Has anyone here had success in building bone density with strengthening and nutrition rather than drugs? I'm 56 yo female - on W&W since May 2014, newly diagnosed with osteoporosis following an slip and wrist smash a few weeks ago. Would love to hear your stories - the side effects of the six monthly injections aren't particularly attractive at the moment. Thank you in advance.
CLL & Osteoporosis Treatment: Has anyone here... - CLL Support
CLL & Osteoporosis Treatment
Written by
peas50
To view profiles and participate in discussions please or .
40 Replies
•
after a really long ICU & hospital stay - my skeleton & muscles were messed up ( as was everything)
I was put on a high protein, calcium & fat rich diet.
I was also advised that regular exercise was essential. First I had to learn to walk, Once I returned home and over 2yrs I eventually got to doing at least 2 hours and 30 minutes of moderate-intensity aerobic exercise, such as cycling or fast walking, every week. Weight-bearing exercise and resistance exercise, I was told, were particularly important for improving bone density and helping to prevent osteoporosis. I am less fragile 😊
Are you on HRT? I believe it is suppose to be one of its benefits but not sure it can help you recover, more a preventative but worth looking into if you aren’t already taking it.
Hello - yes I had a fall in the pub earlier this year resulting in a full hip replacement
I was very surprised to discover I have advanced osteoporosis
I have just been prescribed a newly licenced treatment romosozumab monthly injections
I also walk regularly waiting to see Phisio
Hi peas50, I have mild osteoporosis in my lumber spine and stopped meditation due to horrible side effects. For the moment on the advice of my internal medicine specialist I've increased my protein intake, take D3, calcium and very importantly K2 from natto (not the same as K1 from green veggies) the K2 makes sure the calcium goes where it should rather than clog up the arteries.
I also recommend two books Osteoporosis Reversal Secrets by Igor Klibanov which gives advise on diet, exercise and success stories and Resistance Bands for Seniors by David O'Connor.
I've started with increased protein and got the resistance bands, now just need to do it 🫣🤣😎
Good luck 🤗
Thanks so much for this information! I will look for these books and am keen to try everything else before having to resort to the injections. I worry about the real possibility of the side effects! Your program sounds promising! Cheers!
If you have osteoporosis you need to have a good hard look at your diet and exercise routine. What you need is to make sure that you have sufficient intake of vitamin D, K2 and calcium. They work in synergy. If one of these is missing or is insufficient your bone density is not going to improve. Lastly you need to engage in resistance training. Not cardio. Not walking. Weight lifting. If you never lifted weights before consider talking to a personal trainer. People who have a good diet and do resistance training do not normally get osteoporosis.
Hi LeoPa,
This reminded me. Interesting discussion following your last post. I wanted to ask, when you have your CBC panel done do you get a metabolic panel done as well?
I'm curious to see your results and any changes, if you're ok with sharing.
Be well,
Lynn
Hi Lynn, some basic metabolic panel items are included. Which ones would you like to know? Next Friday I should have the results of my latest blood draw.
Thank you LeoPa.
In answer to your question, it's the basic ones done to check general overall health for heart, liver and kidneys. So, HbA1c for blood sugar, Lipid assessment for cholesterol, triglycerides, calculated LDL & HDL ratio, Creatinine (eGFR), and ALT liver enzyme. Not sure which ones of these they test where you are located.
Have any of these changed when there's been changes with your blood counts? Are your blood counts stable?
I am genuinely curious because my bloods show perverse results at times. Your diet is aimed at optimal health and I believe originally you were diagnosed with MBL?
I was diagnosed with SLL and my diet is not optimal. My non-fasting blood sugar jumps around, but a glucose tolerance test was normal. My cholesterol level is higher than it should, but my HDL:LDL ratio shows the good cholesterol higher than the bad. My vitamin D level is low, my calcium level normal, yet I have calcium deposits in the skin on my hands. I could go on ad nauseum; the more tests the more doctors shake their heads!
I am interested to see if there are any similarities, despite our differences.
Hi Lynn, welcome! For calcium to be deposited in the bones and teeth and not anywhere else like in your skin or your arteries you need sufficient levels of vitamin D and vitamin K2. If any of these is missing, calcium can be deposited just about anywhere and that is a bad thing. Checking my previous blood draw results: glycated hemoglobin is not done, only fasting blood glucose 4.8, creatinine is always on the high side, at 114,8 last time (I eat a lot of proteins, train a lot and am way more muscular than the average person my age, so hopefully that's the reason 😄), my cholesterol content is high, 8.35 which is normal for a person who's metabolism is running on lipids. If it isn't glucose, it has to be lipids 😄. Lipoprotein molecule breakdown is not done, triglycerides not done. The last time TYG were checked they were low and HDL was high, which is also normal with this kind of diet. The ratio between these two is actually called The Paleo indicator of health. My vitamin D was not checked but I'm very sure that it is high because I do full body sun exposure for one hour every day so I should produce 20,000 IU daily in season because my cholesterol is high and as we know vitamin D is made from cholesterol in the skin under the effect of UV rays. This is one of the reasons why suppressing cholesterol levels with drugs don't make sense. Off-season I take 2000 IU of vitamin D daily.
