Bottle 'o Tamoxifen

Trvler

I am on day 4 and so far, I don't see any change. (Only 3,646 more pills to take). I did feel a bit queasy in the middle of the night last night. Is that a SE? Hot flashes are the same as before so far. For me, the most annoying part of the hot flash is that I get really cold, pile on blankets and then get hot. I feel like I have been sweating but it is not keeping me awake. The cold is bother me more. Anyone else getting cold flashes?

Sloan15

Trvler - I get nauseated in the middle of the night, too, but I also got that --and the hot cold hot cold-- as premenopausal symptoms. So for me, I'm not having any new SE. Yay.

lala1

chrissie29--I'm one of those who started having sinus issues about a year after starting Tamoxifen. I've spent the last 2 years trying to figure out what the problem is and how to fix it. Last June, my ENT threw his hands up (he insists I have allergies although testing showed any I had were mild) and gave me a really strong antibiotic. Finally! Relief! This last until Oct when I caught a cold then right back where I was before. All my cold symptoms finally disappeared except for a pain in my head my nose and eye that I would get whenever I bent over. Then in Nov suddenly I developed a high pitched whistle in one ear. All of these things point to sinuses which I'm convinced is a chronic sinus infection, but no one wants to try any more antibiotics. Then on Christmas Day I caught another cold. (Before Tamoxifen I haven't had a cold in 15 years. Now I've had half a dozen over the last 2 winters.) The next day my mom went out and bought a supplement on the advice of a friend. It's called Source Naturals Wellness Formula. My cold (and it was a doozy) was gone in 5 days and best of all the pain behind my eye when bending over is gone! I do still have the whistling noise but it seems to be lessening so I've got my fingers crossed. This Wellness Formula get some rave reviews. My DH started to get a cold the other day so I hit him hard with the big dose and he was fine the next day. Anyway, just a thought that might help you with the sinuses. I hear Tamoxifen can aggravate sinus issues if you have them. I didn't have them before BC so just my luck it would cause them!

CarolynAnne--Not sure if you're aware of this but melatonin can have the opposite effect in too high of a dose. My holistic doc put me on it after Tamoxifen started messing with my sleep. He started me on the lowest dose possible which is 0.3mg which I bought from Amazon. It took about a week for it to kick in and I took it for about 6 months. Then once my sleep was regulated I weaned off because he said people shouldn't take it for long periods of time. I've never needed it since. Now that I have my Tamoxifen-caused muscle/joint pain under control, I sleep like a baby!

Wendy3

I was told by my naturopath to cut out all red meat out of my diet along with sugar. Very bad stuff for breast cancer patients promotes growth. So I think I will avoid all the meat and stick to the veggies. 

Suzanne50

My goals for the new year is to improve the diet. It isn't really too off track but there is always room for improvement. So I am cutting out sugar for 30 days (it's a start!) and no red meat (I don't really eat that much of it anyway). Focusing on eating a clean diet - no processed foods...making my own salad dressing, etc. It really is a great way to eat regardless of cancer.

I am on Day 4 of Tamoxifen. Can't say I feel any different but it is a bit early to tell.

Trvler

Suzanne, we are Tamoxifen twins. lol

solfeo

Hi CarolynAnne - You can read about the ketogenic diet online. The basics are that it is high fat, moderate protein and low carb to the point that you want to stay in a state of ketosis. It was originally used to control epilepsy in children and there is a long history of it working for that purpose. Like everything related to breast cancer there is some controversy about whether it helps cancer or not, but all I can do is share my personal experience, which is that I've lost a ton of weight, my blood pressure, blood work and energy level are great, and I'm healthier now than I have ever been.

There are a lot of misconceptions out there, such as that a ketogenic diet is high protein. It is not. You eat moderate, adequate levels of protein for bodily functions and tissue repair, and no more, because too much protein will raise insulin levels (not everyone knows this but it is true). That's what we're trying to avoid. That's going to be a different amount of protein for different people. There are various calculators available online based on body weight, but you want to calculate based on your lean body mass only. I eat in the neighborhood of 60 grams of protein per day.

