Bottle o Tamoxifen
Comments
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Ugh so much to have to think about--thank you all for sharing.
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Hi Edj3- Strangely- I started hot flashing
in the middle of rad treatment- hadnt
had that since menopause 10 years
ago- I thought it was either from
a few pound weight gain post surgery
or rad related- in any case... it kept
coming and going maybe 8 times
a day- not that bothersome but
pretty clockwork- I started tamoxifen
last week snd almost instantly
these hot flashes vanished-
I have no explanation other than its
pure coincidence or something stopped
them- It just strikes me as unusual
that I havent had even a small
hot flash since i took tamoxifin-
that confounds me
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Salamandra, I saw you wrote about Provigil. Inwas extremely fatiqued when I started Tamoxifen, but at the time I thought it was a combination of finishing up radiation and starting Tamoxifen. The fatigue did not stop so I finally said something to my oncologist. She sent me to the psych/oncology md and she put me on Provigil. It made a big difference. I ended up having neurological testing and she switched me over to Concerta which I take Monday through Friday. I was very resistant to taking medication but i am glad I changed my mind. Now i am even trying accupuncture for hot flashes! Good luck
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Thanks so much for that feedback Lewhy!
I already take short acting Ritalin for ADHD, and that did not help with the fatigue. But I will be assertive to try for the provigil when I go back on. My psych wanted to try me on long-acting ritalin for ADHD but my pharmacy had trouble getting it, so didn't get to try that yet.
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DizzyBee - does your MO know about the fact you shared re: Codiene/pain killer drugs not metabolizing for you? If not, I would tell them. That would worry me. Yes, there isn't conclusive evidence in the medical community about the effectiveness/benefit of offering the CYP2D6 enzyme pathway test as of yet, BUT IMO I had been told that I am a KNOWN NON-METABOLIZER of a drug that uses it, well I would ask for that dang test at the very least. We already are rolling the dice whether Tamoxifen works for us, that's despite any info on the pathway. I'd hate for you to suffer any SEs of Tamoxifen and not even have the chance of having any benefit at all because your body doesn't even turn it into the medicine our bodies convert it to in order to block the estrogen. Keep us posted.
Rah2464 - Sounds like you have a very proactive MO. Awesome. Can I ask, how did you get the testing approved or did your MO suggest it or did you bring it up to them? My MO wouldn't do more than listen to me about the test and then say because there's no studies or guidelines on it, it's a test in her opinion that doesn't offer any benefits. That's about the only place that her and I have disagreed on so far.
Lewhy & Salamandra - Thanks for sharing the info about Provigil and Concerta. It's always good to have more tools in the toolbox to fight fatigue if needed. So glad to hear they are working for you both on that SE front! Hope it stays that way!
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how do you get tested to find out if you're a poor metabolizer?
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Here are some helpful links and info on CYP2D6 as in regards to Tamoxifen. HOpefully this is helpful to someone.
Rosabella - To my knowledge, any doctor can order this testing. There are many labs that offer it on their websites, like LabCorp and GeneleX.
Introduction to CYP2D6 and CYP2D6 testing
"Pharmacogenetic testing and the use of testing in clinical practice is a relatively new, evolving and complex topic. This short summary provides an introduction to the basic concepts that need to be considered in relation to cytochrome P450 2D6 (CYP2D6) and CYP2D6 testing.
Enzymes, genes and pharmacogenetics
Differences in the response of individuals to the same drug at the same dose may occur as a result of interindividual differences in enzymes (e.g. CYP2D6) responsible for metabolising the drug. These differences may be inherited and occur as a result of differences in the genes (e.g. CYP2D6) that encode the enzyme."
Study Suggests Earlier Research on CYP2D6 Is Flawed (From BCO.org)
"A new study by researchers at the Mayo Clinic suggests that the large studies on CYP2D6 may be flawed because the studies did the genetic testing on samples of tissue from the breast cancer rather than on healthy tissue.
