Bottle o Tamoxifen
Comments
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Morning Girls! I tried the Melatonin for 2 nights now, & I seem to be sleeping better! And not as much dreaming! It might work for me....I DO know to take the vitamins in the mornings, because if you have heart burn, taking them at night just made it worse....for me anyway!
Got my tomato seeds planted last week!
Now I just have to wait! This year I am trying that Tomato Pie recipe I heard about! Hang in there kickingitsass! It's Spring now, & we'll all feel better! xoxoxo Jeannette
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Wow! I missed a few days since we went out of town and wanted to try to "catch-up" before work today. I didn't realize it would take me 45 minutes to go through everything I've missed!
Chevyboy: glad you stopped the grapefruit! I know we miss eating it at our house. Berries are my new favorite fruit and thankfully they are in the stores more reasonably now. I would not have guessed you were in your 70's though. Good for you being so active at your age and gardening!
Kawee: If you haven't looked at the pdf chart on this site under the hormonal therapies you should. It does list side-by-side comparisions of different meds. Tamox definitely seems to be the "safest".
Sleep........well after a trip this weekend where I was sleeping literally on a sleeping bag on the floor for 2 nights....I was thankful to have my own bed last night. I fell asleep before 9 but was up about 4 times in the night. Still better. Keep ice packs in your freezer. It will cool you down quickly so you can get back to sleep when it is over.
I thought the cranky moods comments were funny.....sometimes it IS them though and not the Tamox! I don't feel like I get crabby (maybe I react that way at work though) but at home I will cry at silly things that I can't do (like opening tomato sauce cans). I just think of it as being pregnant hormones and up all night as my "t-baby" that needs tending too.
I hope evereyone has a week of few SE!
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Kicking, no my doctor did not authorize that tamoxifen break. It was my own idea because I was still ambivalent about being on it and I saw that a couple of women on these boards had done it for a few weeks with their Onc's approval. I did 6 wks because I knew that it can take that long to get it out of your system. I knew my Onc would never approve, so I didn't tell him about it until afterward. And he was a bit horrified of course, but glad that I had started back on it again.
As far as natural remedies, I take herbals suggested by my Onc. Tumeric for the joint pain because it's an anti inflammatory and a common ingredient in Indian cooking. And tincture of rhubarb for the hot flashes. Had to order that online and it's hard to find info about that anywhere, so not sure where my Onc heard about it.
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Wow, rgiuff, you have an onc that actually knows something about nutrients and natural remedies - I'm impressed!
Kickingitsass, now I better understand your reluctance to take a chance on tamoxifen. Your comments on depression and using running to control it, plus all the stuff here about foods recently too, stimulated a few new thoughts that I'll throw out.
First, there are strong data showing that eating 5-9 colorful fruits and veggies every day, plus exercising to the level of brisk walking 3-5 hrs/wk, together (you need both) reduce the likelihood of recurrence somewhere about 50%. This to me is amazing - a good diet and very reasonable exercise is AS GOOD OR BETTER THAN tamoxifen (and other chemos, for that matter). What we don't know is if this effect is additive to tamoxifen's effect or not. In other words, does tamox ~halve your recurrence chance, and then good diet/exercise ~halves it again, or do you only get that halving once, so that adding tamox to good diet/exercise (or vice versa) does nothing additional? Unfortunately, no studies have been done to tease that apart. (In addition, some of the people who already eat/exercise like this are mixed into the general recurrence estimates we're given, so it's not clear that we truly get 50% benefit above the estimates for the general popn, but within that popn, those who eat/exercise well do have better outcomes than those who don't.) Further, obesity is associated with a ~50% higher recurrence rate than slenderness. Further still, there are tons of foods shown to have "anti-cancer" properties (turmeric, garlic, onions, flaxseed, green tea, etc. etc., many of which we get if we eat the 5-9 fruits & veggies/day). You can find all this info in a very informative (if not completely well-written) book called Anti-Cancer. Given all this, one thought is that you could make a deal with yourself that if you skip tamoxifen, you will make lifestyle adjustments to take its place - e.g., you will eat tons of veggies/fruits/anti-cancer foods, and you will do your running daily, and you will maintain a healthy weight. Maybe you already do all this, so you've already got this great benefit (and the heck with tamox!).
