VERY discouraged
Comments
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Purple - I was reading something the other day that said that "osteopenia" is a name that was made up by pharmacuetical companies to create a market for biophosphases. It said that they are using the data of young women and comparing it to pre and post-monopausal women. When you are younger you have more calcium in your bones and they are heavier because we need them to be for child bearing. When we no longer need the extra bone and calcium, the body naturaly sheds the unnnecessary bone and calcium. They said it is natural for some bone loss to occur, but "natural" doesn't require a "cure" and therefore they basically created a market for their product.
If you do not yet have osteoporosis, diet and exercise can keep it bay without the side effects of more drugs. I think I am going to try and stay on my AI and see if I can keep my osteoporosis where it is now - just over the line from osteopenia to osteoporosis - since I tolerate my AI well. I don't want to lose more bone, but I tolerate my current medication well and having to change to Tamox scares me. I had horrible side effects with Anastrazole and I don't want to risk having that experience with Tamox. If my next bone density shows a worsening I can change at that point. From what I've read Tamox actually increasies bone mass slightly, so likely I would gain back anything I may lose over the course of the year.
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Are you getting enough iodine in your diet? The main source is iodized salt. Arimidex can cause hypothyroidism so when I had symptoms I asked the doctor for a full thyroid panel. My TSH was normal so a routine TSH test showed nothing. When the full panel was done, I had a low Free T4. After 90 days on kelp supplements, a good source of iodine, my thyroid was normal. Goiter is a sign of low thyroid. Are you taking supplemental iodine?
Since iodine can be dangerous if taken in excess, I was careful to be tested and I stopped the supplement as soon as my thyroid returned to normal.
Sorry, if I sound like I'm bugging you. It's not my intent.
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Mini1
. I think I am going to try and stay on my AI and see if I can keep my osteoporosis where it is now - just over the line from osteopenia to osteoporosis - since I tolerate my AI well.
Good luck to you !
I am concerned after breaking three bones - it can be quite serious.From all I have read , arimidex accelerates bone loss by 7x the norm. Thats a lot.,
I wish you all the best, and I thank you for taking the time to write.
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The back building exercises are on here.
And the heel drops also called heel lifts are here.
Fitness Tips : Postural Exercises for Osteoporosis
A Simple Osteoporosis Prevention ExerciseThose who are older, frail or have already suffered a break should always consult their doctor and a fitness expert before commencing any exercises. The calcium, strontium and other bone building drugs or supplements are taken up by bone that's been stressed so we need to do jarring exercises in the areas most at risk, the hips, spine and wrist. Otherwise I suspect the calcium might be staying in the blood causing calcium deposits such as atherosclerosis. I believe supplements are pointless without some sort of exercise. Once menopause has started it's much harder to maintain or build bone strength so it's best to start as soon as possible and maintain for life.
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Thanks for posting Joy.
I lifted weights frequently before my LX. Right now, I am a little afraid of the risk of lymphedema and not so sure I should start up again. I am 10 weeks out.
Others ?
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notself
You are not bugging me at all.
'Goiter is a sign of low thyroid. '
Not in my case. I am close to but not quite, HYPERthyoid.
Because of extremenly low BP, I eat a ton of iodized salt on the advice of my cardio doc.
YOu said : "Arimidex can cause hypothyroidism " REALLY? I had not heard of this at all! It would be nice if the MOs mentioned the significant SEs
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Purple, There is no risk to the arms in heel drops or most spine exercises where the arms aren't used and they don't stress the heart and lungs. BC women become dragon boat racers by building their strength very slowly and it doesn't cause lymphedema if done carefully. If I remember correctly, those who already have lymphedema can help it with gentle exercise. I had a full axillary clearance on one side and sentinel node in the other so I'm very wary about lymphedema.
See what the Mayo clinic has to say about exercise and lymphedema.
Dragon Boats and Breast Cancer - Mayo ClinicI also have full blown osteoporosis though I'm too young to have breaks from it yet. I suspect there's more to fracture susceptibility than what they can see on the DXA scans as some with osteopenia have breaks and others with osteoporosis don't get any, despite being the same age.
I'm busy now, but will start a thread in the bones section about gentler exercise for those like me who can't or don't like to run or for others who can't do vigorous exercise.
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It's hard to keep up with the SE's since more are being reported all the time. The good news is not all SE's happen to every patient and if an SE becomes difficult to deal with one can change medication. I just switched from Arimidex to Aromasin. The pain in my muscles and joints has almost completely disappeared.