I think it is normal that non fasting blood sugar jumps around if you are not on a ketogenic diet.
After meals it is supposed to go up, then it slowly comes down.
Mine don't jump around too much. I can have a blood glucose of 5.5 after meals because they mostly don't contain any carbs, but if I eat lots of proteins I noticed that my blood glucose can go up as high as 6.2 and stay there for a long time. Once I had like two pounds of meat for dinner late in the evening and my morning blood glucose was 6.2. that got me thinking about how that is possible. Shouldn't my morning blood glucose be way lower than that? Yes it should and it mostly is. But if the meal contains no carbs then there is not much insulin response. While excess protein gets converted into glucose, the rise of the glucose level is slow and not dramatic enough for the body to panic and to release a large amount of insulin to get rid of it because 6.2 is still low in terms of a postprandial glucose level. So my takeaway is that if I keep digesting protein all night long then even after a zero carb dinner my morning blood glucose can be over 6 😄. With blood glucose the dispersion between the peaks and the troughs is what is important. The lower the better. That is to say the more stable the blood sugar level is around normal levels, the better.
My AST was 0.51 and ALT 0.74, both normal. Liver should be OK.
Once I get the latest results I will write a post.
Thanks for the information. I really don't know enough at the moment to comment especially as your diet is so different from mine. Some initial thoughts, please keep in mind that I'm trying to understand what my own body chemistry is doing which makes me curious. I had an MRI of my cervical spine and one of those incidental findings was an empty sella, basically I have no visible pituitary gland. The pituitary is called the master gland and connects directly to the cerebellum.
I've told doctors for months that my brain/body have a signaling problem & my immune system has a warp drive. A recipe for disaster, but convincing doctors that something is wrong when blood tests are misleading is next level.
Vitamin D is synthesized in the skin by UV light into hormone form that works with calcium. Calcium is a mineral with many functions in the body not just for healthy bones & teeth. If I understood correctly it is also a big part of signaling between the brain and body. I don't have answers yet but my problems are way more complex than diet alone. The symptoms of a damaged pituitary can take literally decades to manifest.
Another question for you. Is there much research on how zero carbs & high protein diets change body chemistry? Are there altered serum ranges that take this into account or are standard lab guidelines the only ones? The only reason I ask is that a morning glucose level of 6.2 puts you in the prediabetes range assuming a 'typical' diet. I thought non fasting glucose levels should stabilize about an hour after eating? 8 hours with nothing to eat is sufficient for a fasting blood or glucose test here.
Thanks again. I'm off to see rhuematology so we'll see where this leads. Endocrinology or back to Neurology. I thought it was just the nodes in my neck impinging on nerves in my spinal column. 🤣
Lynn
Hi Lynn, welcome! I don't know anything about calcium's role in signalling. It makes sense that it must have more roles than just strengthening bones and teeth. The bones are the calcium reserves of the body. If we don't consume enough, the body will take it from the bones. I was only focusing on how to get it into the bones and teeth and avoid it being deposited in artery walls because that is what is dangerous. It can lead to heart attacks and strokes. I was pre-diabetic. That is one of the reasons why I adopted this diet. If one is insulin resistant it is very possible that blood glucose levels will not come back down as fast as they should after a meal. Surely not within 1 hour. Many pre-diabetic and diabetic patients have them chronically elevated without even knowing about it. And they can do a lot of damage in the body before anybody notices the problem. Just like high blood pressure, initially one doesn't know about it and it is already damaging his health.
But I'm not insulin resistant. How do I know? If I eat enough carbs to trigger and insulin response, my blood glucose level drops. If I don't eat carbohydrates, my blood glucose can be as high as 5.5 depending from how much protein I ate. Then if I eat 2 oz of dark chocolate, instead of my blood glucose level going up it drops to below five. Because insulin is secreted and I respond promptly. I don't know whether there is research regarding this but I figured these things out myself. You can find YouTube videos where carnivores and keto adherents share their blood chemistry results. I hope your doctors find a way to figure out the pituitary gland issue. Best of luck to you!
Thanks again LeoPa.
I find it interesting to see how others approach something, it's amazing what you learn. That's why I always try to keep an open mind.
Be well. Hope your next round of blood results are holding.