My modifications for ER+ cancer are that I do not eat dairy except for a very small amount (more like condiment-size) of sheep and goat cheese, and only occasionally. I do not limit healthy fat, such as olive oil, coconut oil, avocados, etc., but I don't eat extra fat on purpose just to reach the suggested 70-80% of fat recommended on keto. Whatever amount of healthy fat I need to make what I'm eating without skimping works out well. I only eat hormone free meat (organic and grass fed when I can get it), and do limit the amount of animal fat I get, but I don't eliminate it completely. I eat one egg per day as a rule, but sometimes I'll have more. No added sugar. No wheat, gluten or grains (every once in awhile I'll have a very small amount of rice). I do not limit the amount of vegetables I eat, except for starchy vegetables, which I don't eat much at all. I will have a little sweet potato every once in awhile, but no white potatoes, corn, etc. I don't usually eat full servings of beans and lentils, but I do enjoy them in small amounts added to soups and stews.

Besides staying in ketosis, what I want is to keep my blood sugar steady to the point that it doesn't even vary before and after meals (mine usually stays around 75 at all times). That takes a different amount of effort by different people, but for me I've got the process down after testing my blood sugar before and after meals for a month to see what my body reacts to. I've also figured out how to eat some healthy high glycemic vegetables I don't want to have to give up (like beets), by tweaking the amount I eat and the amount of healthy fat and fiber I eat with them. It's like your own personal lab experiment because everyone is different. But it can be done, and it's not really that hard once you get past the withdrawal/detox. I never feel deprived and I never crave carbs or sugar. I don't have to count calories, or even carbs now that I know what I can eat.

I adapted my Thanksgiving meal to my diet, and not only did my family not notice the difference, but I lost a pound Thanksgiving day. This isn't strictly keto, with more carbs than you would want to usually eat in a single meal, but I still stayed under my carb limit for the day and lost weight. Everything is homemade, from scratch, all natural and with no sugar added. I dare anyone to say I deprive myself! LOL

I could go on forever with the tips, so if you have any questions just ask, here or you can PM if you want. What I won't do is get into a contentious debate with anyone about whether my diet is healthy or not. That's already been settled by my personal experience, my doctor's blessing, and proven by my medical tests and the fact that I got into some clothes this morning that I haven't been able to wear since 2008. My labs don't just look good for a fat person - my numbers are healthy for anyone

Sloan15

CarolynAnne and Suzanne - Please keep on sharing! This is good stuff! I'll look into those ketogenic strips you mention if I struggle to lose this weight. I think I'm a mindless eater sometimes, so saying no to chips, croutons, or bread when I go out to dinner is a no-brainier for me. I know some people eat a lot of protein, but I don't like to touch meat, so I don't cook it. So, protein is a problem for me. My prior source of protein came mostly from beans and a grain to make it complete, but I don't drop weight when I eat those (probably because they'd light up those strips you talk about!!). I eat fish, and I had to start adding hormone-free chicken to my diet because I needed more protein to keep from being hungry. I don't eat red meat, and I, too, am cutting out sugar completely! Yes, this is a great start!

solfeo

Sometimes I struggle getting enough protein myself, because I try to limit animal protein and animal fat and a lot of the plant proteins in adequate amounts are higher carb. No soy, etc. I think the main thing is that if you have to eat meat for protein, eat only as much as your body needs, and try to get it hormone-free, antibiotic-free, with no GMOs in the feed, and beef should be grass-fed. Everyone is not the same though. Some people with cancer do really well juicing, but I gain weight juicing, and since the weight loss is my top priority at this juncture, that's where I need to begin. Might revisit juicing when I'm down to a normal weight and see how I do.