A second thought is about interpretation of non-recurrence (recurrence free) estimates. We have to recognize that these are given per a certain time frame, usually per 10 years. So, if we use the # given for me, which was about 90% nonrecurrence likelihood per decade, my lifetime risk isn't 10%, but rather it's 10% per decade that adds up over the decades (this is rarely described by docs...not sure they all understand it themselves). So, without tamoxifen, my cumulative likelihood of being recurrence-free is 90% in 10 years, 81% over 20 years (0.9x0.9, expressed in %), 73% over 30 years (.9*.9*.9), 66% over 40 years, etc. In comparison, if tamox reduces my likelihood by half, so that my nonrecurrence likelihood is 95%/decade, then the #s go as 95% over 10 yrs, 91% (.95*.95) over 20 yrs, 86% over 30 yrs, 81% over 40 yrs, etc. (Sorry if I'm scaring anyone...this is just the way these things work). The bottom line is, whether the 90%-->95%/decade bump is worth it to me partly depends on my starting age, since I have a different life expectancy (separate from BC) if I'm 30 or 70 when I start tamoxifen. (I'm actually 47) IMHO everyone contemplating any of these drugs should consider lifetime risk, which depends on your starting age, not just the per decade #s that are usually given.
Anyway, just some more grist for the mill. I for one will support you whatever you decide to do, as you know what your values and priorities are, and I most definitely support that it's YOUR decision (not the doc's).
To the person who gave the link to the breast density measurement as a marker for tamox being effective - thanks (sorry, not going to go back to find it) - really interesting!
CS
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RG - Thanks for the suggestion about turmeric! I'll definitely try that out. I've had joint issues for years, and have done well on daily glucosamine and flax seed oil plus strengthening/ stretching exercises, but adding to the food-based pharmacopeia is worth a go.
CS - I really appreciate the time you took to give me a well-reasoned and scientific (from the sound of it) approach to looking at Tamox vs alternatives. I will read that book and any other references you can suggest, and I think you've provided me a viable recourse. I have been self-medicating with exercise for 25 years (I'm now 40), but I could certainly improve the quality of my diet. Actually, in the last month I've cut way back on junk food (formerly a burgervore) and alcohol (from 2/day to 2/wk), just because it seemed a good idea. Funny, I sleep so much better now without the alcohol, even though I'd crept up to that quantity trying to manage chemo-induced insomnia. So I am at a teachable moment for adding in all the fruits/veggies.
As far as the math of recurrence reduction, that all made perfect sense. It's only logical that each additional year any person survives, the greater their chance of succumbing to something. That's why we celebrate birthdays! As you pointed out, the healthy-lifestyle people are included in the overall popn for risk probabilities, but so are the unhealthy-lifestyle folks, as well as the genetically screwed folks.
From my understanding of risk reduction factors, they are all additive. At least, that's the way I've seen it calculated on a few websites. Supposedly, surgery alone "cures" 70 percent of BC (meaning that 70 of 100 patients don't die of BC, but of something else). Then chemo knocks down the risk by about 30% (0.70 x 0.30), so we're at 21% recurrence risk. Herceptin, for those of us with HER+ tumors, drops it by another 50% (0.21 x 0.50) so that's 10.5% risk. Radiation, if I had chosen to do it contributes a whopping 66% (0.21 x 0.66), which would have put me at 7% risk. [However, ther is some evidence that rad increases the occurrence of other radiogenic cancers after about 15 years. So again, how good it is depends on how many decades you plan on living beyond your initial diagnosis.] Tamox, with an assumed 50% reduction, was supposed to take me to 3.5% risk. That was my onc-team's plan, and it's based on an accepted standard of practice that protects them from litigation. i would guess that the fruit/veg/exercise plan would mathematically replace T in my case, and I would guess the docs don't promote that more aggressively because it's much easier to get compliance with prescribing a pill than (what would be for most Americans) a massive lifestyle overhaul. Also, a lot of oncology research is funded by pharmaceutical companies, and what benefit would they get from promoting organic foods and sunshine? (Ach, there's my rebellious side coming out again.)