Thank you, I hope too 🤞
Thank you for your wise words. I have good vitamin D and loads of calcium in my diet, but not sure about K2! I walk a lot! I don't do weights - never have. My grandmother grew up on a dairy farm, ate cream on her ice cream, worked in her garden every day, wonderfully healthy, but had osteoporosis by the age of 40. I've been told that it's also hereditary, unfortunately. Thought I had great bones - obviously not! I will look more into K2 and I think get a proper weight/strength routine from a good physio. Thanks again!
I was diagnosed with osteoporosis years ago. There is a strong hereditary factor and after menopause we are more prone to it as well. Being small plays a part also as we have less bone mass. I fit into all three of these categories. My CLL doc and I talk about it at my visits. I’ve always been active and my daily food intake is healthier than most. Bone scans show it has slowed after years of Fosomax. If you can get your tennies and light weights out. :). I feel much stronger when walking and lifting etc. We walked nearly 5 miles outdoors Saturday 😊
Wonderful to hear! Thank you for your reply. How do you find Fosomax... is it an injection? Side effects? Or possible side effects? Thank you.
It’s taken weekly in pill form. There’s a long list of side effects but I’ve only experienced heart burn. The consequences of a broken bone when older can be devastating and this is why my CLL doc regularly brings it up. If you’ll do some reading you’ll read walking is considered weight bearing and is recommended for those of us with osteoporosis. I normally walk a 17-18 minute mile (and at least three miles) in a local park that has lots of hills to climb up and down. I’m very fortunate to have a best friend that’s an athlete.
As osteoporosis drugs we just beginning to be approved 30+ years ago, I attended a seminar put on by a pharma pushing their product. One of the things that has stuck with me was their emphasis that having good balance was the one of the best ways to prevent falls and broken bones, so as you work on everything else, also work on your balance. Good luck!
I have had osteopenia for the past 10 years without taking any vitamin s then I started taking a daily omega 3 1000mg and D3 1000mg after being dx with CLL. My last two bone density tests showed I’m normal for a women of 76. I just wish I could find something so simple to help my CLL.
Hello triptoGeorge
I have had cll diagnosed 20+ years ago, with ww. Having monthly infusion of gamagoblin, for the past few years.
Diagnosed with osteopenia then recently osteoporosis.
I have for years taken vitamin D3 and other supplements.
Not good with calcium intake though😕
Have walked for exercise on and off for many years.
Last couple of month taking a balance class one day a week.
Scheduled a bone density 2 year follow up in December.
I am in my 80’s now.
Well first off, your doctor is probably useless. Asked my wife's orthopod a very good one, what to do about osteoporosis, he laughed and said that an orthopedic surgeon is the worst person to ask about osteoporosis. Really.
This is sobering, it is exactly as if a woodworker did not care whether they used Pine, spruce or Mahogany for a project. unbelievable. Makes all the difference in the outcome of the work.
So, unfortunately we are on our own. Apart from excellent advice already given, i think that about 1200 mg perday of Calcium is needed, ideally not from supplements. Greens are a good source, consume several handfuls daily. I microwave two handfuls and include it with two meals a day, under whatever else you eat. Makes intuitive sense since our nearest animal relatives, the great apes, mostly eat leaves, some nuts, fruit. A bit of animal products, grubs, meat, when they can get it. Interestingly, todays supermarket greens may have 60 % less Calcium,nutrients than in 1960's, a consequence of industrial farming.
So need to eat a good bit more than back then. Be warned, build up your intake slowly, we eat trivial amounts of fiber and it can take months to get accustomed. Otherwise serious abdominal cramps.!Similarly, Vitamin D ideally at least some from sunlight. At least during warmer days. 10-15 mins with few clothes should be enough. This is a really important nutrient, but may have consequences if taken in larger amounts, Vascular calcification, etc. probably best to be guided by Vitamin D levels, though some docs are dead set against doing them. Am working on how to sunbathe nude at home. Challenging!
Weight bearing exercise of course. Have vibration plates as well.
Medication certainly for higher risk situations, but everyting has side effects.
Overall the evidence is not amazing, but seems best to try everything that is not harmful.
Aging is a hard job.
Check out youtube videos by Dr Doug Lucas. He is an orthopedic surgeon who now focuses on osteoporosis.
I was dx with OP around the time I was dx with CLL- @52. Both are hereditary for me. My gyno sent me to an Endocrinologist immediately. Shortly after I had a fracture! Started actonel & stayed on it about 6 years. Back then they didn't know we shouldn't be on a bisposphonate that long. Then I did Forteo for the 2 year protocol. Very successful. Took a break for few years. Back then 2011 they didn't know I needed to go right back on a bisposphonate. Went back on Actonel & after 4 years it stopped working. Now I am doing Prolia. Meds are very helpful. Fractures can be scary. Took me 12 weeks to heal when people without OP only took 6. See an Endocrinologist & get second opinion. My oncologist was fine with the OP meds.
