Bottle o Tamoxifen
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Many of the women on this site have complained of leg cramps. Some suggested putting an unwrapped bar of soap under the covers at the end of the bed. I thought it helped for a little while but am not sure. The leg cramps have lessened a lot. The only citrus fruit that I have been told you really need to avoid is grapefruit.
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I started two weeks ago. I take it before bed, hoping to avoid side effects. So far just waking up once or twice a night feeling warm, but fades away pretty quickly. Does it matter what time of day you take Tamoxifin.
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My oncologist told me to not have any grapefruit while on it. They also said the quinine in tonic water would help. It does help some, but still struggling. Just wondered if anyone had any more ideas.
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Hi all, just a quick check in to say my surgery today went well by all indications. Thanks to everyone for your thoughts and prayers and "being with me" today, it made it easier and I'm sure I'll heal faster because of it. I posted a longer note about how I'm feeling on the Breast Reconstruction/Exchange City thread and need to stop typing so will send you there if you want a longer scoop. Thanks again for support!
P.S. Chevyboy, yes the "exchange surgery" is where the plastic surgeon replaces a tissue expander, which was inflated with saline to stretch the muscle and skin to make space for an implany, with a final implant.
PPS I will have some input on citrus and benedryl and tangeritin but I really must stop typing! See the BCO info page on tamoxifen - it's actually quite good and discusses benedryl and (I think) grapefruit: http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp
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Koryn - I feel silly for asking this (and lazy for not googling), but where do you put the progesterone cream?
I started T less than a week ago and haven't had any hot flashes yet, but I've had really nasty menstrual-type cramps. The ones yesterday morning actually radiated to my thigh too. I had to go back to bed for a bit, reminded me of the awful cramps I got in high school when I'd be up at 4am and then so exhausted by the time they stopped that I couldn't drag myself to school. Ugh.
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Thanks 7777! I checked out that web-site, & it even has a diagram of "how" Tamoxifen works! And the explanation for the "exchange" is sort of what I had figured out! And it's always good to re-post information, like about not having Grapefruit while on tamoxifen! I just still wonder about those huge oranges that are everywhere this time of year! Or even orange juice!
I had the leg cramps, EVERYwhere in my legs for awhile...mostly towards morning.....but THAT problem seems to be better.....just notice it once in awhile. Taking the Melatonin at night, really helps a lot, as for staying asleep & not dreaming so much!
It seems to me like all of these side-effects come & go! Some stay for awhile, & then move on to give us something else! I just wish I could find something to help this diarrhea problem! I chew a pepto-bismol tablet, but I'm thinkin' about maybe trying 5 or 20? Ha!
I'm back to Radiologist today, for check-up....And I'm taking all my questions of "just about everything" I can think of! Okay....of to jump-start this day! xoxoxoxo
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Tory-
there is a great book that talks about how and where to use progesterone cream but it is also the same book that says you shouldn't use Tamoxifen! Ha ha! Read for yourself and decide. Here is the online book link to the book What Your Doctor May Not Tell You ABout Breast Cancer. Go to pages by clicking on the little arrows at the top and find the chapter you want to read. This link doesn't give the whole book, but the actual book gives the instructions. I found this link on line to help you understand its use a little more Q & A natural progesterone cream<-----
I didn't use the Tamoxifen for 9 months since my periods had stopped following chemo and this was a protocol my oncologist felt compfortable with. (I did try it for 3 months but hated the green discharge so stopped). As soon as my cycles started back up so did the extreme breast tenderness and pain. It was as if my natural breast was swimming in estrogen. I will be honest, it scared me. I had a friend who chose a double MX and when they removed the unaffected breast it had DCIS. She said that breast had been so tender her whole adult life that she didn't want to even breast feed because it hurt so much. It was another cancer just waiting to happen.I couldn't help but wonder if that was going to be me and my remaining breast. I thought I would give Tam. a try again. It has only been 10 days now on it but the hot flashes are tollerable. Maybe once a day and pretty mild. I do think that the Progesterone cream is helping to keep them under control.