10 weeks out from surgery, you should be doing very gentle exercises and no weights. I started moving rock to build a rock garden when I was about 5 months from surgery. The rocks weighed about 5-10 lbs. I moved about 10 a day. Take it slow and as Joy said, exercise helps lymphedema. In my case it has kept it away.
You are in the most difficult part of this whole experience. You have your diagnosis and tons of information which may or may not apply to you. Just keep breathing and try to relax as much as possible as you wade through it all. Just because something works for me or someone else, doesn't mean it is ideal for you. You will figure out what works and you will find a "new normal".
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Well said Notself. I've been pruning and there's a lot to do so I time myself, gradually building up so I don't strain anything. If I miss a week or more then I cut back the time and build up again. I found just 15 minutes caused a burning sensation afterwards at first. They say to rest the shoulder and arm for the first few weeks after a MX now but I did the recommended exercises 3 years ago and fortunately no harm was done.
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I'm too young to have breaks from it yet"
Hi JoyI dont know how old you are, but take nothing for granted. My breaks began in my 40's - from simple falls that I would otherwise have jumped up from and wiped myself off.
I guess the key is not to fall :>)
Many thanks for all the great tips. -
Purple - I had the same lyphedema concerns. I asked my OT about weights, since I was a lifter before surgery. She said I could use 3-5lb hand weights and a max of 30lb on resisitence machines. No more 10-20lbs for big muscle workouts. I was told that weight vests weren't good for the spine. Too big of a chance of making an incorrect movement and hurting the spine and they can also create too much compression on the spine. As always, I'll throw out the disclaimer that we are all different so you'll want to talk to you docs, but I was encouraged that I can lift at least lift light hand weights.
Also has been recommended that at least 50% of every meal be raw foods. I have also learned that too much dairy actually has the opposite effect on the bones. It causes your bones to express calcium during digestion. That made sense to me since I have always consumed a lot of dairy until recent years when I couldn't tolerate it. If lots of dairy consumption helped bones mine should be great. My sister (same size/build) consumes hardly any and has great bones. Now I find that what I thought was helping my bones was actually hurting it. So I'm sticking to just soft cheeses and greek yogurt.
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Mini1
Good to know, and
I am limiting dairy due to the BC anyway though I also allow myself Greek yogurt.
As for :I was told that weight vests weren't good for the spine. Too big of a chance of making an incorrect movement and hurting the spine and they can also create too much compression on the spine"
I was looking into those weighted vests, but I wouldnt dream of having that weight on my breast/ chest now ! Just a thought.Thanks
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Purple, I had many more nodes out than you and during chemo, my arm did start to swell. I started PT and kept it up, do my stretches daily and wear a sleeve often (daily now that it is hot). After 4-5 months of PT, the arm was down to ormal size again. It does act up here and there, but it is minor usually.
At first I was given the normal advice not to do anything strenuous with the arm and no weights. I have since seen newer studies which show that you CAN lift weights and I do. I wear a sleeve and gauntlet when exercising. I stick to really, really small weights (2 pounds for free weights and lowest setting on upper body machines). I work out regularly. Apparently it is important to be steady about it and not do a bunch, then flake out, then do a bunch etc. So slow and steady.
So far I have not had a problem, and if anything the whole situation seems a bit better. -
Good to know, Momine and I hope it continues to improve for you !
Thx -
Purple, Thanks, I hadn't heard of that problem with weighted vests before but it makes sense. I have some lovely flat soft sand filled weights that I intend to sew into a stretchy top so it shouldn't bother my flat chest area if I stay clear of the breastbone. The main thing is to get equal weight between the front and back so my balance isn't thrown out. If it causes a fall it would defeat the purpose. I'll take it really easy at first to make sure there is no pressure on the spine so I'm most grateful you warned me of that potential problem.
When I first found out I had osteoporosis over 2 years ago, I joined a gym and did a heap of exercises there and at home so I hope if I was going to have breaks they would have happened then. I'm 61 and my youngest turns 20 tomorrow, so no more teenagers at home! We had our family late. I'm sorry you've had these problems and hope you can get back on track soon.
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Joy - I have learned that a high acidic diet actaully leeches calciium from your bones. Ironically too much dairy makes you acidic. The optimal ration of acidity in your body should be 60% to 40% (acidic). Keeping the Ph balalnce of your system is as important as your diet and exercise. I hadn't been aware of that before. I thought by drinking a lot of milk and eating hard cheeses I was doing something good for my bones. Now I keep my dairy intake to Greek yogurt and soft cheeses.
