Bone Health

[Ladydi49]

just wondering how the ladies with bone issues i e osteoporosis manage it along with Cll. (We can’t talk about things like this in the U.S. mine was caused by corticosteroids during my first 6 months of BR in 2018

[AussieNeil Administrator]

Why can't you talk about osteoporosis in the US? Strangely, there are only a few Related Posts, but I know osteoporosis has been discussed more often than that indicates.

Neil

[Zia2]

I have osteoporosis as my mom and grandmother did. We’re all petite and it’s hereditary. So far it doesn’t seem to cause me or CLL any additional problems. I take Fosomax but not as often or as long term as I should I suppose. We can talk about it in the US. I believe Healthunlocked has a group for it as well.

[Name-1 in reply to Zia2]

I have Osteoporosis. Fosomax is not good for me. Now,I use only Cholecalciferol (D3). Bisphosphonatis is very toxic medicaments.

[mrsjsmith in reply to Name-1]

Thank you Olga,

I have recently been diagnosed and waiting for my appointment to discuss treatments. I have been reading about a new drug recently approved by NICE called romosozumab also called EVENITY and would be interested to know if anyone here is on it ?

I have also had several very useful appointments with a balance clinic. I have had terrible balance since a child and the thought of ending up on a hospital trolley with a broken hip fills me with horror.

Colette

[Fran57 in reply to mrsjsmith]

Hi Colette.Although it’s my husband who has CLL, I was diagnosed with osteoporosis and did quite a lot of research ( a lot of which I have forgotten 🤦‍♀️), but I did discover… much to my GP’s surprise, that it can sometimes be connected to hyperparathyroidism… nothing to do with your thyroid. I pursued this and found I had this and the surgeon who I saw said that no amount of drugs would have made any difference, all the time I had parathyroid problems.

Having researched a fair bit, I have decided (for the moment at least), to just go down the exercise and (sort of) diet route.

I know yours is a completely different situation, but I thought you might like to hear my experience, in case it helps.

Stay safe,

Fran 😷

[mrsjsmith in reply to Fran57]

Thank you Fran,

Something for me to research as well. Orthopaedics mentioned Alendronic acid but when I discussed with my dentist her face dropped and she said any extractions would need to be done in hospital to avoid bone necrosis 🙄

Would you mind sharing your exercise and diet tips please. I did see weights, but I think a tin of beans in both hands would be my limit !

Colette

[Fran57 in reply to mrsjsmith]

Hi Colette.I think maybe you should look on the Health Unlocked Osteoporosis site, because I am not completely au fait with it all, but I walk as near to 10,000 steps each day as I can ( not easy during a pandemic 😉) and I use some weights … I started with tins …and because I can’t do push ups, I do them against a wall. There are exercises on various sites ( you just have to check they are okay for you). I eat a relatively healthy diet ( could do better 🙂), I eat prunes every day (yuk!) because they are full of boron which is good. Chickpeas, mackerel, sardines are also good.

I would like to say I do more, but life (and coronavirus!)gets in the way… so I’m not the best example, but I would check out the parathyroid and the osteoporosis HU ( there are people there, like the knowledgeable people here).

I tend to use food rather than supplements and medicines, but it might prove to be no good… I just go with my gut feelings.

Good luck, Fran 😉

[mrsjsmith in reply to Fran57]

Thank you Fran,

Luckily I actually like prunes.

I am very impressed with your 10,000 steps, that puts me to shame. I suddenly realised there is a step counter on my phone so aiming to get to 7,000 a day but not there yet.

Colette

[Name-1 in reply to mrsjsmith]

I had hyperparathyroidismus with high levels Ca and PTH in blood. One parathyroid gland was removed by surgery (PH:Adenoma).Now the level of ionised and ordinary Ca and PTH is normal,but since I have calcifications in the liver and kidney-it not option for me to take Ca orally.Excercises ,swimming,excersise with weights are recomanded..

[mrsjsmith in reply to Name-1]

Thank you Olga,

Did you decide to go swimming in the end.

Colette

[Name-1 in reply to mrsjsmith]

Yes

[mrsjsmith in reply to Name-1]

Good, I am jealous.

Colette

[TXHOUSE in reply to mrsjsmith]

I've been on Evenity since last October. 2 shots every 4 weeks. I feel it has helped my back and I have had no side effects.

[mrsjsmith in reply to TXHOUSE]

Thank you good to know.

Regards

Colette

[Zia2 in reply to Name-1]

I’m fine with my treatment as my doctors are. Best to you.

[LeoPa in reply to Zia2]

Vit. D + K2+ Calcium help with osteoporosis. Synergistic combination. Must be all 3 together. Skip one and no use.

[J1015 in reply to LeoPa]

I take vitamin D to support the calcium and vitamin K 2 to support the D and Magnesium to support the K2. Lol! It’s a chain but like you said, they all support each other to help the body absorb the calcium.