Now if I could just figure out these leg cramps!
I put the cream on a different place each time. I rotate it, backs of arms, belly, chest, thighs and continue that cycle for 25 days, then go off 5 days. During that 5 days I am having a period. These same instructions are in the Dr. Lee book.
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I can tell you quinine does indeed help with leg cramping. It is a problem with liver patients (for those who don't know my husband is a transplant recipient). He had been given quinine pills by his hepatologist as an "off-label" use to help with his. They nocked them right now. The problem with that is now the FDA has come out and said it cannot be prescribed for off-label uses any longer.....so the only option is tonic water....which tastes disgusting! When we each tried it we thought it tasted like the ice maker was moldy or something!
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If the FDA doesn't approve it for leg cramps, why not? My mother in law bought some at CVS last May here in my home town. I remember it well! She had leg cramps. I am going to go over there and see if they still sell it. What are the risks? Do any of you know? Does anyone know why the connection with leg cramps to Tamoxifen?
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Okay so I just read that one of the risks of taking Quinine is blodd clotting. Tamoxifen already brings with it that risk so perhaps it is not a good idea. Sigh. I'm going to go buy a bunch of bananas!
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Koryn - Thanks for the links! I'll check it out. I have an onc appt tomorrow and plan to talk about battling the SEs...If I can remember, I'll ask why T causes leg cramps.0
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cs7777, glad to hear your surgery went well. I have mine on Thursday. I hope you are resting and feeling well.
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I imagine they stopped approving for off-label use because of clotting issues. With liver patients though it isn't a problem because they loose their clotting ability and have nosebleeds just sitting there for no reason. I haven't had leg cramps but get them in my feet instead. More bananas for me!
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I had those same crazy foot charlie horses last week too! Owie! But yesterday I picked up bananas AND a bottle of potassium (each pill has only 3% daily potassium amount recommended) and last night - NO LEG CRAMPS for the first time since starting Tamoxifen 12 days ago! I read that a banana has 450 mg of potassium in it.The recommended daily allowance for adults is 4,700 mg! (That's 10 + bananas a day! ) Other foods to get potassium from are dark leafy greens, sweet potatoes, broccoli, oranges, peaches catelopes, apricots, nearly all dairy products and you guessed it.....grapefruit! Ha! You can evidently overdose on potassium and harm your kidneys so go easy.
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Yes, you can defnitely OD on any vitamins. People tend to think they are safe since they are vitamins. But 10 bananas a day would be too much for me!
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So I am sitting here in a fog! If it wasn't the gate slamming from the neighbors house, (it is connected by 2 posts between our houses) at 2 in the morning, it was those AWFUL leg cramps, in both legs! I finally yelped, got up, tried to walk them off, got back in bed, & the DOG started barking at a cat on our back fence! So I jumped up again, ran outdoors, threw on a shirt, dragged her happy butt in the house, & I couldn't go back to sleep! And I take melatonin to sleep!
I have to have my Husband disconnect the "brace" attached between the fence post & our house, so when the night owls next door, feel like trapesing through the common walkway in the middle of the night, the gate won't slam & re-verberate the whole dang bedroom wall! Right outside the bedroom window! Now I CAN'T move the bedroom, or even the bed! It shook so hard last night, that a little shadow box I have on the wall with a little music box on it, started PLAYING! Jumpin' Jehosaphat! What am I going to do? I've talked to the "kids" next door...thanked them for being more quiet, but I just dread nights! What next? And I like the "kids"....they all look like movie-stars, however many of them there ARE living there! Little brats!
They are renting....our friends the owners moved back to Monterey....And it is in their lease, to NOT cause trouble with the neighbors, or loud noise...etc! And I won't tattle either! But that noise wasn't as bad as chasing my dog around the picnic table at 3 a/m.....Sounds kind of funny, now...by the light of day! I KNOW what my Husband will do if taking the brace off fails....he'll just remove the gate! Doesn't sound like too bad of an idea to me!