Many thanks for the thought-provoking discussion! I wish you many many years of good health, curiousity, and happiness!
Ali
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Hi Kicking....
My recurrance risk factor for my 2/3 breast is about 5% with T (following surgery and radiation) but I understand it will reduce recurrance in my 3/3 breast by 50%. That's why I am taking it.
take care all
C
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Hello all...this is day 21 of taking the tamoxifen....I think it's making my knees ache terribly. I was always one to sit with my legs curled up underneath me....I'm learning not to do that now as I have a hard time untangling myself from the stiffness. I was already having the hot flashes due to the chemo putting me in menopause (which I hope is not temporary). I do feel like I'm gaining weight since I've been on it. It does feel like it's starting to impact on my mood too. Sort of like PMS although with a less angry feeling and more of a sad feeling. This usually occurs in the evening and lasts essentially until I go to sleep. I won't take antidepressants so will have to just deal. My Doc talks like the arimidex is better....said if my menstrual cycle does not return by October, I can d/c the tamoxifen and start the arimidex. We also talked about possibility of removing the ovaries if my period returns. And, in terms of risk...my doc told me that even if they did everything perfectly....the surgery, the chemo, the radiation (which I couldn't have due to lupus), and the hormone therapy, there would be a 20% chance that it will recur somewhere else in my body in my lifetime. I see her in a few weeks and am going to discuss how much of an impact the tamoxifen will really have....and decide from there.
Thanks for reading....take care all.
GML
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Morning All, I've been lurking for a couple of weeks as I go through recovery, Dr. appts, etc. I've started Tamoxifen today and am grateful that I have found this Forum! Hopefully my side effects will be non-existent or at least minimal. I'm going to try and update my journey on a daily basis here and on my blog (www.wineonthebeach.blogspot.com)
I wish you ladies the best and again I am so grateful I found you all.
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Hey GML and Grateful1, Since you're in the very, very first stages of tamoxifen, I'll just note that at least for some of us the SEs felt in the first couple of months were temporary, and they eased off after a bit. (I feel like I'm jinxing myself by even saying it, but that's my experience, cross-fingers it holds up!!!) So, don't automatically assume you will have to put up with your early side effects for 5 yrs. No one can guarantee they will subside, obviously, but for some people they do and that's hope worth hanging onto through the first few months.
CS
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kickingitsass,
Yes, all the different modes of trtmt add up like you say, similar to the time adding up like I showed. How exactly they add up for any pt really depends on the characteristics of each cancer case, but the #s you gave are typical.
As for docs not pushing the diet/exercise (lifestyle) changes, yeah, I'm really disappointed in that too. I agree some probably don't because they don't believe in it or because they don't think patients will do it, but I also think part of the cause is that many are just ignorant about them. Part of me says they've got enough to keep up w/in their own specialty so I'll give them a pass, but then part of me says that they ought to be aware of all proven treatments and give pts that data, esp when its as good as their drugs in some instances! Docs for diabetes & obesity do say they just can't get the vast majority of their pts to make the lifestyle changes that would work inst of drugs. However, I think many cancer pts, at least BC pts, are really motivated since cancer seems so immediately threatenting that, given the right info, many many of us would make adjustments. I know I have. Sigh. We just have to take these things into our own hands.
Good luck to you making your decision about tam!
CS
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Hi team!
I've been having some joint pain and a 'crampy' feeling from Tamox. For the past month I've been seeing the cancer center's psychiatrist for post-treatment depression and help dealing with my mom's illness. She put me on Effexor XR and we've been gradually increasing my dose. This weekend my new dose finally 'kicked in'.
I feel really different. I've never been so optimistic and happy.