A good resource for good information regarding bone health is the book Better Bones, Better Body and the TV series' FoodMatters and Knives Over Forks. I found those two on NetFlicks, but they may be available on the internet somewhere. They all have a lot of good information on nutrition and how it works both for ang against your body. I am 55 with osteoporosis, so QOL is very important to me; especially now that I have 3 grandchildren. I called dibs on "fun grandma" so I have to be able to keep up with them and do all the fun stuff! Good luck with your work out regimen. :-)
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Thanks Joy.
Best of luck to you as well!
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Purple, the stress you're putting on yourself searching for something you can take in place of the things you can't is probably doing you more harm than good. You've older, you've got a good diagnosis and in all probability you'll be just fine if you just go on and enjoy your life without focusing on needing to take something. As you know, I refused it all and I'm just fine over 8 years later. Not everyone needs a drug, or regime or supplement to prevent a recurrence. Stop driving yourself bananas over this - just let it go and live.
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MarieKelly, I agree with you on your advice to Purple. It's hard for me to deal with worrywarts. You could give yourself cancer
. Once I go back for my pre-op visit following my exchange, I'm done with all this crap. I do consider myself cured. And for anyone who doesn't like it, well tough toenails!
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Mini1, I've read from various sources that the acid in proteins leaches calcium from our bones, and I've always been a lover of cheese and yogurt. I eat very little meat, mostly when I'm eating out and fish or vegetarian is not an option. Fish and nuts are a large part of my protein intake and I need to look more into the pH effect of various foods so I can stop that leaching of calcium.
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Br J Nutr. 2008 Jun;99(6):1335-43. Epub 2007 Nov 28.
Urine pH is an indicator of dietary acid-base load, fruit and vegetables and meat intakes: results from the European Prospective Investigation into Cancer and Nutrition (EPIC)-Norfolk population study.
Welch AA, Mulligan A, Bingham SA, Khaw KT.
Department of Public Health and Primary Care, University of Cambridge, Strangeways Site, Wort's Causeway, Cambridge CB1 8RN, UK. ailsa.welch@phpc.cam.ac.uk
Abstract
Evidence exists that a more acidic diet is detrimental to bone health. Although more precise methods exist for measurement of acid-base balance, urine pH reflects acid-base balance and is readily measurable but has not been related to habitual dietary intake in general populations. The present study investigated the relationship between urine pH and dietary acid-base load (potential renal acid load; PRAL) and its contributory food groups (fruit and vegetables, meats, cereal and dairy foods). There were 22,034 men and women aged 39-78 years living in Norfolk (UK) with casual urine samples and dietary intakes from the European Prospective Investigation into Cancer and Nutrition (EPIC)-Norfolk FFQ. A sub-study (n 363) compared pH in casual samples and 24 h urine and intakes from a 7 d diary and the FFQ. A more alkaline diet (low PRAL), high fruit and vegetable intake and lower consumption of meat was significantly associated with a more alkaline urine pH before and after adjustment for age, BMI, physical activity and smoking habit and also after excluding for urinary protein, glucose, ketones, diagnosed high blood pressure and diuretic medication. In the sub-study the strongest relationship was found between the 24 h urine and the 7 d diary. In conclusion, a more alkaline diet, higher fruit and vegetable and lower meat intake were related to more alkaline urine with a magnitude similar to intervention studies. As urine pH relates to dietary acid-base load its use to monitor change in consumption of fruit and vegetables, in individuals, warrants further investigation.
PMID: 18042305 [PubMed - indexed for MEDLINE]------------------------------
Proc Nutr Soc. 2003 Nov;62(4):889-99.
Intake of fruit and vegetables: implications for bone health. -
This is a more recent study.
Proc Nutr Soc. 2010 Feb;69(1):166-73. Epub 2009 Dec 3.
Postgraduate Symposium: Positive influence of nutritional alkalinity on bone health.
Wynn E, Krieg MA, Lanham-New SA, Burckhardt P.