And the Radiologist told me to ask the Oncologist for the Cyp2d6 test, for sure! Because you don't want to take Tamoxifen for 5 years, not knowing if it is metabolizing. I just didn't want to start with the Femara...I've heard about sooooo many side effects from that one. But I'll find out next month when I go see her!
So Okay, okay, more bananas for me!!!! Wasn't it me also that said I didn't have many side effects? I shouldn't have said that. Oh well....Maybe the neighbors, leg-cramps & our little dog will leave me alone tonight so I can actually get some sleep! xoxoxoxoxo
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Chevyboy- Oh that picture of the cat on the fence cracks me up! I sleep with ear plugs in. The type they give you in the mri....I keep every pair I get and they have sure come in handy! The birds here start chirping at 4:30 a.m. or some ungodly hour. Now I don't hear a thing. Sleeping like a baby since I started using the plugs! My oncologist told me that only 8 % of women do not metabolize Tamoxifen so it's a pretty slim chance that any of us won't but he ran the test on me anyways. I was not in the 8%. Maybe today you can take a cat nap?! I hope so. Cancer is bad enough to deal with. I think lack of sleep may be right up there with cancer! Hang in there!0
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Well, I went out with screw-driver in hand, & took out the two 12 foot long screws
holding the post close to the house! It was braced, because the heavy gate was dragging on t'other end! When I took the screws out, the post popped out at least 1 1/2 inches! I don't CARE if it drags! We never even use the darn thing! It was our idea for the "gate' between the houses anyway, just for both houses to have privacy...So they anchored it to our house...That was GREAT until the "kids" romp through there at all hours of the night....So we'll see tonight! Next.....the gate comes off!Koryn....it WAS kind of funny with Lacee & the cat...She was just-a-barkin' (the Sheltie that she is) & the cat was trying to hold her footing, on top of the fence, TRYing to jump off somewhere, & hopefully NOT where noisy dog is...Ha! But I just threw on my shirt, & ran out in my panties, no socks...TRYing to keep the dog quiet & not wake the neighbors (who don't go to bed anyway) !! I surely must have been on Candid Camera I'm thinkin'! And when the music box started playing after the gate slam, you just had to smile! EAR PLUGS!!!!!! I have them! That's what I can do! Now to see if that helps the bedroom wall stabilization problem.
Okay....I'll ask the onco about the test....hopefully I can stay on the T pill! Thanks!0 -
Tamoxifen is known to cause phlebitis (blood clots in the legs) so be sure the cramps are not clots. My internist's wife got phlebitis on Tamoxifen. He switched her to progesterone.
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Chevyboyyou had one hell of a night last night for sure!!!! I must say I laughed quite a bit at ALL you had gone through you poor thing....... I went out last night and got 3mg of melatonin and slept like a baby but have felt groggy and sick all morning.....so I don't think I will be doing that again anytime soon. I will stick to the benedryl and just take it every 3-4 days when I am exhausted......I hate the thought of always having sleepless nights when my job is I run a daycare and I am working from 7:15-5:00 everyday and I have my 2 little love bugs too to deal with and I don't want to be psycho mom either......OH WELL! I am very sensitive to ANY kind of medications and this Thursday will be 3 weeks completed on Tamox and no SE yet except the sleepless nights which my doc says is not a SE.........I know someone else just said they had no SE then wham-mo......I hope I didn't jinx myself too soon.......OOPS!!!
Well today is a lousy cloudy and rainy day here and looking forward to tomorrow when it should be bright and sunny in the 70's.....nice chatting with you ladies!
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Chevyboy: dying to hear tomorrow's update on your tale of the gate.
I say this video link posted on another thread and thought all of you might be interested. It was a talk given at a TED conference in Feb by William Li, MD, President and Medical Director of the Angiogenesis Foundation. The talk (about 20 mins) is titled Can we eat to starve cancer?
