Bottle o Tamoxifen
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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.
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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!
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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!
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..and I've never even heard of coconut flour until now! I haven't had pancakes in years!
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Sloan I have seen coconut flour at Costco here in Canada
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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!
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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.0 -
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.0 -
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!! ♡Kim0 -
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
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Before Tamoxifen, my perimenopause featured cold flashes--it would be 85F and I'd be shivering under a fleece blanket.
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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.
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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.
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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.
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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?
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Claire: What does your doctor say?
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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!
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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.
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Thank you - yup, my plan starting tomorrow is to try and slowly get back into my exercise routine. I have always gotten up at 4am, worked out for one hour, then showered and started the day to have my children up by 5:40, lunches made, breakfast on table and off we go at 7am. My husband works out of state so has to leave really early too. As my radiation just ended and there is NO WAY this body can put on a bra, I am going to have to go slow, no bouncing...even if just marching in place. I do mostly Leslie Sansone walk at home so I'll do what I can. Let's hope it goes well!! When my breast and skin heal, and I can put a bra back on, then we'll see what comes next.
Thanks for all your support - I agree with Suzanne50..exercise just makes me feel better and I'm tired of not feeling better. Good night all
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I'm glad I am NOT the only one with the chills. seriously, what's with that. By the time I drink something hot? Hot Flashes!
& all the talks about different diets! I mainly just eating more green & whole grains, brown rice instead of white (that's big change for parents), sweet potato, berries... & it seems we've been eating lots of mushrooms - shitaki, porchini, all different kinds my mom finds at the Asian market. Less meat, & we started going to the middle-eastern market, where the meat are certified kosher & Halal, no hormone/ GMO (they sell lots of EU import).
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Mom: I am so sorry you are having a hard time. It sounds like you are a supermom and it must be so hard coping with not being able to do as much. I am not a supermom (although I try) but I know working out has become so much more important to me. I wear two bras to work out now, one regular and one sports bra over it. The bouncing is very uncomfortable for me even though my breasts are only a B.
I am wondering if the hot flashes from Tamoxifen last the entire time you are on it or just in the beginning? Anyone have any thoughts? I am guessing most on this thread are in the early stages. I would love to hear from anyone who has been on hormone blockers for a long time.
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Good Morning Superius
My mom bought me a heated throw for Chanukah. I have not used it and thought to return it but, last night, plugged it in under my covers in bed - it worked GREAT! of course, I woke up about an hour later to use the bathroom but was warm and able to turn it off (was worried about having it on all night) - Can you try that? I did get up at 4am and did a very modified workout but it is a start. Put my pedometer back on and trying so hard to get back on track. I am also trying acupuncture for the first time through our cancer center - it is 10 sessions (every Thursday) at no charge. I am a bit skeptical and nervous but, figure it is worth a shot - I do not eat meat..not a vegetarian but dont really care for it so thats not a problem. I have always been a healthy eater but slip every now and then. Plus, my husband is a true carnivore so can be tough. I tend to make one meal for my family and another for me but, thats okay. I grew up keeping strictly kosher (not now) so have always only had kosher meat so hear you. Happy new Year
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Hi
Thanks! You made me smile - not a supermom but I try:-) haha
I have read and heard that the side effects do get better with time - hope so for you. The two bras sounds like a great idea but I am so raw and have open sores so no bra is touching this body at all - it will heal. As my grandma always told me, this too shall pass.
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Trvler,
My doctor wants me to increase my water intake, plus up my Vitamin D regime, because I am deficient. I am going to try and start exercising, but my upcoming shoulder surgery will impede that (I have a nice partial rotator cuff tear, and bursitis/arthritis in my right shoulder). When I turned 40 and they asked me if I wanted the "extended warranty" on my body, I should have taken it, lol.
God bless you all,
Claire (happily married to Jamie Fraser)
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I'm one of the ones who found a great deal of benefit from yoga. Before BC I had never exercised at all much less something as "stupid" as yoga. I wasn't overweight per se but felt I could stand to lose 10 pounds. So in the year before BC I did Weight Watchers and lost 20 pounds then voila! BC! Once I got through surgeries, I found a cancer program at the gym. They helped me with learning to exercise properly and taught me how to do yoga. Now I go to the gym every day and do yoga as often as I can which is usually 2-3 times a week. Some days I just go to the pool and float around using my arms so I keep my ROM good. This same program showed me how much myofascial release therapy can help with pain and ROM and even the benefits of acupuncture. I went to visit my family for Christmas for a week and didn't exercise or go to yoga and could really tell a difference by the time I got back. I wish doctors prescribed yoga/exercise for BC patients. I'm also one of those slightly anxious sorts and can really go to dark places when I have pains and yoga has helped tremendously with that as well.