What got me started losing weight before the cancer was a program called the Wheat Belly diet, which is lower carb but not ketogenic, also grain free, sugar-free and some other stuff-free. I had lost 40 lbs on that alone, but at the time I was diagnosed I had gained a lot of it back. Not the diet's fault, I was drinking too much wine during a stressful period in my life (the cancer probably loved that). I was still down about 18 lbs from my highest weight when I was diagnosed. Then losing the weight became a necessity, and my naturopath suggested ketogenic for the cancer. It wasn't that big of a jump from what I was already doing because I was already off the grains (that's the hard part in my opinion, and most people probably struggle with sugar as well, but I never had a sweet tooth - those cravings leave after a couple of weeks on the diet). Here's a link to a quick and dirty version of the Wheat Belly diet. It would be a good way to start for anyone who doesn't think they can manage the strictness of a modified keto diet right off the bat, and you get all the benefits of eliminating sugar and grains:

Wheat Belly Quick and Dirty

He's an MD - a cardiologist. His blog and his book Wheat Belly Total Health (Amazon has it) have a lot of really good information about why the diet works and why grains are not as good for humans as we have been led to believe, and the science behind it. He also has probably hundreds of testimonials from people who have regained their health following his program, with pictures and sometimes lab work before and after. It's amazing how many chronic health conditions have been eliminated with this diet. People are able to stop taking meds they have been on for years (of course you should never do that without the OK from your doctor).

Edited to add: You'll note he allows some dairy and doesn't limit saturated fat. That's apparently not a concern for most people, because their blood lipid profiles and chronic illnesses improve even without eliminating those items (fat isn't the problem, it's grains and starchy and junk carbs). But I think women with breast cancer are better safe than sorry when it comes to dairy and animal fat, so I do personally limit them. I believe studies conflict, like they always do.

chrissie29

Lala1 - thanks for the info. I have found that antibiotics I was on after my exchange surgery helped as well, but the headache and pain has been worse this weekend after I had a cold at the end of last week. I will have to check out the supplement.

Diet-I lost 20 pounds during treatment by following the diabetic diet I was given when I had gestational diabetes. I would eat 3 carb servings for breakfast and 4 carb servings for lunch and supper. I have a morning, afternoon, and evening snack that includes 1 carb serving each and sometimes some protein. I eat every 2-3 hours to try to keep my blood sugar stable. I also cut out red meat and sugar and count carbs. I eat salad with every meal to fill me up.

Wendy3

Solfeo I'm officially impressed wow you have it down have heard of this but you have explained it perfectly Thank you. Will give it a go.

solfeo

Thanks Wendy! For anyone giving it a try, please do read more about it because there are so many details I can't include here without writing a book. For instance, while you're actively losing weight on a ketogenic diet there can be temporary changes in your blood work, that if your doctor isn't educated about, could cause her to assume you have issues that you don't really have. Like I said, it would take too long to explain everything, but the information is out there. Good luck to everyone no matter which path to health you choose. I'm sure there is always more than one good way to do everything.

keepwalking

Hi Ladies - Great discussions on diet! I'll just jump in with a bit of my experience, which has helped in the areas of weight and also sinus issues. About 2 years ago I discovered that gastrointestinal, sinus, migraine, and neurological issues that I had for a long time were linked to gluten sensitive enteropathy. I, of course, needed to eliminate gluten-containing grains. But I also discovered that long-term gut damage caused me to lose the ability to digest complex carbs (starches, table sugar, lactose). So, for the last year or so I have been on a diet that also eliminates all grains, starches, starchy vegetables, sugar (except for very small amounts of honey and limited fruits), and lactose. I ate as much as I wanted and lost weight to the point that doctors are more focused on me keeping my weight up! My blood glucose and triglycerides fell to fantastic levels (was borderline diabetic before). My ratios on lipids became excellent (although actual cholesterol numbers rose a bit - still within the guidelines of natural foods advocates, although above Am. Heart Association propaganda). I feel much, much better all over, migraines are greatly diminished, and the sinus pain and pressure that were chronic for me has become just an occasional thing (and I can usually associate it with eating too much fruit). My energy levels are greatly improved, and joint/bone pain are much less.

