Bottle o Tamoxifen
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Hi All
New Tamoxifen user here. I started to take it this week.
I had a DMX with T/E on 9/20 - no chemo.
I've been very tired this week and I'm guessing it's because I started back to work but am wondering if the T is making me tired also or too early for S/E?
Any info on this drug will be helpful.
Oncologist says hot flashes most common S/E.
jan
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Hi Jan, One of my early SEs was fatigue, that hit in several day spurts, so I at least would opine that the tamox could be responsible. But since you just started back to work, and are still recovering from major surgery, it's quite probable those are contributing too so its perhaps impossible to pin it on tamox. For info on the drug, there are pretty good info pages on BCO itself - just click through to the treatment options pages and you'll find tamoxifen there somewhere. And keep posting questions here, and someone's sure to have some input for you. Best to you! CS
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Thanks CS
I'll check out the info.
Jan508
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Just got my labs on the Tamox gene/metabolizing test. Not good. Positive for the CYP2D6*4 gene, null variant. I'm reading that this means that not only should I consider alternative therapies, but also that I have a higher risk of relapse. Guess that's a given if Tamox isn't well metabolized by my body. Does anyone know how reliable these tests are? Do the major cancer centers use these tests?
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Jan, I have also recently started tamox and had the s/e of fatigue for about two weeks. But I also had to go off of prozac and start effexir which has possible s/e of fatigue. The past two days I have actually had trouble staying asleep. I am guessing that in your case it would definately be work related and possibly also tamox related.
And Melanie, I have no feedback on your subject but am sorry you got this news. Let me know what you find out about this. I believe that the blood test my onc ordered prior to my first follow up visit is for the same thing. Before seeing your post, I was under the impression they were just checking my blood for adverse affects to my body. I often fail to ask questions. Frankly, there are times I just don't want more info. I wish both of you as well of my other friends all the best.
Peace and Love...
~dorothy
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Melanie - I don't know much about that test except for what I read on this site. I have read that some Onc's do not even do that test because they do not think it is reliable (which does not make sense to me). Did your Onc give you the results and say anything about them?
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My onc is out of town (why are they always out of town when you want to talk to them?!) so I picked up the lab results myself. She told me T was probably more important than chemo. Taking the T certainly isn't going to hurt so I suppose there's no urgency here, it's just discouraging.
With my high Ki-67 I was really hopeful for a good results on this test. Every test they give me ends up coming back "aggressive" and "high risk of recurrence." Honestly I'm scared.
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Mel -- I think the test is considered reliable, in that it gives the same result for the same sample regularly, but what the result means is still a question. Results on that test didn't correlate with clinical outcome as well as they had hoped so many doctors don't think it is a valid predictor of response to tamoxifen. When the initial studies showed that people who were poor metabolizers had worse outcomes, everyone got excited. Then, as the study got larger and more women were included that effect went away. So who knows? It looks like you hit your cancer hard with chemo and herceptin so try not to stress until you talk to your onco.
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Yes revkat. Plus as I dig a little deeper I'm astonished (why am I still astonished?) at the amount of conflicting information! Is there a definitive answer on anything with this disease?!? I think I'm just tired and need to get a good night of sleep. G'night all! Sweet dreams.
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Alaina and all, gosh I did NOT mean to scare anyone by saying MY own onc. says that the hot flashes/night sweats means the tamoxifen is working. I THINK what he means is that since I was chemopaused, and now post-menopausal (still w/hot flashes/night sweats) that he's not 'sweating' it (pun intended, lol)...due to menopausal symptoms/estrogen depletion.
I am VERY sorry that I said that without any clarification (really only supposition on my part here). Forgive me. Yes, EVERYONE varies in their s/e's on ANY drug that is SO true. I think to just keep reporting what one IS experiencing on your meds to your docs, just so they keep track of it...even if they have no real 'answer' for them. ALL my best to you all...I'm with Lady Madonna....there is ALWAYS conflicting info, and even conflicts within doctor teams. ~juli
We do the best we can.
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Mel ~ hoping you get some rest. My onc doesn't do that blood metabolizing test. So I take the T. Hopefully it's working.
And I haven't had hot flashes in about 2 months but chemopause has ended and I got my period back so I think that may have something to do with it. I see my onc mid November and will make a list of questions.
Have a good night all !
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Mel - my Onc. also doesn't do the test because she isn't convinced that it's reliable. I also wish there was some difinitive information regarding this.
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Same with me! I was first told I would take Tamoxifen....(Even though I am a lot older than most of the women that it is prescribed for!)
Then, #1 Onco told me I needed chemo first! ...so I said "No, I wasn't told that by the Surgeon nor the Radiologist!" He then said I should have the Oncotype test. We did that! I DIDN'T NEED CHEMO!