[Edhair97 in reply to J1015]

Do you take the K, D& magnesium all at the same time?I take my K2& D ( combined in 1 tablet), calcium later and magnesium at night.

Thanks , Sallie

[Ibru in reply to Edhair97]

I would like to know that too. I also space my supplements throughout the day.

[J1015 in reply to Ibru]

See my response to Edhair97

[J1015 in reply to Edhair97]

My calcium tablet has D2 in it and I take one in the morning and one at night. I take the K2 in the morning at the same time as the calcium and the magnesium at night.

[Annie1920 in reply to LeoPa]

I was taken off calcium supplements by gp as blood tests showed I had sufficient.. Overdoing calcium can be harmful evidently

[LeoPa in reply to Annie1920]

No need for supplements if you eat calcium rich foods

[charliegirl]

I have osteoporosis as the result of huge amounts of steroids to treat a complication of my CLL.Sadly I had a pelvic fracture before haematologist started me on bone protection.

I have now taken alendronic acid for 3 years as well as calcium and vitamin D and do as much walking as I can. No more fractures. I also take various medications for my CLL too

No problems talking about it in UK

Best wishes

Charlie Girl

[J1015]

Not sure why you feel you can’t talk about osteoporosis. It’s a common topic with all my doctors and friends. I am currently taking a weekly dose of Alendronate which is the generic form of Fosomax for osteopenia. I have been on it for three years and my bone density is slowly improving. I am a member of a great Facebook group called CLL/SLL/NHL Cancer support for women where any and all mental and physical issues can be shared. That group (along with this one) has educated me beyond measure. Wishing you the best.

[CycleWonder]

I have osteoporosis. I have had two knee replacements and one hip replacement. The only tenuous connection with CLL was that my hip was replaced soon after my diagnosis. Otherwise, it may have occurred later. We all thought it would be better to do it sooner than later.

I am doing PT for balance and to strengthen my core as well. I take Calcium (via milk) , Vitamin D3 and Vitamin K.

[mrsjsmith in reply to CycleWonder]

When recently tested my calcium levels were good so rather than taking yet another pill I also rely on food for my calcium.

Colette

[Lasweetpea]

I am 4 years on W&W and have osteopenia. Many others have suggested to you walking, weight bearing exercise and supplements. Absorbing the nutrients is critical as well, I take garden of life calcium with K and D3 along with extra D3 as I tend to run low. Many gentle yoga exercises are actually bone building as well and might help you feel like you are supporting your bone health. A quick google search will give you the specifics. I wish you the best and hope your next bone density scan shows improvement.

[Doggoneit101]

I have been told that I have osteoporosis. It was confirmed by a bone density scan after several broken bones. I take Prolia shots which seems to help. I'm also much more careful now then I was a couple of years ago. When my doctor ordered the bone scan I had a foot broken in 3 places, 1 broken rip and 2 broken toes. I took a tumble down a flight of stairs. Since I have been getting the shots no broken bones ( knock on wood). I was worried about side effects from the shots but haven't had any so far. Best of luck for you

[Unglorious]

Prolia injections every six months are helping me. Fosomax and Didrical (excuse the spelling) for many years did nothing and my osteoporosis kept on getting worse. Ask about Prolia.

[marge9mid]

I am 72 and have CLL/SLL in a partial remission, having been on acalibrutinib (Calquence) 100 mg twice a day in trial since September 2016 and am on Evenity for Osteoporosis. I will finish my year of monthly injections tomorrow Monday August 29, and receive my treatment at Vanderbilt University Medical Center in Nashville, Tennessee in the US. I was on Prolia prior to that for a couple years every 6 months. I will have my repeat Bone Density Test in October to check the efficacy. I was having a lot of joint pain, which is a possible side effect of Prolia, so we thought a change to Evenity might help. Incidentally, Evenity can have the same side effects, but it was worth a try. I didn't notice any change. I'm looking forward to going off of it and will probably resume Prolia according to my Rheumatologist. The research on this medication has shown great results in building back bone density. I also do several senior group classes at the YMCA every week which includes, strength training, balance and flexibility. I also do yoga and Tai Chi for seniors. I am basically a vegan who eats occasional fish. I guess that makes me a "flexitarian". I do take extra Vitamin D 1000/ day and Calcium tablets 1000/ day and make up the rest of my calcium requirement with dietary calcium. I wish you well in your treatment. Overall, it has not been very difficult. I would pass along this tip. The two injections I have gotten every month are much more comfortable to receive in the abdomen. They are rather uncomfortable to receive in your arm. Good luck to you.

[mrsjsmith in reply to marge9mid]

Marge,

Thank you so much for that information.

Colette

[JeannineMarie]

I also have osteoporosis and have for many years. For a very long time I was on Fosamax however a couple years ago my PCP took me off of it. There was some risk using it for as many years as I had and had no significant improvement. I have not taken anything since that time and have regular DEXA scans that show my osteoporosis improving. I also have hypothyroid.