The study is published in The Journal of the National Cancer Institute, vol. 107, issue 2. Read the abstract of "Loss of Heterozygosity at the CYP2D6 Locus in Breast Cancer: Implications for Germline Pharmacogenetic Studies.""
"Still, when the researchers compared CYP2D6 genotypes that came from breast cancer tissue to CYP2D6 genotypes that came from healthy tissue, they found that about 20% of the genotypes were misclassified.
"The potential benefit of CYP2D6 testing is obvious, but has been difficult to establish," said Matthew Goetz, M.D., a Mayo Clinic oncologist and senior author of the study. "We found that if you use tumor tissue to determine the CYP2D6 genotype a patient was born with, you are going to get it wrong a substantial portion of the time.""
"Editor's Note: In 2018, the Clinical Pharmacogenetics Implementation Consortium, an international group of scientists that issues guidelines on the effects of genetic factors on reactions to drugs, issued a guideline on using CYP2D6 genotype information to make decisions about prescribing tamoxifen after surgery to treat hormone-receptor-positive breast cancer. The guideline strongly recommends that people with an abnormal CYP2D6 genotype that makes them less able to metabolize tamoxifen be treated with a different type of hormonal therapy, such as an aromatase inhibitor."
"Currently, in both premenopausal and postmenopausal patients with invasive breast cancer involving estrogen receptor–positive tumors, long-term therapy with tamoxifen is the standard treatment.16 This treatment reduces the recurrence risk by ~50%.17 The clinical outcome of interest is recurrence of cancer, but an intermediate end point could be endoxifen levels. Several studies have shown that circulating levels of endoxifen are lower in the presence of fewer functional CYP2D6alleles.4,18 If lower endoxifen levels are associated with reduced effectiveness of tamoxifen therapy, CYP2D6 genotyping may provide useful information in personalizing cancer treatments. It has been suggested that patients with no functional CYP2D6 alleles should be offered alternatives to tamoxifen.19"
Tamoxifen Therapy and CYP2D6 Genotype
"At this time, the FDA-approved drug label for tamoxifen does not discuss genetic testing for CYP2D6 (Table 1) (1). The National Comprehensive Cancer Network (NCCN) Breast Cancer Panel does not recommend CYP2D6 testing as a tool to determine the optimal adjuvant endocrine strategy (Table 2), and this recommendation is consistent with the 2010 update of the American Society of Clinical Oncology (ASCO) Guidelines (the most recent update, 2014, does not discuss pharmacogenetic testing) (2, 3).The Clinical Pharmacogenetics Implementation Consortium (CPIC) recently published updated guidelines for the dosing of tamoxifen based on CYP2D6 phenotype, with therapeutic recommendations for each metabolizer phenotype (Table 3). For CYP2D6 poor metabolizers, CPIC recommends using an alternative hormonal therapy, such as an aromatase inhibitor for postmenopausal women; or an aromatase inhibitor along with ovarian function suppression in premenopausal women. This recommendation is based on these approaches being superior to tamoxifen regardless of CYP2D6 genotype, and the knowledge that CYP2D6 poor metabolizers who switched from tamoxifen to anastrozole do not have an increased risk of recurrence. The CPIC recommendation also states that higher dose tamoxifen (40 mg/day) can be considered if there are contraindications to aromatase inhibitor therapy; however, the increased endoxifen concentration among CYP2D6 poor metabolizers treated with a higher tamoxifen dose does not typically reach the level as in normal metabolizers (4).
Recommendations from the Dutch Pharmacogenetics Working Group (DWPG) of the Royal Dutch Association for the Advancement of Pharmacy (KNMP) also discuss using an alternative drug to tamoxifen in CYP2D6 poor metabolizers (Table 4) (5)."
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Hello there!
I am 48 yeas old and supposed to be post menopausal based on lab test. I have no physical signs of menopause so my MO I started me with Tamoxifen 3 months ago then will transition to AI. I have no hot flashes but this med seems to gives me anxiety and paranoia.