I didn't want to mention my diet before, because in my case it was initiated for medical, rather than weight loss, reasons. But it seems I eat similarly to Solfeo, although I don't think I am in the ketogenic range anymore (I was at first, when I couldn't tolerate even smaller amounts of carbs). I was dairy-free for a lot of my life due to lactose intolerance, but after finding I had osteoporosis (also a SE of celiac disease), I have been making my own yogurt, which is cultured for 24 hours to digest almost all of the lactose. I eat quite a bit of that, and some natural cheeses, along with lactose-free milk in hot drinks only. For the rest of my protein I eat fish (focus on salmon, tuna) and some chicken. Very little red meat - only lamb once every few weeks. I use good fats (olive, coconut, avocadoes) liberally, and eat a variety of nuts and seeds every day. The bulk of my diet is cooked and raw veggies. I make breads, pancakes, and "cookies" from coconut flour.

I love this group and how we can help each other to stay healthy!

Sloan15

solfeo - Thanks for the Wheatbelly info! I looked at your link and some of the recipes, and I think I'll order the book. Eggplant pizza, macaroons, and the bacon chicken recipe (!) sound great! It's hard when a diet seems like a diet.... You are such a great resource. Is the ketogenic diet really strict? I travel a lot and don't want to anguish over my food choices or have to always be focused on food. That's what I'm trying to get away from! I try to eat healthily, but part of international travel is to experience the cuisine. There are always healthy choices, but how long did it take you to find what you can and cannot eat?

Keepwalking - it seems that a lot of these diets (ways of eating) are similar, so I agree, there are probably many paths to good health as they all talk about eliminating sugar and flours. It's so interesting that fat has come back on the scene as good. remember when docs wanted people to cut fat? I think even then, though, people went overboard cutting all fat including olive oil. I have a question for you. I make my own yogurt, too, using 1% organic milk for 11 hours of "cooking." You mention you culture yours for 24 hours. Do you just do it for a longer period of time to use up the milk sugar? Is it still cultured at 100 degrees like my yogurt heater makes it? Glad to hear your health improved!

Sloan15

..and I've never even heard of coconut flour until now! I haven't had pancakes in years!

DeeRatz

Sloan I have seen coconut flour at Costco here in Canada

Sloan15

I've only seen almond flour. (...and at Costco, wow!)

By the way, I tried the brussel sprouts with ham pieces and an over-easy egg for breakfast from the wheat belly diet link. It was delicious!

solfeo

I have seen Wheat Belly described as borderline ketogenic, because it has all of the elements, but you do have to watch some of those elements more closely for a ketogenic effect. Like not eating too much protein, and keeping carbs low enough for ketosis. In that respect it is more strict. You don't have to be in ketosis to lose weight and improve your health, though. I'm keto because I hope there might be added benefits for the cancer. It hasn't been proven but my ND thinks so and I agree with his logic, so I think it's worth trying. But even without being done in a ketogenic way, the Wheat Belly lifestyle does reduce inflammation in the body in a big way, which is going to reduce risk of cancer recurrence. So I think there is some leeway in deciding how strict you want to be.

The hardest part about eating out when you are gluten free is that there is wheat and hidden gluten in practically everything. According to Dr. Davis (WB author), you have to eliminate it completely, and be militant about it - you don't get 95% of the benefits by eliminating 95% of the wheat. It can be done eating out, but it's so much easier to make your own delicious food that complies with the plan. I love to cook and get a kick out of tweaking recipes to fit my way of eating.

Suzanne50

Trvler - we are buddies! We can compare notes! So far no problems here.