The weird thing is that while I still have the side effects from Tamox, they just aren't bothering me as much anymore. Maybe I'm not focusing so much on them. My psych told me that when you're depressed, things hurt more. When you're sick, you feel sicker than the average person. When your hip joints are sore... well, you get the picture. 
Just putting that out there in case it can do somebody some good.
Have a great Wednesday, everybody!!!
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Hi all,
So glad to find this thread. Am currently having radiotherapy and am supposed to start tamox two weeks after finishing the rads.
I have posted on another thread about how the tamox has caused me more sleepless nights then when I got my diagnosis. My cancer is stage 1, grade 1 IDC, 1.3cm with widely clear margins and sentinel node negative. I too have done loads of research and really feel at this stage I won't be taking the tamox. Oestrogen has such a diverse role on the body and brain that I don't feel the risks to me are worth the small additional benefit.
I understand everyone has their own point of view on this and it is a decision for us all to make individually. My medical onc obviously wants me to take it but i just wonder if any of these medics give guidance outside of the established standards of treatment. I am thinking of getting a second opinion on this as I have a month of rads to go yet so don't have to make my ultimate decision for a while.
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ALL I NEED TO KNOW, I LEARNED FROM THE EASTER BUNNY!
Everyone needs a friend who is all ears.
There's no such thing as too much candy.
All work and no play can make you a basket case.
A cute tail attracts a lot of attention.
Everyone is entitled to a bad hare day.
Let happy thoughts multiply like rabbits.
Some body parts should be floppy.
Keep your paws off of other people's jelly beans.
Good things come in small, sugar coated packages.
The grass is always greener in someone else's basket.
To show your true colors,
you have to come out of the shell.
The best things in life are still sweet and gooey.
Happy Easter!
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Nine Ways To Know Your Deprived Of Your Estrogen:
1. Everyone around you has an attitude problem.
2. You're adding chocolate chips to your cheese omelet.
3. The dryer has shrunk every last pair of your jeans.
4. Your husband is suddenly agreeing to everything you say.
5. You ‘re using your cellular phone to dial up every bumper sticker that says: ‘How's my driving-call 1- 800-'.
6. Everyone's head looks like an invitation to batting practice.
7. Everyone seems to have just landed here from ‘outer space'
8. You're sure that everyone is scheming to drive you crazy.
9. The ibuprofen bottle is empty and you bought it yesterday.0 -
Catbird - Thanks, that was a good chuckle! Usually I just munch on dark chocolate while I'm cooking, not mix it in, but I'll have to give it a try.
Irish47 - I think a lot depends on the rapport you develop with your doc, as far as whether she'll do some extra research or be willing to act outside of standard orders on your behalf. Finding a doc you like and can talk with may be the most important factor in receiving appropriate, customized care. If you don't feel you have that kind of trust with your current doc, maybe try asking friends, nurses, social workers, or other patients if they can recommend a different doctor for a second opinion. A different doc may agree with your inclination to skip Tamox, or may be able to give you an acceptable reason to go ahead with it, but the hope is that you would feel comfortable with the decision.
Speaking from strange experience, the first doctor told me I was stupid for not noticing I had a uterine tumor, and the second doctor told me "don't worry, those are very common, but you really should get a mammogram while we're at it" (which saved my life).
Repeating the good advice of many on this board, we have to advocate for ourselves, ask a lot of questions, and listen to our own instincts as well as the conventional wisdom.
Sparrow - I'm SO happy to hear that you've found a brighter spot! Whatever works, and I'm glad it's working for you! Three cheers, and hugs all 'round!
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LOL chevyboy & catbirdc! Thanks for the cute perspectives!
irish47, there's been a lot of discussion in the last 2-3 pages on this thread (and I'm sure before...I just haven't read it all) about different considerations for/agst taking tamox so if you haven't read them already you might do so. And by all means get a second opinion about it! I know that made me feel better about my treatment decisions.