I always have a hard time loosing weight before dx. I lost 18 pounds during diagnostis(before chemo,) and I gained 6 pounds after chemo. After treatment I am watching what I eat but not really on a diet. I am losing weight, anybody here lost weight while on Tamoxifen?
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I lost weight initially, but I think it was left over stress. Now I'm getting thicker and thicker. Hate it.
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I forgot who posted about the ginger, a friend of mine that doesn't have BC but is getting into menopause and can't take hormones because of a blood clotting issue was having terrible hot flashes. I told her about the ginger and she started taking it and says it started helping right away.
As for me, mine haven't been bad but I am getting a few more. Not sure if I'm just settling into Tamoxifen or if it might just be because it finally got warm out.
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Hi anxious 789, I have been doing weight watchers and am averaging a one pound per week weight loss on Tamoxifen. It will be 20 weeks, Wednesday, and I am hoping to hit 20 pounds gone! My MO was surprised to hear I am losing on Tamoxifen and I was not really sure how to take that, but anyway, I am losing! Maybe give WW a try?
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Hi anxious 789, I have been doing weight watchers and am averaging a one pound per week weight loss on Tamoxifen. It will be 20 weeks, Wednesday, and I am hoping to hit 20 pounds gone! My MO was surprised to hear I am losing on Tamoxifen and I was not really sure how to take that, but anyway, I am losing! Maybe give WW a try?
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If anyone can shed light on this I am all ears.
It is known that a small percentage of women do not metabolize tamoxifen. That it does them very little good. They would be more protected taking a different medication for hormone positive breat cancer.
In some of the reading I've done, and I admit a lot of those wordy, technical studies fly right over my head, I found more than one mention that in women who are poor metabolizers, 40mg a day may help the situation, instead of the regular 20mg a day.
Here's what I don't understand. If you are a poor metabolizer at 20 mg, where is the mechanism by which MORE of it will be metabolized? Like, if you do not understand German and you are confused listening to one German speaker, by having three of them talk at you at the same time you will suddenly start understanding German? I do not understand how MORE of something that you don't metabolize will suddenly FORCE you to metabolize?
I am not saying that this is not happening and not possible. I just want to understand the HOW, and so far I do not get it.
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runor re the thickening, metoo, it took a really concerted effort to lose the weight. I'm down 17 lbs since committing to be kinder and more attentive to me last Nov. it has not been easy but doable. I am 4 years post diagnosis and tx and its been a real journey.
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Runor and Lewhy, thank you for the reply. I am just being paranoid on losing weight with less effort.
I read that one of the side effect of Tamoxifen is swelling - does anybody here have swelling around the eye and eyebrow? My Opthalmologist think there is nothing to worry about but these doctors seems to down play everything. Any input will be much appreciated
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Runor - I totally agree. I'd like to know why that's the reasoning too. Drives me abs-so-freakin-lutely nutso. And furthermore, if these studies are talking about poor metabolizers and needing to changing doses or switch to an alternate medication to compensate, than why oh why are we not all tested? Like I know, I get it that's there not "enough" info of the cost effectiveness/increase in survival aspect as of yet in the research, but if the pharmacologists are in agreement that these changes SHOULD be made based on how a person metabolizes Tamoxifen, then logic says the tests should be done. Oh well, in a perfect world right??
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Anxious789. Swelling. Get coffee or wine. Long boring post coming.
I had one lousy lymph node removed and ended up with lymphedema all over the place. My breast, armpit, shoulder blade, ribs, side and arm swelled. Still do. Some bras make the swelling worse. Some days it's better, other days worse. But when it was really bad, back nearer the surgeries, I swear my throat and one side of my face swelled too. It was subtle. I looked more double chinny than normal. And I felt it. It didn't feel like fat, it felt like something that had shown up and was not normally there.
Surgeries and radiation are a shock to the system, lymph system especially if surgery has been done to dig out a few nodes. I think the effects of this are grossly downplayed.