Great diet discussion! I am just focusing on "clean" eating and getting in shape. My weight is fine. My diet has been pretty good but always needs a tweak. It does take time and effort to make sure to always have healthy snacks available. I spent part of Sunday "meal planning" - it makes a big difference knowing that I have all my healthy meals and snacks all planned. I am less likely to reach for something I shouldn't. I have been 5 days eating clean, no sugar and have to say I feel pretty good. I will check out the wheat belly link - I do think we eat too much wheat/bread/pasta as a society. I have so many friends with all sorts of health issues that could probably be relieved by dropping pounds and making better choices.

keepwalking

Sloan - For the yogurt I make it the same as usual, culture at 100 - 105 degrees, but just let it go for about 24 hours. This is the procedure for the SCD diet (which is a diet for Celiac, Crohn's, IBS, etc. which eliminates grains and complex carbs for those who have lost the ability to digest them properly). I am assuming that tests were performed to determine that 24 hrs was the optimum for making sure the fermentation organisms digested all (or almost all) of the lactose.
I use Bob's Red Mill coconut flour. I have also made wonderful muffins, breads, pancakes, etc. using almond flour, but I sort of overdid it and right now I am doing better with coconut flour. I use much less than the amount of honey called for in recipes so that the carbs are lower and they still taste great to me.

goldenpawsKim

thanks, ladies, for all the wonderful advice on ways to eat better. Since being diagnosed last October (2014) and being on tamoxifen for over 6 months, I gained 15 lbs. NEVER in my life did I have a weight problem. So depressing I'll look this info over and give it a try. Thnx again!! ♡Kim

MomOfTwins98

Hello Trvler

Sooo happy to find your post - thought I was going crazy with the COLD at night - then sweating. I also count how many pills I have left! I feel a bit queasy in the middle of the night too but that usually passes. I was, and still am, 49 at diagnosis and never had a hot flash before. I finished radiation on Monday of this week and I am very sore and having lots of trouble with my legs - a whole group of Drs and tests and so far, nothing. But...it made me smile to see that someone else piles on blankets at night, freezing and cold, and then gets hot. The cold definitely bothers me more. My daughter put a second down comforter on me last night, over two other blankets, fleece pjs, and socks and I was shaking. About one hour later, warm! I started Tamoxifin on November 30 and radiation on November 23 so was all at once...I was so worried the Tamoxifin was not working as I read that, if you do not have hot flashes, its not being absorbed. My MO said that's "so old news" and not true and insisted it is working. Guess I have to take it on faith. Since I have such other pains in my legs and groin, which started after a breast infection after re-excision, I also take Gabapentin and was told that may be stopping the hot flashes. Have only been taking 100 mg in morning and 200mg at night but after many many Drs, 5 MRIs, numerous blood tests/blood cultures, ultrasounds, etc., I saw a fabulous Rheumatologist early this morning - He thinks I may have regional myofascial issues and wants me to slowly up the gabapentin to 300mg 3x/day - seems like so much (from someone who only took tylenol prior to breast cancer) but he said it is okay and, if it helps my quality of life, will not cause any harm. So, going to try. He was a gem and spent a full hour with me, talking, listening, examining and knew all of my history before I walked in the door for our first visit today - he even saw me at 7:30am (he generally starts at 8:30) so I would not be late for work - so refreshing! Please let me know if the cold flashes get better! Was only 2 degrees this morning here but a bit warmer in the house!:-) so I know that's not it. Be well always

ksusan

Before Tamoxifen, my perimenopause featured cold flashes--it would be 85F and I'd be shivering under a fleece blanket.

Sloan15

Momoftwins - Wow, he sounds like a great doc! I, too, worry about medications, so what a comforting way to tell you it's okay to up the gabapentin.

Keepwalking - Thanks for the yogurt info! I'm going to to stay off milk products for 2 weeks before introducing them to my diet again. But, I'm definitely going to make the yogurt.

I'm 10 days into 40mg/day Tamoxifen. No noticeable SE yet. My doc is back fro vacation and said, yes, this is the amount for me. When I see him I'll ask about the study he's basing my megadose on.

ORgal

Thanks all for the talk about being cold. I went on a two week vacation to the Caribbean in November and ever since I came back I've been getting really, really cold - until I get a hot flash. I thought it was just me not adjusting to the colder weather here, but it's been almost two months now. I too am sometimes hoping for the hot flash to warm up. It seems unreal to get that cold.

