I just ran across this article
Co-enzyme Q10, riboflavin and niacin supplementation on alteration of DNA repair enzyme and DNA methylation in breast cancer patients undergoing tamoxifen therapy.
Source
Department of Medical Biochemistry, DR. A.L.M. Post-Graduate, Institute of Basic Medical Sciences, University of Madras, Taramani Campus, Chennai 600 113, Tamil Nadu, India.
Abstract
In the present study, eighty-four breast cancer patients were randomized to receive a daily supplement of 100 mg co-enzyme Q10, 10 mg riboflavin and 50 mg niacin (CoRN), one dosage per d along with 10 mg tamoxifen twice per d. A significant increase in poly(ADP-ribose) polymerase levels and disappearance of RASSF1A DNA methylation patterns were found in patients treated with supplement therapy along with tamoxifen compared to untreated breast cancer patients and tamoxifen alone-treated patients. An increase in DNA repair enzymes and disappearance of DNA methylation patterns attributes to reduction in tumour burden and may suggest good prognosis and efficacy of the treatment.
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newfmama, I've been on tamoxifen for over 2 years. My se's have been extreem fatigue and joint pain. The pain is worst in my feet. Sometimes the pain is so bad I can hardly walk and I can't help crying out--and I have passed a kidney stone without yelling. In January I took a vacation from tamoxifen for three weeks. The pain went away. After two weeks back on tami it is starting to come back. I am pretty sure tamoxifen does cause joint pain! And it will take a lot more than a Doctor's opinion to change my mind.
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