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Hi,
Not sure if this is the best thread to post on but maybe someone could redirect me to a better one if I am on the wrong thread. I am considering refusing tamox. I have been on it 2 months and my personality is totally changed. I am very hung strung and have zero patience for anything.... I am chalking it up to tamox. but maybe it's post treatment stuff I am going through....
Just wondering if anyone has done thi said forget the tamox and moved on. I am 39 years old and premenapausal. I am getting periods still on tamox.
Thanks,
Chalex
Diagnosis: Aug/09, Stage 2 (b), 7 cm tumour, Grade 3, 0/15 nodes, ER+/PR+ HER+
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Chalex-
I totally understand your feelings. I have heard that Tamoxifen changed the personalities of some women. It's certainly not for everybody! You'd want to sit down with your oncologist and discuss options at this point. There is a thread forum onthis site for women who have gone to natural, alternative and complimentary practices. You might want to check that one out.
Good luck to you!
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Gulp, Good luck to you on your surgery tomorrow!! I'll be sending lots of good thoughts your way for a successful (but uneventful) surgery and a very swift recovery! Is this an exchange for you too?
Chevyboy, Sorry you had a terrible night but thanks for the laugh! I'm just picturing you in your undies and night shirt running around outside. Tee-hee! And then the music box. Too funny!! I hope you get better sleep tonight though...its really not nice not to sleep. I second the comment about earplugs - my husband snores and I pop them in and it helps a lot. Definitely recommended.
I can't seem to locate the specific Q's people have recently posted about foods/drugs possibly interfering with tamox so I'm just going to summarize what I've found in my research on this subject. I encourage everyone to confirm for themselves, and I'll give my sources so you can see where I'm getting info:
grapefruit: specifically told not to eat this while on tamox (source: tamox package insert). Interestingly, grapefruit interferes with absorption and function of some drugs, but enhances others, so its just generally advised against so that docs don't have to worry about you getting less or more than prescribed (e.g., see http://psa-rising.com/eatingwell/citrus_effects.html)
other citrus fruits besides grapefruit: eating the actual fruits appears to be ok. using a lot of citrus oils might not be advisable because these are extracts from the peels, and that's where the possibly suspect compound tangeretin is found (see next item for source).
tangeretin: a compound found mostly in the peel of some citrus fruits (tangerines, oranges, perhaps others); animal studies have implicated this to interfere with tamoxifen's good effect agst breast cancer. The doses needed to get the problem were HUGE, and you couldn't eat enough of the fruit flesh to get that dose. But, tangeretin is found in such doses in some supplements, and its suggested women on tamoxifen NOT take such supplements. It would also be more concentrated in citrus oils, so it might be prudent to avoid their use too. See my post on p. 252 of this thread (April 27) expressly about citrus and tangeretin for more info and sources.
benedryl: this is known to be a moderate inhibitor of the cyp2d6 enzyme that's needed for tamoxifen metabolism and most docs are now recommending against using it simultaneously with tamox. See the BCO page on tamoxifen at http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp for a description of why and all the common meds incl many antidepressants to avoid while on tamox. At least some studies have shown that patients taking inhibitors of cyp2d6 enzymes and tamoxifen had worse BC outcomes than those on tamox alone (e.g., see http://www.ncbi.nlm.nih.gov/pubmed/20142325). Most docs are now recommending tamoxi-babes do not take benedryl and other complete or moderate inhibitors of cyp2d6 enzyme.
calcium: found nothing to implicate interference (found nothing at all, actually...so no sources)
vitamin C (finally looked this one up!): found nothing to implicate interference there's some data suggesting that vit C helps keep down hypertriglyceridemia caused by tamoxifen, which would be a good thing (source: http://www.ncbi.nlm.nih.gov/pubmed/10766415)
Flaxseed and flaxseed lignins: Lignins are the type of phytoestrogen in flaxseeds (and some other foods). All data I could find said that flaxseed and its lignins did not interfere with tamoxifen and had anti-cancer properties of itself. See my post on p. 242 of this thread (dated Mar 23) with sources there.
