Bottle o Tamoxifen
Comments
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Aspirin,
Hey have you all been following the latest about aspirin and breast cancer (there is a separate thread for it). Would appear that a full dose aspirin, 3-4 times a week SIGNIFICANTLY keeps recurrence at bay! Low dose aspirin (like I take, and I know Jeanette does as well) doesn't seem to have the same effect.
Not to carry on the conversation on THIS thread - just to bring it to you attention.
Wild ocean waves, windy and cold here - north of Vancouver in BC, Canada - BUT the blossoms are still blooming
. I get my exercise climbing a 400' sloping driveway to our garage, where my washer and drier are - and I have mega washing today!Look after yourselves!
BTW where is Gina - and where are her drains?
xo
C
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Quick Hello to all.
I sometimes wonder about my oncs ideas - I take tamox and lyrica for pain and absolutely nothing else - no supplements, no vitamins and no restrictions on what I eat except for no alcohol and that's connected to the lyrica not the tamox and no CYP test or even talk about metabolizing!!
Well I guess I'll have a long list of quetions for him when I go back in May!!
Sweet Dreams all!!
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A gyne question to my seasoned friends-
I have my first post surgery/radiation/start of T gyne exam next month. Can you tell me what I should expect? What should I be asking? Any advice would be MOST welcome!
C
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C,
Now I'm understand more as to why you avoid phytoestrogens and foods that further inhibit T I know we've talked about this lots but is there a list of food T inhihitors in addition to grapefruit and pomegranite are inhibitors ?
As for your gyno appointment, you might think about having a transvaginal ultrasound and external u.s. before you meet with your gyno. This way he can have the results before you meet with him. It gives a more comprehensive picture as to what's going on than a simple visual exam alone.
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MTG
sent you a PM re phytoestrogens.
Thanks for the US suggestions. They will have to come AFTER my consultation, however, as I am only home one business day ahead of my appointment. Good to know what I should have, though
C
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Caroline - I think I remember reading that Gina had an appt. on March 8th. I hope everything turned out ok for her.
MTG - My onc never even mentioned that CYP test. So I know I've never had it. Guess I'll have something else to ask her on my next visit.
Susie - How are your "ladybug" issues? We have those little orange buggers here in the fall. They are everywhere!
Hugs ~
Nancy
Ainm - guess I missed your post. No CYP for you either? I get scared sometimes. I read where others seem to do so much ... so many tests that I've never had. Tumor markers; that's another thing I've never had done. Asked about it last visit (March 3) and was told they are far too unreliable. I just don't know what to think sometimes ... SIGH!
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Hi Everyone,
I'll do one of your drive bys Susie because I haven't been able to be on for a few days and I'm lost. Our forum is the largest one I think. But that's a good thing.
Many of you might recall how I tell you my se's come and go. My "dry eyes" never did completely "go" but had settled way down. Now it's back with a force and I'm using the artificial tears many times a day. But it is helping a lot. When it acts up bad you actually feel pain in your eyes like when you get up after sleeping all night, and then it will blur your vision at times too. Not a pleasant se that's for sure.
One of our members had this problem way back and did comment on here but now I can't recall who it was, but if you're still aboard shout out how you're doing with it.
Hope everyone is having the good weather that we are finally having here. It's 47 and is supposed to go up to 60 today.
Bonnie
I could REALLY wear them today. 
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When i started Tamox, I took it tin the morning. It made me dizzy & I was getting nite sweats. I switched to taking it around dinner time. The dizziness is better, but the nite sweats haven't change.
don23: I was on Tamox for 7 months, went to gyno, did US & she found a polyp & she said my uterine lining was very thick. I had a D&C & biopsy on the polyp. It was a same day surgical procedure. Everything was B9. The thickening of the uterus w/ Tamox is common. And most likely the polyp was there before I started Tamox. But I didn't have any symptons. She said that now I'm on Tamox, most likely another polyp/fibroid won't come back because estrogen is being blocked. Recovery of D&C was quick. Just some lite spotting for about a week. GOOD LUCK!
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Hi all:
I know I'm new to this site but I want to share some information I received yesterday when I visited a naturopath. He specializes in treating people with cancer. I went to him to ask for help with the s/e's from T - particularly the hot flashes and depression. I had read an article on acupuncture and its effectiveness in dealing with hot flashes. So here's what he gave me: an abstract from an article written on a study of acupunture vs. effexor. It compared 2 groups - one using acupuncture, one using effexor. Both groups exhibited significant decreases in hot flahses, depressive symptoms and other quality-of-life symptoms, including significant improvements in MH. Acupunture was as effective as effexor. But the kicker is this: The acupunture was "quicker" in relieving the hot flashes but also had the additional benefit of increased sex drive in some women, and most reported an imporvement in their energy, clarity of thought and sense of well-being. The other benefit is that there aren't any side effects as with effexor - nausea, dry mouth, headahce, difficulty sleeping and dizziness. The naturopath did say that T. is a very effective drug in reducing recurrence. I had my first acupuncture tx. and he also suggested indole-3-carbinol and melatonin. Melatonin with T. in a study showed an increase in effectiveness (lowered recurrence rates slightly more than T alone). Indole-3-carbinol and melatonin will also help with the depression from the T. Here's hoping for some relief.