CS
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Morning girls! Yes, we have to always research as much as we can, try things "they" tell us to, & then see how we feel! I've been on the T pill for 3 months now, & I'm still here! Ha! Really no bad side effects, & I'm one of the few who doesn't get the hot-flashes....just snippy once in awhile, but I figure I deserve it! (or THEY deserve it)
And Kicking....you are right...we don't have to stick with one Doc, if we aren't comfortable with them! My first Oncologist was pretty sure I should have been on Chemo....But neither my Surgeon nor Radiologist said anything about it....Besides they probably thought I was too darn old for it to make any difference, Ha! So he reluctantly gave me the prescription for Tamoxifen... but he ordered the CYP2d test, & it confirmed that since I was a "20" I wouldn't have benefited from the chemo...(low end of the Intermediate range) ...But I switched Oncologists, "just because" and I like the new gal better.
Thanks CatbirdC...I loved that post! I think we could all add a few of our own!
Hi Irish47..... I know! The sleepless nights are a nuisance! I started on the Melatonin a few nights ago, & it does help! But we have to do what's best for "us!"....My new oncologist thought Femara would be better than the T pill, but I read all the posts about THAT one, & didn't even want to give it a try....These old bones couldn't take the aggravation...
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Chevyboy and Catbird: funny! Nice way to start my day with a smile!
Irish: I agree, get a second opinion before you opt out of Tamox. My onco said SE for many go in spurts for just a few months at a time. My hot flashes only really bother me too much at night when I wake up and get an ice pack to cool down. Of course as you get older you get up at night to go the bathroom anyway....so I just do it all at once. Made it last night with just 2 times of getting out of bed. I chose Tamox since I have one "good" breast left and don't want it showing up there!
I hope everyone has a great SE free day/evening!
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Irish, I agree with the others. It can't hurt to get a second opinion. Everyone responds differently to T and most women tolerate it pretty well. Good luck with whatever you decide to do.
Haha, Catbird!
I can especially relate to #3. Chevyboy, thanks for the laughs! Thanks, kicking!
I can't believe your doctor called you stupid, good grief! Glad you got the mammogram- and another doctor. I was diagnosed by accident too. I broke a rib sneezing too hard when I had a bad cold last year. I ended up in the ER on Easter Sunday. They asked me to make a follow up appointment with a PCP who gave me a physical and insisted I get a mammogram. The rest is history... 0 -
Good morning gals! I have been taking Melatonin, to help me sleep, & I found this rather long article...I would have posted the whole thing, but it would have taken up too much room.....Hope this helps if you have questions about Melatonin! Jeannette
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Just want to wish everyone here a very Happy Easter! I hope you all have a great day!
We are going to church Sunday morning, and, then to my sister-in-law's for a big family dinner. Later in the day, we will have an Easter egg hunt for the kiddies. I can't wait! It is always so much fun to see the excitement of them running around trying to get the eggs.
I have been so surprised. I have gotten several Easter baskets from friends and family loaded with candy and gifts. I never expected it, but, am truly grateful!
Enjoy your day and pray you all have some sunshine!
♥ Susie
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Here is your Easter Funny! ♥ Susie
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Hello Everyone,
I have not posted here before. I have been on tamoxifen for 6 weeks. Well, that is, until two days ago when I quit. I was having terrible joint and muscle pain that hit like a mac truck two weeks after I started. I was going to give it until June and decide, but I just couldn't make it that far. And the weight gain! 6 lbs in one month.
In two days off Tamoxifen, I already feel a LOT better. My body is pretty confused, but I am not in so much pain.
My oncologist had only this to say: "Muscle/joint pain is not typical on tamoxifen. Be sure to keep exercising to stay strong." Hello? How can I exercise when it's like ground glass in my joints?????
Anyone else have this sort of harsh response to tamoxifen? I was taking 10mg twice a day.
Bonnie
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BonnieSF, Sorry to hear you've had such a hard time on the tamox. I'm surprised your onc said what you quote, since at least "bone pain" is a known SE of tamox. And it seems like one person might experience (or describe) bone pain as joint pain. Maybe get a 2nd opinion from another onc?
As several of us have shared in the past, for our joint issues (whether associated with tamox or not), glucosamine/chondroitin supplements are amazingly helpful in relieving pain and creakiness. My DH & I both take it. You could try it to help your joints recover, whether or not you start the tamox again.