I have not tried this, but you can check with this lady:
Person lifting fork with leaves on handle standing beside words, "Food for healthy bones."
I was diagnosed with osteopenia years ago and was advised to go on medication. I probably should have, but didn’t. I now have osteoporosis in my hips and osteopenia in my spine. I have been taking vit. K2, calcium with D3, fish oil and a multi vitamin. My son-in-law is a chiropractor and advised me to get a vibration plate, which I did. Doctors have said there is no scientific data showing that a vibration plate makes a difference, but I figured what the heck and use it anyway just in case. He also wants me to do weight bearing exercises which I just started as well as walking, which I have always done a lot of every day. I just turned 77 a couple of days ago and started on a once a month Boniva tablet. I’m hoping with all of this, my next Dexa scan will show some improvement. I am also on the small side at 125 lbs and 5’4”. My mom also had osteoporosis.
I hope your next scan goes well! I'm keen to hear your results too. The vibration plate has been mentioned a few times here, and my surgeon also mentioned it in the same way you described. I think it's worth trying! The assortment of vitamins and oils sound great! Take care and thank you for your good information.
I am 69 years old and have been in watch and wait for 19 years. We should not have the injections! In the US that drug is called Prolia. Look up the side effects. It can cause increased infections and is a bad match for us. I tried Fosamax - once a week pill and had terrible acid stomach. My doctor mentioned the injections but after research I mentioned my concerns and he agreed. So then I ended up getting Reclast. (I'm using the name brands because those are the words I can remember. I'm pretty sure all of these medications come in generic.) Reclast is a once a year infusion. One of my friends warned me to make sure I was well hydrated the day before and the day of and so far so good. That was last May. It turns out Reclast, in some cases, is used for solid tumor treatment in leukemia patients. I cannot tell you about whether it has helped my bones because I only got the infusion in May. I thought about trying to go natural (exercise and diet) but it takes a lot of work and dedication to do the exercises daily, and it turns out CLL increases our osteoporisis risk. So I decided to go with medication and do my best to do more weight bearing exercises and make sure I get enough calcium and protein in my diet - but not too much calcium due to kidney stones and cardiovascular risks. FYI - the hard stomping is not recommended (if you see that on a YouTube video). If your osteoporisis is advanced you could break a bone! But impact exercises like gentle hopping (I raise up and drop on my heals) and power walking are most effective for reversing osteoporosis. Regular strolling is not enough. I have been very active all my adult life but I'm small and I have lactose intolerance. I was pretty scared about the medications, but so far so good. There is a lot of conflicting information on the internet - as we all know. I found the best information regarding risks was reading the drug companies information insert that had actual percentage risks vs placebo. That eased my mind somewhat. Good luck!
This is invaluable information! Thank you so much. I'll look into Reclast as I think it may be something that might not be here in Australia yet... or if it is, a once a year infusion was not one of the options that my GP or surgeon have mentioned. And I won't be stomping any time soon. haha Much appreciated.
I think the infusion is later on the list. My doctor didn't mention it either until he realized that the injection wouldn't be good for me. I didn't mind the once a week pill except for the fact that I couldn't tolerate it. And I guess that meant I would not tolerate the once a month pill either. Good luck getting it all figured out! The generic name for Reclast is Zolendronic Acid or Zolendronate. For me the pill, Fosamax, was free. The infusion is about $250/year with my insurance.
I’ve had Cll/Sll since 2019 and still in W&W. I’ve gone from Osteopenia to Osteoporosis so my doctor put me on Reclast this year. This is a once a year infusion and my next one will be in November. After the first infusion my bone scan showed no improvement so I’m hoping this next one will. I do walk fairly regular when I feel strong enough because I was also recently diagnosed with sjogrens , which is an auto immune disease and also causes fatigue. Exercise, specifically walking helps me a lot along with calcium supplements. Check your family history because it does run in families. My mother had severe osteoporosis. I hope this helps you some, don’t give up the fight. 😊
Not what you're looking for?
You may also like...
When will I need treatment? Is Watch and Wait still the best option with newer treatments?
Recent updates 2023: https://www.patientpower.info/cll-answers-now-should-i-still-watch-and-wait...
Privigen 45g/4weeks !!!
I was diagnosed in November 7th 2019 following a bone marrow biopsy.
Was on Wait & Wacht...
Over reactive 1st Obin Treatment.
First dose of 100 mcg July 8th and 900 mcg July 9th. After treatment never came back to feeling...
Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!
Welcome to the CLL Support community on HealthUnlocked, a very active community with 23,000...
I was diagnosed with Squamous Cell Carcinoma on my chin today.
Presumably this is a secondary tumor from my CLL. The problem that I am experiencing is that the...
White count increased after starting Brukinsa
VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (CLL/SLL)
Zanu treatment 
Ivermectin
