Bottle o Tamoxifen
Comments
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Oh, and I meant to mention that I've had hair loss. It seems like it's EVERYWHERE but on my head and it's driving me crazy, but the last time I got it cut she didn't seem to think it was any thinner, and I can't really tell that it is either, so maybe I'm growing just as much as I'm shedding. Who knows. I can't think about the SEs too much or I'll never make it through the 5 years. Only 4.5 more to go...
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Thanks PatMom! Thanks for your input! I know chemo causes all of your hair to fall out, depending on the type? And hair thinning is no big deal, I guess...And you are right, we can't believe everything we read. I just looked it up because I noticed the difference in me.....And wondered if anyone else had seen any difference in their hair. Sometimes maybe "Dr. Google" doesn't have the most "accurate' information.
I take the same as jan.... the Calcium, vit.D3, Multiple, fish-oil/Omega 3 & Glucosamine.
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Thanks for the heads up, Tory. I'll ask my oncologist about saunas and the risk of lymphedema. A sauna sounds so relaxing but I forget that I still might be at risk for lymphedema.
Has anyone developed lymphedema months or longer after having nodes removed?
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Hadley:
It seems to be the 2nd week of bowel issues. They seem to be ok today so it is either the T or something I ate
I also have been having 'cold' flashes...I just thought it was the change in weather here.
Let me know how you make out at the dr.
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Green, simple precautions to help lower your risk of lymphedema can be found here:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
http://www.lymphnet.org (See their Position Papers on Risk Reduction, Exercise, and Air Travel -- the one on "Risk Reduction" gives you safe temperature ranges for hot tubs and such)
Sadly enough, the risk of lymphedema is for life -- on the "Lymphedema After Surgery" forum we have women who have developed it as long as 26 years after treatment. Learning about easy life-style changes that can reduce your risk gives you the power to make your own decisions about how careful you want to be (or not!)
Be well!
Binney0 -
Green, Thanks for the info about your environmental chemicals panel and the stuff youre donign to try to cleanse out the phthalates and so forth. I've been trying to cut out products with phthalates and parabens and so forth in them and it's not that easy!
I'm going to second Binney and say that the websites she mentioned have great info about reducing your risks of LE (as well as info about LE in general). Some of our doctors (like my PS, who I love for many other reasons) really dismiss the possibility but I've met enough people with it, and read enough of the LE forum, that I ignore those who tell me not to worry about it and take the all the precautions that reasonably work into my life. It's worth looking into the question of the saunas. Just my 2 cents worth.
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Hi everyone.
I just started tamoxifen last week. I'm sooooo bloated. Has this happened to anyone else? Will it go away? I don't know what to do--my pants aren't fitting!
That seems to be my only symptom, except for a general feeling of "blah" (but I'm more inclined to blame Halloween candy for that!).
1 week down, 4 years, 51 weeks to go....
hugs,
Jenny
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lol...good luck Jenny. I was on tamoxifen for 3 1/2 years, and yep, that darned bloating. But, I also was chemopaused, so lots of my s/e's could be blamed on being slap-BAMMED into menopause in one day (day of first taxol). Now I'm on Aromasin, still bloated, water-weight, menopause symptoms (hot flashes, night sweats). Feeling of 'bleahhhhh' did happen on Tamox, but it also happened during radiation (just before the tamoxifen), so not sure WHAT to blame s/e's on really! BEST to you and all the newbies on Tamox....juli
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Oh yeah, Juli, I just came out of chemo too, and am chempaused, so that could be part of it too.
I was pretty "blaaah" during rads too, but it seems worse now.
Sigh! I just hope I can feel good someday. I get depressed sometimes thinking that it's hopeless--what I haven't damaged with cancer meds will just start feeling crummy as I age anyway...
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Thanks all for pointing out hair thinning as a SE of tamox.
I thought I had read the Herceptin slowed hair regrowth, so I wasn't too awfully panicked at first that my hair seems thinner. I finished H almost 3 months ago and was expecting it to start to fill in. However it hasn't returned to pre-chemo and I was starting to worry that this was it! I know it still may not return to its original state, but at least now I can spend the next 4 1/2 years blaming it on tamox.
Denial?maybe.0 -
Ah, Jenny! You will feel good, it's not hopeless, you're fighting a dreadful disease, and you will win the fight. We all age and feel it, that's inevitable. Hope your blahs get better, my dear. That's what this place is here for!
~juli
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Jenny
I find that walking daily helps with the bloating.
Jan
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I didn't get the hair thinning with tamox (3 1/2 years on it), but definitely am getting it with Aromasin now, almost immediately. Drat...:( ~juli
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For those of you who have had the cyp test (cant remember the numbers) did your doc order it because you asked him for it or was it routine? My onco doesn't seem the think there is enough agreement as to the value of the test results in helping determine the tx. He indicates I'd have to take it anyway. Not many alternatives. What do you think?
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My onc said she ordered it routinely. BUT she also said that the results can pose problems--like, what do you do if you find out you're not a good metabolizer? Do you take it as normal and hope it still works (there is some evidence it might, apparently)? Do you up the dose? Do you get all agressive and take out your ovaries? (A possibility for me considering my age--just turned 40 a couple of weeks ago--but she didn't seem too keen on it anyway...) She wanted me to think about those questions while we were waiting for results.
Luckily, I came back as a "normal" metabolizer, because I don't know exactly what I would have done if I wasn't!
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Thanks for the info on lymphedema! I will keep it in mind (as much as I can - my memory ain't what it use to be) but won't obess over it.