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'I have my first post surgery/radiation/start of T gyne exam next month. Can you tell me what I should expect? What should I be asking? Any advice would be MOST welcome!'Hey, Caroline! I just had my 1st post surgery & rads gyn exam last week. My new doctor has a special interest in women who have had BC. I feel lucky to have her.
She feels that a yearly transvaginal ultrasound should be done on women who take Tamox, just to watch out for problems. My onc (actually her nurse) didn't take my pelvic pain from Tamox very seriously but my gyn did. I had to reschedule, but I'm having the ultrasound next week.Other than that, it was a fairly routine exam.
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Thanks favourite T friends for all the gyne advice - I will note it and be ready for next month!
C
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nwood - I also haven't had any of the test, CYP or transvaginal ultrasound. When I asked about the CYP they said they didn't really recommend it. I see a new gyn next month so will see what they have to say.
I tried Effexor for the hot flashes and really didn't notice any difference and the effexor made me nauseous. I may ask about acupuncture some day and see if my insurance will cover.
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Peg, Nancy and everyone else - I've been taking T for 4 months now and having hot flashes at night, so I was convinced all was well. I just had the CYP2D6 test because it was easy (at my doctors office), fast (a simple blood draw), free and would give me some specific info. NEVER, NEVER, NEVER did I suspect that the test would come back showing that I was a Poor Metabolizer -translation: I'm getting little to no benefit from Tamoxifen, at least via the CYP2D6 enzyme. I'm not even certain that I'm going to wait and see if the 30mg improves things. Still checking pros and cons of that one.
Bottom line for everyone - get checked. Side effects weren't an indicator for me. If I had gone along blindly expecting 20mg of T to work, who knows ? I'm not happy with the results but I sure am glad I got the test
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MTG - Wow. Thanks for the info. I've been on T for over 6 mos now. I never knew there was a test to see if you metabolize. Boy... the info you learn here is sometimes better than a doctor visit! I go back to Boston in July ... too late to wait? What do you think? I wonder if my primary care (who is local) could order this test? hmmmm ... Just when you think it's safe to go back into the water ... BOOO!
Thanks again ... ♥ (Susie ... I found your "heart"! lol!)
Nancy0 -
A prescription is not necessarily needed - not certain if that's only true for labs using cheek swabs or for those using blood samples as well. There are several places that offer testing, From what I've read, Genelex simply sends you a package in the mail, you swab your own cheek and send it back to them. Personally, I think I have more confidence in a blood sample but I have not basis for that preference. One of the ladies posted this on another thread:
testing for CYP2D6 is available through:
Mayo: http://www.mayomedicallaboratories.com/test-catalog/2010/Overview/83180
blood sample only
Arup: http://www.aruplab.com/guides/ug/tests/0051232.jsp
blood sample only
Quest: http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=10490.html&labCode=SEA
blood sample only
Genelex - http://www.tamoxitest.com/
blood sample or cheek swab, includes software that scans for drug-drug interactions that can reduce tamoxifen effectivenessthe quest link doesn't help much but I've left it since Quest is all over the place and a call or further research should fill in the blanks.
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Good morning, tamoxibeauties!
Here's a 'stump the band' question for you- When I saw my gynecologist she said as far as she could tell everything felt normal. Then she said it was a little more difficult to tell in my case because my uterus is 'midline'. I nodded like an idiot for some reason but I had no idea what she meant. Does anybody out there have a clue?
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hello everyone,
sparrow, unfotunately, i don't know. can you call the office back and ask?
i'm so glad i found this thread. i started one a few days ago asking how long it takes to feel "normal" again after treatment because i was in so much pain with leg cramps every day and bone pain (sometimes) at night--that would wake me up. it was like taxol all over again...i thought it was just the after effects of chemo. i stopped chemo 9/16/09 and finished rads 12/17.
and i come to find that Tamoxifen causes this and now reading the posts here, it doesn't just stop at leg cramps and bone pain!! lovely.
i called the Onc and i'll see him monday to change to something else.
has anyone else switched from Tamoxifen? if so, what did you switch to? did you like it better?
i'm also removing my last remaining ovary on the 30th so would i have to take "something" that stops my estrogen? i'm 40.
any information that anyone can offer would be a huge help!!