I went to a different Oncologist. Some Docs just "hit" you with all they can to prevent cancer from coming back! The new Oncologist said the cyp2d6 test would show if I were metabolizing the Tamoxifen! And that if I wasn't I should take Femara.....But the test said I am! Another
! But at one time my Radiologist DID say, that the test isn't always accurate, that even if you have no side-effects, that doesn't mean you are not metabolizing it. WHO knows? But we have to trust them..I've just figured out you will read EVERY different opinion on.... if it is or isn't. There are different schools of thought all over DR. Google!
And Alaina is right.. We just don't KNOW if is helping us, because we ALL are different. So much research has been done with this drug, & it DOES block estrogen from feeding any cancer cells....BUT we can only hope & pray that we don't a "different" type of cancer, somewhere down the road.
I know that if you have constipation, you can take "Docusate Sodium" which is a "stool softener" before bedtime, & THAT should help!
So many of you women have already gone through so MUCH! And you are STILL fighting this! You are my hero's...I am so proud to be among you! You give us ALL a reason to live & never give up! xoxoxoxo
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Hello Ladies,
I hope everyone is doing well. I was hoping those of you that have been on T for awhile could tell me when you started having side effects. Aside from being incredibly emotional, which hasn't been any different since I have been diagnosed:)
I have been reading online all these scary side effects and of course now I have myself all worked up. I guess the hair thinning/loss has me the most concerned. I am just ready for mine to grow back.
Any input would be great.
Thanks
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Hi, I've been on TMX since June and having awful intermittent bone/joint/ muscle stiffness. Sometimes I am in excruciating pain just walking in the mall. I used to be an athlete/marathon runner/ hiked the grand canyon last year this time. Has anyone else had the pain/stiffness? Also has anyone's oncs lowered the dose to 10 mg? I;m wondering about it since I am supposedly an excellent metabolizer of the drug, I am wondering if a lower dose will be affective in my case. I know that sometimes they up the dose for poor metabolizers? Has anyone had their TMX dose lowered?
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Waldo...
I started Tamox about a week ago. I have been having hot flashes and night sweats since before I started the Tamox.
But I hurt my back years ago while in Nursing school. I have ruptured disks and sciatic nerve pain. Well let me tell you.............. the past few days I have been in terrible pain and I wonder does it have anything to do with the Tamox??? My back aches and my leg pain is unbearable at times.
Although I have had pain on and off with my back it is usually associated with doing too much or standing for too long. But this has come out of the blue.......
Very interesting point about the lowering or raising of the dose. My Onc does not do the metabolizing test so it does not pertain to me. But will be interested to hear the feedback the post gets.
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Waldo - I'm interested in responses to this too. I can't imagine that one dosage is "one size fits all" regardless of age, weight, general health, etc. Doesn't make logical sense to me.
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Waldo,
I am so glad I found your post! I have been having tons of joint discomfort....my feet ,back , and hips. Some times worse than others. Before all of this I was a workout queen, doing cardiowt training classes etc....I feel so old now!!!! Maybe it is the Tamox. I haerd Vit D will help so I just started taking it every night.
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Since it's not one size fits all, I suggest speaking to your oncs for their recommendation. Here's what mine said:
Stop tmx for 2 weeks, if the symptoms persist, the pain is from another souurce. Increase Vit, D to 2000 mg a day, take trilisate (a gentle anti-inflammatory) for several days to assist with the vitamin D. if everything gets better, I should restart tamoxifen at one tablet mon/wed and fri and the then escalate that SLOWLY to the proper dose. I love my oncologist. I will follow his suggestions. He is not only a brillian doctor, he is a wonderful, kind and caring person and extremely handsome as well!
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Waldo - I'm having lots of joint pain too. I've been on T since May and when I saw my onco in August he said he asked me if it was debilitating. I said no but that I didn't want to be on ibuprofen for the next 5 years and he said he thought it would abate over time. So far it hasn't and when I see him again in December I might ask what we can do. It makes it sooooo hard to exercise and I never need much of an excuse to talk myself out of it. I've read that continuing to move them is supposed to help the pain and sometimes it does, as does stretching, but there are times when I feel so old and decrepit...and today's my 40th birthday. I'd much rather feel youthful and energetic and happy to be cancer-free!
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Honestly, exercise helps me, but if i relax to watch tv or when i go to bed, it is painful.
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After starting tamox 2 years ago, the side effects started kicking in after a month or two. Besides the increased hot flashes, vaginal discharge, and irritated eyes, I did notice some increased joint pain, especially in my right knee, that is still slightly there. But the neck/shoulder ache and sciatica pain are all gone, since I started doing yoga and tumeric, a natural anti inflammatory substance which is used in Indian cooking, it gives curry its yellow color. Downward facing dog position is fantastic for getting rid of any stiffness in my lower back and at the suggestion of my Onc, I've been taking tumeric powder daily with a little bit of olive oil and black pepper. Sometimes I experiment and go a week without using the powder and I notice that I start again to feel achy all over. Then I resume taking it and it gradually starts to work again until I become once again, pain free. And I've also been taking vitamin D for about a year now as well as fish oil. I also find that a brisk walk on a warm, sunny day helps too. My eyes rarely bother me anymore, hot flashes are currently not too bad, they seem to get worse and better in cycles, along with the vaginal discharge. My most troubling side effect was the complete loss of libido and responsiveness. Because of this, I decided to give myself a break from the tamox after 7 months. I stopped it for more than a month. Luckily, when I started back on it, this side effect wasn't as bad. I've also started using testosterone gel, which also helps a lot with that problem.