I looked up videos on lymph drainage massage and came across a lady doing facial lymph drainage massage and I thought, well here's a cuckoo bird making some crazy, half baked Youtube tutorial. She was rubbing the lymph nodes in her collar bone to get them activated. Then the nodes in front of and behind the ears. Then the eyes both under and in the eyebrow region. She massaged her neck, all of this supposedly to get that pooling lymph fluid to flow back into the lymph system and not puff up tissues where it was collecting.
I am the world's biggest skeptic. This looked like pure horse manure to me. But there I was with puffy eyes and jowls and feeling really odd so I gave it a try. What harm could it do?
Has this restored my face to the tight, jowl free 20 year old I used to be? Not a chance. But it DID make a difference in how I FEEL. And a smidge of a difference in how I look.
All of this to say that it might not be the tamoxifen that is puffing up your face but the effects of other surgeries, or even allergies, that might be doing it. You should consider giving this a try. THe results are not dramatic and not instant. But I can feel when I need to 'do the massage' and I swear I feel better and look a wee bit improved after. If I can find that video I will link it . Think about it, NOT tamoxifen, but other surgeries (although you have no surgeries listed in your bio so I am only guessing).
https://www.youtube.com/watch?v=7H9YrjCv8BI
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Thank you very much Runor, I will try to do this every day, and hopefully it works.
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Hello Pals, I have been taking tamoxifen from past 6 months now. i have suffered mild version of the most common side effects such as pain in bones and hair thinning (which is more than mild, i believe) but the major concern is about the throat. ever since i started with tamox i have developed this hoarse voice and my throat feels painful while swallowing (occasionally and not always). i was ignoring it initially believing it to b a seasonal sore throat like condition which would settle down on its own, but boy, it doesn't seem like going away any time soon and i am just wondering what to do with this. any suggestions would be much much appreciated.
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Hello Pals, I have been taking tamoxifen from past 6 months now. i have suffered mild version of the most common side effects such as pain in bones and hair thinning (which is more than mild, i believe) but the major concern is about the throat. ever since i started with tamox i have developed this hoarse voice and my throat feels painful while swallowing (occasionally and not always). i was ignoring it initially believing it to b a seasonal sore throat like condition which would settle down on its own, but boy, it doesn't seem like going away any time soon and i am just wondering what to do with this. any suggestions would be much much appreciated.
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Hi godisone,
I’ve got the same problem and I’m taking a large dose of stomach medicine and still have hoarseness, clearing my throat a lot, and a sore throat, not a regular sore throat. I’d let your doctor know. I’m taking the Tamoxifen with food and not laying down after, and trying not to lay down on a full stomach. I’m worried about permanent throat damage
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Godisone one other item to consider is could it be affects of radiation if you had radiation? I know that my doctors have said that is the gift that keeps on giving. Maybe it impacted you stomach or throat. Hopefully you can figure out what is going on.
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After three years on Arimidex and tons of SEs...I started Tamox May 12 with just 1/2 a 10g pill every other day and have been viglant about SEs. I did two week of 5mg every other day before 4 weeks of 5mg every day. Started to see some SEs with 5mg every day so stayed at that level until SEs had diminished. I am on my second week of 5, 5, 10, 5, 5, 10 and the SEs are big. Vag discharge, bone pain, I sprained my ankle yesterday as I was avoiding weight on my right leg due to bone pain.
I fell pathetic on this, but plan to reduce back to 5mg every day and hope the SEs go back down.
I am DCIS and the most recent studies came out that 5mg might be sufficient...well, I think the some T is better than no T is going to have to be the way as I can't take 10g even just twice a week.
I see the MO next week and he is expecting that I have been on 10g for nearly three months...I'm sure he won't be thrilled that I am still in the 5/10 mode and looking to go back to simply 5.