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Hello ladies, I have a question for you. I will start Tamoxifen after my rads are done next month. I still have not gotten my periods back yet. Does this mean that I am producing NO estrogen or am I still producing some estrogen? ask because I am planning to get Eligard injections as well. But If I am not producing estrogen then that means no shots which means more money in my pocket..Does anyone else here get injections as well?
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Nancy,
I used the Seattle Genelex lab - cheek swab (I am from Canada). All the research I could find indicated it was as reliable as a blood sample. They were quick and very professional. Also, after the fact, you have access to a site where you can plug in medications/over the counters/foods to see how they react with tamoxifen. I made all the arrangements myself (no prescription is needed). The cost for anyone in the States would be about $300. and it may be insurance retrievable.
For me, I wanted to know if I metabolized T BEFORE I began it. As it turns out, I am only a partial (intermediate) metabolizer, so my doc (who was TOTALLY unsupportive to testing) upped my dosage from 20mg to 30mg right from the get go. So far, minimal side effects - annoying but not insurmountable.
Cheers,
C
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Hey girls!
I just heard from Gina ... She asked me to post for her, She was hospitalized on March 5th with a bad infection. She had surgery on Tuesday ... they had to remove the expander and could not replace it due to the infection. To top it all off, she now has another drain. She has been through the wringerr and is pretty down. I figured we could all send her our love and support.
Nancy
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Nancy - Please tell Gina we're sending her positive energy. I know sometimes it seems like one step forward, two steps back and it gets frustrating.
Now, for those of us who have doctors saying that hotflashes means T is working, I've attach a link and summary of an abstract . The PM women in this study actually had more hot flashes than the others. The conclusion: caution should be exercised when interpreting pts' endocrine symptoms as proxy for CYP2D6 activity
By the way, did you guys know that approoximately 7% of women (studies differ from saying 5% -9%) are Poor Metabolizers, that's 7 out of 100 women taking Tamoxifen. Never occurred to me that so many would be blindly getting no benefit.
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=70&abstractID=40352
The relationship between CYP2D6 genotype and endocrine symptoms in women taking tamoxifen
Author(s):
W. J. Irvin Jr., J. M. Peppercorn, E. C. Dees, L. Lange, W. K. Chiu, J. P. Evans, K. E. Weck, O. Olajide, H. L. McLeod, L. A. Carey; University of North Carolina, Chapel Hill, NC; Duke University, Durham, NC; Rex Hematology/Oncology Associates, Raleigh, NC
Abstract:
Background: Patients (pts) with dysfunctional CYP2D6 activity taking tamoxifen (T) may have lower endoxifen (E) levels and worse outcomes. Controversy exists whether hot flashes (HF) are relevant as a clinical surrogate for CYP2D6 activity. We sought to analyze differences in endocrine symptom severity between CYP2D6 genotypes and between dosing levels of T. Methods: In LCCC 0801, 118 pts on T ≥ 4 months participated in a prospective Ph 2 study in which all underwent CYP2D6 genotyping (CYP450 Amplichip) and evaluation of baseline E levels. Pts with any dysfunctional CYP2D6 alleles increased T to 40mg/day and E levels were repeated 4 months later. The primary endpoint is the change in E levels with CYP2D6-guided T dosing (not yet reported); secondary endpoints included analyses regarding endocrine symptoms. Pts were given the Breast Cancer Prevention Trial Menopausal Symptom Scale and the Functional Assessment of Cancer Therapy Endocrine Subscale at time of study consent and at their 4 month follow-up. Both scales are 0-4 ("not at all" to "extremely"). Pts were given a score (Rae et al., 2009) based on allele activity from 0 (none) to 2 (high): 0=poor metabolizing (PM); 0.5-1 = intermediate metabolizing (IM); 1.5-2 = extensive metabolizing (EM). Results: 117 completed responses with no evidence of a time dependent change in HF reporting. Differences in endocrine symptoms were not statistically significant between EM, IM, PM (20mg T) or between 20 vs. 40mg T. In multivariate analysis, the only significant differences in measured symptoms were in combining EM/IM vs. PM for easily distracted (EM/IM mean response value 1.10 vs. PM 0.55, p=0.043) and for bladder control difficulty (0.63 vs. 0.09, p=0.028). Conclusions: In this small study we did not see a consistent HF score related to genotype. However, we recognize the limited power of this study. Currently, larger studies are being performed to better answer this question. However, caution should be exercised when interpreting pts' endocrine symptoms as proxy for CYP2D6 activity .