Now if only I could get my insomnia problem solved without having to take ambien.....
And as I've said many times before, I'm also perimenopausal, so a lot of this could be progression into menopause. The only way to really find out would be to take another break from the tamoxifen and see what effects go away. I know it's not recommended to do that, but I do contemplate it often because I really want to know the cause.
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Rose G,
Yikes, you popped my balloon, I thought that my side effects were going to stay mild but I have only been in tamox for apprx three weeks. I thought that the hot flash thing would be my only issue. I do not have great bone health as it is and I sure hope that mine are not affected. I have been having issues with my left hip since post bmx. I was down for so long after three times in the OR and thought I was doing the right thing in "taking it easy". As it turned out, I was getting soooo out of shape. I am going to get outdoors today and get some excersise and enjoy the beauty of the east coast in the US!
Hi to my sister from NJ and hello to my sister in NY (Rose and Waldo). great weather. And hello to my sisters in Wa, Va and Ireland and whereever you are, so nice to see you all here.
Peace and Love to you all ♥
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Yes the weather today was unbelievable! Rose, I cook with turmeric- can I just use that powder that I use as a spice or is there special medicinal turneric?? And if I can use it, how do I do it? 1tsp is a lot of yellow
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Does tumeric have a taste to it? If so, what does it taste like?
Jan
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I get turmeric capsules at the health food store. I am not sure if they are helping or not but still continue to take them.
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Hey Waldo!! Glad to see your post, sorry about your joint pain. I was feeling the same way. I worked out all the time and in the past 11 months hardly at all. I was hoping after chemo I could get back to it but I was feeling like I was 100 years old with my old lady hip and ankles. Literally every joint in my body ached.My onc thought it was from the abrupt shut down of estrogen due to chemo (i had not started my T yet) I tried everything then finally decided to give acupuncture a whirl.
I did 5 sessions of acupuncture and the last one was right before my exchange surgery. I went into surgery feeling about 80% better just a little stiffness in the ankles...then low and behold the day following surgery i got my period for the first time since April. Since that day I literally feel like my old self no more stiffness or joint pain at all. I don't know whether it was the acupuncture or getting my period back but I do feel the acupuncture helped quite a bit. I'm doing monthly "maintenance" sessions as well. They also seem to help me sleep as I recall what my acupuncturist is saying to me during sessions about relaxing and preparing for sleep.
I have also noticed most of the cancer centers in Baltimore have acupuncturist on site and my onc was all for it. I am now a huge fan...better than taking another pill
Hope you find some relief soon!!!
Di
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Anyone on low-dose Tamoxifen (like 5 mg)? I was reading about a study this morning that low-dose can be as effective as higher doses esp. for women with very high ER scores.
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Hey JanetinVirginia - That's interesting -- I would like to know where you read about the low-dose Tamox being as effective as higher doses. Can you post the link?
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It's hard to go back & re-trace my searches. There are a lot of them out there - I was just googling on low-dose tamoxifen, low-dose tamoxifen 2010 (because first study I found was 2003 and figured more research must have been done since then). So this wasn't an exhaustive search. I plan to ask my onc about latests studies - that's why we pay them big bucks !!
:) Just wondering if anyone's onc has gone the low-dose route.http://www.aacr.org/home/public--media/aacr-press-releases/press-releases-2003.aspx?d=188
excerpt:
The study protocol randomized 120 women with estrogen receptor (ER)-positive breast cancer to either one, five or 20 milligrams (mg) of tamoxifen daily for four weeks prior to surgery. Results in these women were compared with two non-randomized control groups - one of 34 women with ER-negative breast cancer who were recruited concurrently during the trial, and one of 29 women with ER-positive breast cancer who were recruited after randomization was complete. Changes in Ki-67 (the key identifying marker that measures tumor proliferation and which is associated with tumor shrinkage and prognosis in breast cancer) were measured in cancer tissue before and after tamoxifen treatment. Tamoxifen significantly reduced Ki-67 (p<0.001) but there was no dose response (p=0.81). All three doses reduced Ki-67 levels equally. Although more drug was measured in the tumor at the 20 mg dose, there was no correlation to increased Ki-67 reduction.
"Tamoxifen is the most widely prescribed agent in the world for the prevention and treatment of breast cancer," said Dr. Decensi. "Although tamoxifen has been studied since the 1970s, we have yet to determine the optimal biologic dose."
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