I feel like a stuck record over the last few weeks on this thread but since you're new to it I will say again that my initial SEs mostly subsided after about 10 wks. That said, I will also note they were NOT bone, joint, or muscle pain. That gives you one datapoint for a time frame of initial SEs petering out if you're thinking you'd really like to stay on tamox if you had some possibility that your SEs might subside. BUT the tamox SE experience seems to be so variable from woman to woman that there's absolutely no guarantee that your SEs would subside if you stuck it out a bit longer. Possible, but no telling how likely.
Best wishes to you in recovering from the last 6 wks and deciding on how to proceed.
Happy weekend everyone!
CS
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|Hi CS & Bonnie....You are right CS....I never had the hot flashes! And I DO take Glucosamine along with the other vitamins, & I only had joint pain in one hand for a couple days....Don't even know if that was the Tamoxifen. But everyone is different...And rather than try the Femara or the Arimidex, I'm sticking with the T pill. There are a lot of posts on the other threads about Femara & Arimidex....but then some gals, choose not to go any further....It's hard enough to have cancer, but the side effects from the treatments are sometimes even worse!
Love your Bunny, Susie! HAPPY EASTER EVERYONE!
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Hope everyone has a great weekend and a HAPPY EASTER
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Thanks for the laughs tonight ladies! I love the Easter ones and the estrogen one! Even my husband cracked up readiing over my shoulder. May everyone have a nice and quiet and restful and SE free Easter weekend!
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Hi ladies. This is my first post on this thread. I have finished 1 week of tamoxifen. woo HOO. It was so hard to swallow that first pill on Monday. Not sure why ~ guess another fear of the unknown. Only side effect I have had this week is loss of appetite. I am glad for that at the moment as I have some chemo weight I need to LOSE ! So will take it for now ~ Hope everyone has a nice weekend.
Alicia
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Het "T" Sisters! Thanks for all your sweet posts, I think of you all so much. I pray for you to get strenght for Doc appt & treatments. I hope all are feeling stronger each day! I been busy this week,&iam sorry I havn't post but I been checking in & reading . I want to give all my "t" Buddies {{hugs}} for all the Healing !
Prayers to all! Well after 3 months 1 week & 5 surgery most I started Back at American Red Cross this week. Was very Excited,But I am exhausted ,Taking it slow to get back in my routine again! But was a great week getting back to friends & Donors. I appreciate my warm welcome back!, I am very Tired & will be so glad to rest tomorrow! I am taking Vitamins & Iron & Just finsh up 2 week of Antibotics , I am still taking a mini Vac from Tamoxinfen,But will see My onococgist again April 22 for labs & check up etc~! I am frustrated with my energy Level, but I know I will get stronger every day! I appreciate all your Prayers ,Fianlly staring feel like me again, just want more energy! Hope all of you are well! Thanks again & Love ya all! Hope you have A wonderful Easter weekend!! {{hugs}} Gina
All I need to know I learned from the Easter Bunny! Don't put all your eggs in one basket. Everyone needs a friend who is all ears. There's no such thing as too much candy. All work and no play can make you a basket case. A cute tail attracts a lot of attention. Everyone is entitled to a bad hare day. Let happy thoughts multiply like rabbits. Somebody parts should be floppy. Keep your paws off of other people's jelly beans. Good things come in small, sugar coated packages. The grass is always greener in someone else's basket. To show your true colors, you have to come out of the shell. The best things in life are still sweet and gooey. May the joy of the season fill your heart. AND MAY GOD BLESS YOU! Happy Easter!!
Love Ya Pink Pals ! xoxx Gina
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Hi TamoxiBunnies !!!!!
Glad you enjoyed the 9 Ways You Know Your Estrogen Deprived....LOL. And I agree that we could each probably add their own to it. I think mine would be:
You know your estrogen deprived when your eyeballs get so dusty you could write Big T on them.
I wanted to wish everyone a very Happy Easter and as SE free as possible.
Bonnie
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