SourceUniversity Hospital (CHUV), 1011 Lausanne, Switzerland. emma.wynn@rdls.nestle.com
AbstractThere is growing evidence that consumption of a Western diet is a risk factor for osteoporosis through excess acid supply, while fruits and vegetables balance the excess acidity, mostly by providing K-rich bicarbonate-rich foods. Western diets consumed by adults generate approximately 50-100 mEq acid/d; therefore, healthy adults consuming such a diet are at risk of chronic low-grade metabolic acidosis, which worsens with age as a result of declining kidney function. Bone buffers the excess acid by delivering cations and it is considered that with time an overstimulation of this process will lead to the dissolution of the bone mineral content and hence to reduced bone mass. Intakes of K, Mg and fruit and vegetables have been associated with a higher alkaline status and a subsequent beneficial effect on bone health. In healthy male volunteers an acid-forming diet increases urinary Ca excretion by 74% and urinary C-terminal telopeptide of type I collagen (C-telopeptide) excretion by 19% when compared with an alkali (base-forming) diet. Cross-sectional studies have shown that there is a correlation between the nutritional acid load and bone health measured by bone ultrasound or dual-energy X-ray absorptiometry. Few studies have been undertaken in very elderly women (>75 years), whose osteoporosis risk is very pertinent. The EVAluation of Nutrients Intakes and Bone Ultra Sound Study has developed and validated (n 51) an FFQ for use in a very elderly Swiss population (mean age 80.4 (sd 2.99) years), which has shown intakes of key nutrients (energy, fat, carbohydrate, Ca, Mg, vitamin C, D and E) to be low in 401 subjects. A subsequent study to assess net endogenous acid production (NEAP) and bone ultrasound results in 256 women aged > or = 75 years has shown that lower NEAP (P=0.023) and higher K intake (P=0.033) are correlated with higher bone ultrasound results. High acid load may be an important additional risk factor that may be particularly relevant in very elderly patients with an already-high fracture risk. The latter study adds to knowledge by confirming a positive link between dietary alkalinity and bone health indices in the very elderly. In a further study to complement these findings it has also been shown in a group of thirty young women that in Ca sufficiency an acid Ca-rich water has no effect on bone resorption, while an alkaline bicarbonate-rich water leads to a decrease in both serum parathyroid hormone and serum C-telopeptide. Further investigations need to be undertaken to study whether these positive effects on bone loss are maintained over long-term treatment. Mineral-water consumption could be an easy and inexpensive way of helping to prevent osteoporosis and could be of major interest for long-term prevention of bone loss.
PMID: 19954569 [PubMed - indexed for MEDLINE]
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Joy - I was just reading about the Ph urine tests. I'm going to do it and see where I fall. I've become much more nutrition aware since my bout with pancreatitis and finding out I have a gluten-intolerance last year. With my diet restrictions I could never do a strict vegan diet like many advocate, but I think I am going try to work my way to a lacto-ovo vegetarian diet. I'm already limiting my red meat to very small lean portions and have gone organic and hormone-free on pretty much everything I can.
I read recently that every meal should be 50% raw. I'm trying that too. I'm not rushing into it because I know me and I'll get discouraged if I don't get it right and I don't want to fall back into old habits. So I'm starting by eating more fruits and veggies and less meat. Trying to do just hormone-free chicken and a little hormone free pork loin. I eat nothing from a package. My regular docs orders are if it's in a can, bag or a box it cannot have more than 5 ingredients and I have to recognize what they are (vitamins don't count). You'd be surprised how few things you can buy that do not meet that criteria.
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We try to eat vegetables that are in season in North America. It makes the fruits and vegetables taste that much better if we eat only for a season. We mail order Fuerte Avocados from California. Fuerte is a winter avocado that is very smooth and buttery. They don't do well for mass growers so one has to find a source. I eat an avocado a day but by the end of the season in March, I am sick of them. By Christmas I am desperate for a Fuerte.
It's the same with berries, oranges, asparagus. I think that in the case of fresh seasonal produce, absence does make the heart grow fonder.
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lisa
You said :
"It's hard for me to deal with worrywarts. "
I find that a little offensive. We are all different. I don't see the need for character assasination or insulting remarks - we all have cancer, and we're in this together.MarieKelly,
I appreciate your post.
Thank you.
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Ummm, We have cancer. I don't think that learning all we can so we can make an informed decision about our treatment plans makes us "worrywarts." I agree with Purple. Our choices may not be the same as yours, but there is no need to be insulting about it. We are here to support each other not to criticize one another's decisions.
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Thank you mini1.
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I read the comment as a joke because of the emoticon. I don't think lisa intended to insult anyone.
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The emoticon came after the cancer remark, not after the worrywart insult.
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The two comments seemed to go together, i.e. the thing that might give you cancer is being a worrywart - then the emoticon. In other words, the worry wart comment was part of the joke. It might not have hit the mark, but that's how I read the intention.
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Ha ha ha.....the eenie, meanie, minie, moe system! I like that!
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