Now as to dieting (which I am not good at at all!) I'm reading all this info on Wheat Belly diet and such. What can a person do who hates (really hates) to cook? I don't eat alot but I also don't eat the best stuff. I travel alot and find that I'm usually somewhere in my car when it's time to eat. What are your suggestions if a restaurant (or fast food place) is your only choice for a meal? I usually like a bowl of oatmeal or an egg for breakfast and a cup of yogurt with some fruit or nuts for dinner. Lunch is my issue.
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Lala: I am interested in hearing more about your yoga. I have been doing jazzercise for 3 years now and I stepped up my workouts a lot when I was diagnosed. Working out got me through treatment but because I have scoliosis, my shoulder is very tight. Adding on surgery and radiation, I think I need a lot more stretching than Jazzercise is giving me. I am doing physical therapy now.
Claire: My jazzercise instructor just had that same surgery two weeks ago. I understand the recovery can take a while.
When I first had my port installed, I got a blood clot in my heart. I was injecting blood thinners but I asked the heart doctor if I was ok to work out. He said yes. But my MO told me to walk. Number one. I hate walking. And why would you tell someone to lower their workouts? It really made me mad. If the heart doctor said it was ok, why on earth would she advise me not to? I just got the feeling that was her canned speech to everyone, to walk, because let's face it. Most people don't exercise. So telling someone who already does to ease off it for no good reason just made no sense to me.
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Trvler--I do Hatha yoga for the most part but now I'm at a gym that is very limited in the classes offered. They call it yoga stretch and that's pretty much what it is. I'm 52 and one of the youngest in my class but for me it's exactly what I need. I get on the treadmill for cardio and also lift weights but this stretch class really helps with my shoulder and rib pain that I got after mx. One of the things that a lot of us develop is scar tissue where our drains were. This builds up along the rib cage. I found a girl who does myofascial release therapy which, combined with yoga, gave me a great deal of relief. She's become so interested in my case that she's learned to do cupping which she does for a few minutes each visit. I have a lumpy area right where my underwire would rest. All my docs just shrug and say it's part of the recon and I'll always have it. My girl's cupping has actually flattened it a bit. It gets a little painful when wearing an underwire (which I can't since mx) but since she has improved it, I can wear an underwire for a few hours at a time. I live in a small town now so my resources are somewhat limited but in the summer I go to a larger city for 3 months and that's where I've found most of my help like massage and good yoga classes. If you can find these resources, they will help alot with recovery. And physical therapy was the biggest help in the beginning. I just think it has to be someone who knows how to work with BC patients.
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That myofascial release therapy sounds interesting. I have firmness at the bottom of my breasts. Maybe I should look into that, too?
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lala1, I'm finding restaurants are starting to offer foods that are low carb. For instance, my favorite sandwich shop is Jimmy John's, and you can order an unwich instead of a sandwich. That just means it is wrapped in lettuce instead of put onto bread. I'm told some other places do this too, I think it was Red Robin. I have a coworker who just orders a hamburger and gets a plastic fork, he removes the bread and eats it with a fork. Another option is a salad with chicken on it.
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Trvler---I went in today to get my monthly waxing done (armpits are difficult to shave with node removal so I just wax every once in a while) and while there started talking with the girl about how her child was doing who contracted an infection in the hospital and had to have drains put into his legs. He's mostly recovered now but this got us talking about drains. I mentioned how much I loved the myofascial release massage for the scar tissue from the drains and that her child might like it. Turns out she's trained in it! I had no idea. I'm in a small town and just figured no one knew how to do it. So I'm going to give her a try. She said it would really help with my lumpy scars so might help with your firmness.
ORgal--thanks for the suggestions. I'm a huge bread fan so this will be difficult for me! And I figured salads wouldn't be good cause of the fattening dressing but I guess that's still better than bread.
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