Just a note on feeling down - I find that deep breathing and repeating positive affirmations helps - a good one is "Every day in every way, I'm getting better and better." I also have started meditation and doing Qi gong.
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Morning friends! It's the Cyp2d6 test...for metabolizing Tamoxifen. You know, maybe 15 years ago, they didn't even HAVE that test, but my friend took it anyway. She is still cancer-free after 13 years....she took Tamoxifen for the 5....And told me one of the advantages are, it does not damage your bones! Today is my 11th month!!!!!!!! I also know that probably 1/2 of the Docs don't order this test before prescribing Tamoxifen. They (sometimes) prefer the "newer" drugs to help fight this.... I finally begged for the test, after being on it for 2 months, & I'm a "good" metabolizer!
I think, by looking back on these last 11 months, I DID have almost all of the SE's at one time or another!
But they didn't hang in there! The SE's just come & go at their own free will! But I really think the combination of vitamins helps soooooooooo much! MAYbe, because our cancers were all "different" and our ages are all over the place, THAT makes a difference in how we metabolize AND get side effects...! At least that's in my own mind, about how this works.0 -
ECT, my onc ordered it because I asked for it. She doesn't routinely order it, but said more places, such as the Mayo Clinic, are starting to order the CYP2D6 test for anyone on tamoxifen. Mine showed me to be a very good metabolizer, which helped put my mind at rest about taking the tamoxifen. Not sure what I would have done if the results were different. I've had mild SEs, so far after 5 months, so best case scanario. I find the lack of options to tamoxifen very frustrating!
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Dear Tamox Sisters--I've been taking Tamoxifen for 18 months, but my cancer came back anyway. My onc wants to start me on an injection a month instead. So I have a bottle of Tamoxifen Citrate, 20 mg., 90 pills, that just came in the mail. And my onc pulled me off of them cold turkey. I hate to just throw them out, so I thought I'd offer them up here to anyone having trouble affording it. Just send me a private message. I may not be able to send quickly as I'm busy with tests and treatment, but be patient and I'll send them out.
Good Luck to us All.
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camazur: I am so sorry to hear about your recurrence. VERY best of luck to you on your tests and treatments. What treatments will you be undergoing now? BTW: My BF is from Canajoharie, is that near Fort Montgomery? (I am from Syracuse, NY) ALL my best~~~~juli
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CandyB: Just found this today on the cancer institute's clinical trials section:
http://www.cancer.gov/clinicaltrials/results/summary/2006/letrozole0106
Maybe this will be helpful...juli
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ECT, my onc orders the test as an "advisory" piece of the puzzle but now I am in the very boat you're alluding to... my results were intermediate and suggest that I use alternate therapy, i.e. ooph/hyst with an AI. Or just keep taking Tam and hope I'm getting some benefit. My situation is a little more complicated by the research I've read linking unmetabolized Tam binding to Her2+ cells and fueling bc growth.... ***POSSIBLY*** It's probably not as complicated in Her2- women.
Juli, thanks for the link. My onc keeps telling me AI's are superior, so you're in good shape!
Camazur, I'm so sorry...
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Melanie: Yes, but Tamoxifen IS the best choice for bone health...the AIs definitely for now-post-menopausal treatments, but hell on bones.
Found more info I just faxed to my oncologist and PCP on the bone density issues (under vitamin d thread here). ~juli0 -
Juli--I am near West Point Military Academy. Never heard of Canajoharie...NY is a big state. I am 40 miles north of NYC. My onc is proposing radiation, but no chemo at this time. I am getting a PET scan monday and a second opinion. I'm all for whatever works. And got good news--all clean margins, so no more surgery at this time. I'd had a bilat-mast 18 months ago to keep it from coming back, but still got cancerous lumps, dammit. Cancer really sucks, am I right, Ladies? This is my 2nd recurrence.
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ah camazur, I'm so sorry, yes cancer SUCKS! (I was thinking of Montgomery County where Canajoharie is, sorry!)...yes NY is HUGE, most people think if you say you're from NY, you mean NY CITY...lol. You are just south of us by about 2 hours, we've been to Newburgh. BF used to drive tractor-trailer in NYC...ughs...no more.
Good luck on the PET scan, hope all you need is radiation, seeing as you did have the mast? GREAT news on the clear margins~!!! Can I ask what injection you get monthly? WISH you all the best, keep us posted? ~juli
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Juli - is the name of the thread Vitamin D? Is it under Hormonal Treatments or Alternative? Thanks.
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HI Virginia: here it is...http://community.breastcancer.org/forum/79/topic/741446
LOTS of info on Vitamin D that I learned alot of this year. ~juli
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I had to request they CYP2D6 test. At that time ... April or Mayish I wasn't having any side effects of Tamoxifen. I think I jinxed myself! I now have horrendous hot flashes, joint pain, have had hair thinning and muscle pain. Mood swings not sure if Tamoxifen or just learning to accept this dx. I am 10 months from bilateral mx. The point is if you are not having a lot of SE why not test so you at least know if you are metabolizing.
What I wonder is why don't they do more testing for what is effective for pre-menopausal? Seems to me there are an awful lot of younger women out there being diagnosed. I am 54 but just late for going through menopause.
camazur I wish you the best.
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Julie--I forgot the name of the injection already (had chemo twice, its a wonder I remember my name) but I'm seeing onc again next Thursday and will write it down.
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Hi Camazur...sorry to hear about your recurrance. Cancer does suck!! How did your hair come back in by the way? Remember me...the lady with the cute wig??
Wishing you all the best on your PET scan. May it be FREE And CLEAR!
Lisa
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