With regard to metabolizing the drug...I am not a scientist, but the fact that I see SEs at these low levels means to me that by body IS metabolizing this drug and reacting to it. So maybe 5mg IS sufficient...??? TT
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I’ve been on Tamoxifen for 9 years with really no side effects. I had a Stage 2 breast cancer and was given Arimidex after radiation. Sadly after 3 years I developed a tumor in my other breast. After chemo and radiation, I was put on tamoxifen, had no noticeable side effects and even more important, no return of cancer.
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Hi Pequod, and welcome to Breastcancer.org!
Thank you for sharing your good experience with tamoxifen, though we are sorry to hear of your second diagnosis. You're sure to find others here who can share in your circumstances.
Thanks again for posting, and we look forward to hearing more from you soon!
--The Mods
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Hey Pequod- impressive ! You give
me hope! Do you mind telling
me your age? I am 63
and in tamoxifin and fear the
post menopausal side effects-
the likelihood is high that I will
stop ( been on one week )0 -
I forgot 1 se, probably cause it doesn't bother me. Dark brown discharge for a couple days then goes away for several days. I just wear pads.
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I feel like I am losing my mind! The hot flashes are so severe—I feel like I am walking around with a fever. But not just in my head—all over. Had a complete breakdown this evening.
I am young. Late 30’s. Three years ago I decided Lupron was not for me—I opted for the full hysterectomy/oophorectomy. I had done a dose of Lupron with a round of tamox before surgery but after that I started on AI’s. Tried the two A ones—my Onc wasn’t a fan of Femara for my case. One AI caused horrific, unbearable joint pain and the other was okay until I had gone a week without sleep and really was losing my mind. I had been trying sleeping solutions with my PCP to no avail. So when my yearly review came up with my Onc he switched me to Tamoxifen.
Now I am back to not sleeping AND feeling like I am on fire.
I need encouragement. Or someone to commiserate. Or someone to say they only got through three years of hormonal treatment and called it quits and they are okay. I cannot fathom two more years of this—let alone 5 more beyond that.
I am taking a couple of days off and after reading a bunch on here, I am going to start back at 10mg. I dived right in June 1 at 20mg. Goodness, I hope this gives me some relief.
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Spoonie, Rosabella and Runor - sorry I was away visiting my Aunt who is 90 and has never had any health issues. Lucky lady!
In answer to your questions, my MO was receptive to the genetic testing for CYP2D6 pathway, but with the OneOme testing protocol. We had discussed testing back when I first started Tamoxifen, but the testing costs were very expensive and she said insurance had not covered it for any of her patients. When I brought it up again this year with a self pay service, she said she had recently begun using OneOme. She wanted that because it was directed by her, and results were fed to her first. She thought the testing would cost about $200 out of pocket but my insurance covered it entirely.
Runor I agree with you about the mechanism. I suspect the metabolizing has to occur within a specific time frame before your body flushes any residual medicine out? Therefore if you don't have normal gene alleles, you can't process as much within the time window. So more medicine dumped in would equal more medicine metabolized. So now I am thinking why would you increase the dose, why wouldn't you just take it twice a day and process 12 hours apart? I will send a question to my MO and maybe we can get an answer on that. I seem to recall from reading some of the data on the original trials that patients took their Tamox twice a day. Makes me wonder.
What stinks is that with my particular metabolizer status, I can't take most acid reflux meds because they use the same pathway. There was one that was listed as no interaction so I will have to chase that one down.
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Musogirl you have been through it. Yeah the hot flashes can be a beast. I will tell you that acupuncture has helped me tremendously. I don't know why it does, don't care as long as it gives relief. I get it every 2-3 weeks and I can definitely feel when it is time to go see her. My flashes wax and wane in intensity, since I am trying to be menopausal at this point. Starting from a hormone level as you probably had I would think makes the transition much more difficult because your body is feeling the withdrawal of accessibility to any estrogen.
What manufacturer do you have? Some folks do better with different providers. For 10 months I was on Watson/Activis. Month 11 and 12 I have received Teva/Mayne. My hot flash intensity increased on the Teva brand along with leg cramps, but my fatigue lessened considerably. So a tradeoff . I hope the 10 mg works for you.
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