Soy and its phytoestrogens: I can't get a good read on soy, as to whether it does or doesn't interfere with tamox, and whether it is or isn't good for BC. The data are mixed. Again see my post on p. 242/Mar 23 for some info on that.
An important thing to note is that there's sometimes a contradiction between something having anti-cancer properties, but also interfering with tamoxifen's anti-cancer properties. So as you research stuff, be sure to distinguish between what property is being claimed or demonstrated for a food or compound.
Gotta stop typing...shoulder hurting...can't wait to see that TED thing you posted Mary. I used to do research on angiogenesis and still find the topic fascinating.
Hope everyone's having a good day. I think it's naptie for me.
CS
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Update on the gate!!!!!! It's GONE!!!
It's now in the back yard, out of sight! I talked my husband into removing it completely! Just took out the 2 pins, like on your doors, & we lugged it through the house, & out to it's resting place! And I ate 2 bananas today, to help with the leg cramps! Music box is still on the shadow box...but my collection of little "bells" on the top shelf were just hanging on the edge, by their toe-nails! They almost got shook off! Damn gate! Now I am happy! I keep clothes on the foot of the bed, in case of emergency run-around-the-table during the night! Ha! And Chalex....You probably don't "have" to take Tamoxifen, but be sure you talk to your Oncologist about that! It's always your choice...& I'm so sorry you are having those side effects! I don't have THAT one.....yet......but let us know what you decide!
7777...I LOVE that you posted those links here! I print out a lot, because it's just hard to remember all the stuff I want to! And Melatonin.....I read somewhere where taking it, also helps in treating any cancer cells..... Something about the "lining" ......Just Google it, with Tamoxifen.........You will find it!
MaryN....thanks for that link also! I just love this site...for all the information, AND hanging out with all you gals! Love you all! xoxoxoxoxo
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cs7777: Thanks for the concise scoop on everything in one place! It might be a good idea to make a seperate thread where you "cut and paste" that and can get it marked by the moderators so it is always at the top and call it "what NOT to take while on Tamox".
Chevyboy: I personally sleep with a fan running all night long every night for "white noise" to block out outside noises. We lost our last dog a few years ago so I don't have to worry about them hearing it either. I hope you get a better night's rest tonight!
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Chalex, in looking at your diagnosis.. a 7 cm grade 3 tumor. I would want to take something to help aid against recurrance. But that is just my opinion. By all means if the tamoxifen is making you miserable you surely cannot compromise quality of life. BUT ~ I would ask your oncologist about a possible alternative.
CS ~ thank you for all of that great info. I will have to question my oncologist on the benadryl yet again. In the meantime I am not taking it.
Chevyboy ~ you make me laugh with your posts !!! So glad the gate is gone. Hoping you get some good sleep !!!!
Have a good day all !
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Hi Gals.....took my Husband for his Cardiologist 6 mo. check-up for his pacemaker....He has to have it replaced NOW! Damn! We thought it would be November! We are going to Orlando on June 2nd...& they said it won't wait...
I know I guess it's better to do it now...& I won't tell him, but I am just so scared! I am more afraid of this, than when I had my breast cancer surgery. I look at him, & I just feel sad. It is supposed to be very simple...& not for over-night even, but they have to put him on an artificial heart while they are switching the pacemakers & connecting the leads. This pacemaker has been in for 8 years this month, & the "battery is in the red!" So we are going Monday morning. I would rather be worrying about the "gate"....Ha! By the way, I slept through the whole night! No leg cramps, noise or Nothin'! So I better go do something.....Hugs guys! xoxoxoxo
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HI LADIES
Just wondering if there is room here for one more ,ive just started taking Tamoxifen 3 days ago ive noticed a few familiar faces
JOJO
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Hi JOJO, nice to see you over here!
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