Bone Density Loss- Side Effect?

This topic has 16 replies, 9 voices, and was last updated 6 years, 4 months ago by Mat.

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- January 18, 2018 at 4:11 am
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jennunicorn
Participant
Hi everyone!

I have recently been dealing with knee pain at a higher level than usual despite taking glucosamine joint supplements. Other joints are doing fine, but I had some knee pain years before doing any immunotherapy. So, I just had a x-rays done on my knees, showed cartilage loss which was not surprising. But the surprising thing that it also showed was osteopenia.. loss of bone density. Not quite osteoporisis, although I have not had a bone density scan done so I don't know exactly how bad it is yet.

I have been on vitamin D3 1000iU daily for almost a year. I may need to up that dosage.

My question is whether anyone has read or heard about bone density loss as a side effect of immunotherapy? Or if anyone has experienced it (at an age where it would not be common).

I have my post-surgery scan tomorrow (finally) and will also see my oncologist. Going to bring this up to her as well and see what she thinks. I am going to be 31 on Sunday… but, my body seems to think I'll be 71, sheesh!

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Replies

- - January 18, 2018 at 11:30 am
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  dessie
  Participant
  Jenn, I am not sure about the loss of bone density with immunotherapy however I do know that thin small boned women are at higher risk of bone loss. Asian women, hypothryoidism, slight frames , premature ovarian failure can raise your risk of osteopenia. Check with your health care provider about possible options for treatment ie bisphosphonates, calcium with D. You are young for osteopnia however you are also petiite and small boned. The immunotherapy could have possibly sped up the bone loss but this whole melanoma treatment and disease is new to me so I can only speak to my knowledge of who develops osteopenia not to how immunotherapy impacts this. Hope your scans go well …
  
  PS I get my path report today!! Staying postive for a great negative report!!
  
  D
  - January 18, 2018 at 12:23 pm
    
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    Joycem
    Participant
    
    (No insight on relationship to treatment either but) My vitamin d levels were low despite taking 2000u/day. Probly worth checking if that has not been done. 6 mo at 5,0000 per day brought it up, and doc suggested going back down to 1000. I feel significantly better.
  - January 18, 2018 at 4:24 pm
    
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    jennunicorn
    Participant
    
    I had it checked a few months ago and it was in normal range. I will probably ask to get it checked again soon to see where it is at now.
  - January 18, 2018 at 4:20 pm
    
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    jennunicorn
    Participant
    
    Well, I wish I could say I am petite and small boned, haha, but that isn't the case. Thyroid levels have been normal, I have never taken steroids for any side effects. It's a mystery to me haha. Keeping positive thoughts for both of us today! 🙂
- - January 18, 2018 at 1:01 pm
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  MichelleRHG
  Participant
  Jenn, I don’t have the answer to your question but I love your new picture! Also, I take 1 50,000 unit capsule of D3 per week. Initial Rx was for 14 weeks, just got a renewal and will then go down to 5,000 per day. Just fyi.
  - January 18, 2018 at 4:23 pm
    
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    jennunicorn
    Participant
    
    Thank you! As much as my knees kill me I can't stop from going on adventures with my dog and my boyfriend, haha.
    
    I have heard those super high doses of Vit D don't actually get absorbed into the body, but I will do more research and see what both my PCP and oncologist think about amping up my dosing of Vit D3. Thanks for letting me know.
- - January 18, 2018 at 1:27 pm
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  marta010
  Participant
  Hi Jenn – long term steroid use can contribute to bone density loss. My husband has been on hydrocortisone for quite a while and his endocrinologist recommends that he takes a calcium supplement. Not sure if this is your situation or not but thought I would mention.
  
  Ann
  - January 18, 2018 at 4:20 pm
    
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    jennunicorn
    Participant
    
    I wish I had an easier explaination, I have never taken any steroids. Thank you for letting me know, I will probably get a good list of supplements from my doctor soon.
- - January 18, 2018 at 4:10 pm
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  Gene_S
  Participant
  Hi Jenn,
  
  If your Vitamin D3 is low is will rob calcium from the bones. Also you should take a vitamin K with it so it absorbs more.
  
  When my D3 was at 17 I fell and broke my arm and I had never had a broken bone before.
  - January 18, 2018 at 4:23 pm
    
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    jennunicorn
    Participant
    
    I had it tested a few months ago and my levels were in normal range. I will look into taking vitamin K as well for absorption, thank you!
- - January 18, 2018 at 4:38 pm
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  sister of patient
  Participant
  Hi Jenn – I can't find the posts now but I'm pretty sure that within the last 6 mos., there were two that were from fellas on here who were both dealing with a similar issue and it did seem to be related to their immunotherapy. Around the same time, my sister's onc sent her for a bone density scan too, so I think it can be something they watch for.
  
  On another thought, you say the exrays showed cartilige loss – is this from sports injuries – wear and tear .. that kind of thing? Asking because I wrecked my knee as a kid, had surgery then that was absolutely archaic and caused a ton more damage over the years, not the least of which was osteoporosis – had that fixed about 6 years ago and the surgeon actualy injected a "bone culture" that he hoped would regrow new bone and fill in the hole (and it did). But it was just the one knee and all as a result of injury.
  
  Happy Birthday in advance of Sunday!!!! Wishing you many happy returns from the day!!!! 🙂
  
  Barb
  - January 18, 2018 at 6:44 pm
    
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    jennunicorn
    Participant
    
    Aw thank you Barb!!
    
    Will try and search for posts about this topic. My knees have been a mystery to me since I was a teen… I have never played sports, done occasional hikes and things like that throughout childhood and adulthood but nothing crazy. It's not genetic since both of my parents have good knees.. my dad is going to be 70 this year and hikes about 20-30 miles a week! Our bodies are mysterious things!
    
    Much love to you and your sister 🙂
- - January 19, 2018 at 3:37 am
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  jennunicorn
  Participant
  After talking with my oncologist today I think we decided that the 2 years of being on pantoprazole (PPI) is the culprit. Which sucks because if I don't take the pantoprazole I literally feel like vomiting all day long and can't sleep. If I do take it then it's stopping my body from absorbing vitamins and calcium. So, she's going to do some more research into the really high dose prescription Vitamin D3 and calcium and let me know how much she suggests to take and I will take them at night when I take my iron supplement (since I take pantoprazole first thing in the morning) so hopefully I can get this stuff to absorb into me. She also wants me to get a bone density scan to see how mild or not so mild the loss is.
- - January 19, 2018 at 4:28 pm
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  Gene_S
  Participant
  Vitamin D3 levels should be at the high side or normal for all cancer patients was what I found in research. Normal range was raised from 30 to 70 to 50 t0 70 because they found the 30 was to low as well.
  - January 19, 2018 at 5:45 pm
    
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    ed williams
    Participant
    
    Could you please post that data for us Anon.
- - January 21, 2018 at 10:22 pm
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  Mat
  Participant
  Jenn, I have treatment-induced osteopenia as well. I assumed that it was a side effect of long-term use of prednisone (off and on since 2014 and consistent use since 2016). I've tapered to 7.5mg/day (still needed for arthritis) and am aiming to get off of it asap. I take Fosamex in addition to vit D and calcium, though I recently saw a NYT article to the effect that studies show that vit D and calcium don't really help with bone loss.