Also, I started taking magnesium in October and it really, really helped the hot flashes....for about two months. Now they are coming back again. Ugh.

Since I'm writing, just wanted to mention I've also done a modified keto diet for a year and a half (started 9 months before diagnosis). I truly believe it has helped me get through treatments better and maintain my weight with no gain/loss since treatment. It took me a while to really get into it since I'm the world's pickiest eater, but have found even I can be satisfied on it, and believe I'm healthier because of it.

Trvler

I am not sure why but I am crazing carbs like crazy right now. Maybe because I am working out more? It was before the Tamoxifen so it isn't from that.

ClaireFraser

I've been on T since July of 2014. I took a break this summer, because of SEs... joint pain, hot flashes, etc. Long story short, I have been feeling lousy off and on for about a month: fatigue, joint pain, chills. Of course, I wanted to blame the T, but decided to have blood work done to rule out any underlying issues. The results came back fairly normal, no anemia, no infection. Could my symptoms be related solely to the T? Should I ask for further blood work... maybe it's autoimmune related.

I would love to go off of it completely, but thought maybe I should try changing my diet and add some exercise first. But in all honesty, I don't feel like doing anything. I'm so damn tired all the time. Suggestions?

Trvler

Claire: What does your doctor say?

MomOfTwins98

Hi

I have felt lousy too -extreme fatigue which I thought may be the radiation - I was started on Tamoxifin 7 days after starting radiation so hard to tell what causes which symptoms - After several different doctors for severe leg pains, swollen lymph node in groin, pain to even touch my skin on legs, I went through 3 varying MRIs, 2 blood cultures, fever higher (up to 101) and low (down to 96), chills and then hot, chest xray, echocardiogram, sinus xray, and the list goes on - craziness! I had always worked out daily and been in good health before all this. I have always struggled to maintain a healthy weight but did so but, over last two months, have lost weight without trying and no exercise - absolutely frustrating and upsetting and scary. Well, to answer your question, ended up with a rheumatologst today who does think it is an autoimune, myofascia issue caused by trauma to my body (had two surgeries for breast and then infection), stress, antibiotics for infection...then to top it off, in November I had another surgery for what I was told was a femoral hernia - that was the swollen lymph node in my groin. (which I still have) Woke up from surgery and no hernia...imagine? They have even tested me for lyme twice. I also had severe cording in my arm after lumpectomy/SNB and it took lots of PT to help me

I got so upset as I always cope well and just handled what came my way..scared, yes, but took a big breath, asked tons and tons of questions, and moved on with the next treatment. However, this Dr today told me that our bodies just take over and he is treating me for a myofascia/autoimmune/sort of like fibromyalgia. Having me take larger dose of gabapentin and told me to get exercising again and get moving..even if it hurts. Go slowly but keep going. I had stopped about one month ago after never missing a day for well over 12 years!

My MO feels confident that Tamoxifin is working and I need it to keep fighting - maybe try another Dr? another specialty? I know how hard it is to keep looking for answers and to be so darn tired!

Suzanne50

Momoftwins98 and ClareFrase - I am so sorry you are having such a hard time with tamoxifen. I did read somewhere that someone did find exercise to help with the joint pain - she was doing yoga and it helped her tremendously. I am not sure what thread it was on - maybe it was this one?? I read so many I get them mixed up. So perhaps making a small goal to start moving would be good to do.

I wish that after all we have been through, that we could at least be done when radiation, reconstruction surgeries are done. This taking a drug for 10 years really SUCKS!!! sorry....I just had to say. that.

I feel like I am finally climbing out of my exhaustion that I was in last month. Radiation. Holidays. Work. Kids. Life. ...I was plum tuckered. I feel like my battery is recharging slowly. I get up every morning at 5 and exercise for 30 minutes. Every day- no excuses. It makes me feel better.