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The enzyme test/issue is still a bit controversial and the data so far not always conclusive. I love the idea of solid indicators of effectiveness like flashes or metabolism test results. But research studies as well as various posts in this very helpful mega thread seem to suggest this stuff isn't straightforward. The mysterious pros and cons of ole Tamox seem to keep coming many years after its introduction. The estrogen side of breast cancer could be a great, low toxicity path to manage breast cancer. Considering endocrine therapy can take months to show effectiveness on scans, it would be really helpful if there was a serum test that could determine what's going on sooner. Intelligently being able to switch between suppressing and boosting estrogen levels depending on tumor status could make this a lot easier.
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Hey, Been In Hospital since march 5th (1 week) . I woke up so sick last Friday on My Sarah sweet 16 th Birthday, I really didn't want to go to the Doctor,( cause of Sarah b-day) but I knew something was wrong. They put me in Hospital Rt breast infection & started me on Strong Iv antibiotics WBC (white blood count) was 4 times higher than normal, After 2 days Iv blew all veins in left( I can't have any stick rt arm because of mastectomy) They put a Picc line in & cont. antibotices, My WBC count came down slowly. Tues They took back to surgery. The infection was so bad that they could not replace The tissue expander & surgeon could only clean out all infection & close me back up. I am so depreseed. The breast looks awful & Cocaved & deformed & That why I wanted reconstruction so it would look normal. I can even look at it with out crying. Now I have another drain from this surgery! Lots of pain! Please pray I can get thur this because I am not sure I have any strength left in me! Have a good weekend! Love Gina
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Micheleboots - I just wanted to reply to your post. I assume you had chemo. Most likely you still have "chemopause". Chemo induced menapause. I got my period during my first 2 chemo treatments, then my periods stopped. I finished my chemo in June 2008 and then my periods came back in October 2008 so I did not have a period for 4 months. In February 2009 I did Lupron shots for 2 months for ovary surpression (since I was considering having an oopherectomy). I did the shot in February and March and then stopped them because the Hot Flashes were crazy!! I got my periods back in June 2009 and had one in July, August and September, but now I have not had one in 6 months. I have been on Tamoxifen since July 2008. Since it has been 6 months, I assume I am now in menapause. Your period might come back. I think clinically you are not considered to be in menapause until you have not had your period for 1 year. Also, I think even if you are menapausal, as long as you still have your ovaries, you are still producing some estrogen, just not as much as before menapause.
Hope that helps. If you have any questions, you can PM me. (Just an FYI - I was not even close to being menapausal before my BC diagnosis (I was 40 then, I am 42 yrs. old now). I got my periods every month and was very regular until I started chemo. Now my body has a mind of it's own and I am just along for the ride!)
Take care.
Karen
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Hi All,
I am so busy at the mo' and was just going to do a quick look over. I'm headed out of town today. However, I saw Gina's news.
GINA ~ I am so sorry that you had to go through all that!!!! I will definitely pray for you and we are here to support you through this! I am sending you lots of ((((((((hugs)))))))) and love!
Kelly
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Oh, Gina, I'm so sorry!!! Sending lots of love and prayers! Keep us updated! XOXO- Tamara
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Gina
So sorry!! You are in my prayers.
Harley
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Gina, I can feel for you sista!! Since my bilateral mast w/ reconstruction, I have had seven surgerys. I have two breast that do not align up and have been through the staff infection and having the one taken out to heal the infection, then put back in and then others to try to make them look even. Oh my god~ My daughter and daughter-in-law started looking at me like I was crazy or addicted to surgery. I could not tell them how it feels, although I tried. I can not tell anyone who has not been through this, just how it feels. It has been three years now and I have not had the cancer come back. I took the tamoxifen for two years and have been on arimidex for almost a year.I gained twenty pounds. I deal with body aches from hell and take ibuprofen 800 almost daily. I have not slept for three years without taking benydryl or ambien. I can't remember what I did last week.Have been on an emotional rollercoaster without any real reasons. My feet swell and go numb, nueropaty. AND with all that being said, I will continue on this drug until my oncologist tells me I am done. I want to live more than I want anything else. I don't want it to come back. This whole deal has made me stronger and more spiritual. I do not whine to my family because they don't really give a damn; to them I am "all better". Besides, I am not a whiner even if I do get on here and whine occassionally. I do so because sometimes we have to air it out and we can understand each other here. We are not whimps~~~ we are strong surviviors, paying the price to survive!!
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Oh Gina,
You are fighting one hell of a battle. This whole cancer ordeal SUCKS! Your story breaks my heart. I am praying with all I've got for you to bounce back from this quickly. I wish I had something profound to say ... there really are no words are there? We get knocked down and then get back up again and fight the good fight.
I'm fighting with you and for you!
Love,
Nancy xoxo
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Oh Gina - you really have been through the wringer!!
Sending you lots of virtual hugs of the gentlist kind.
Thinking of you
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