Jim's Calcium level has been around 10 since Dec 2020. He had his first Lupron shot Jan 2021. Abiraterone started Mar 2021.
He has been on 1000mg of Oyster Shell Calcium and when I recently reviewed her instructions from 2020 I realized she had wanted him to take 650mg calcium citrate or carbonate. After reading the posts below, I messaged her. I had no idea Calcium could be a problem.
Thank you
The citrate is preferred for absorption.
Does he have osteopenia or osteoporosis?
-Patrick
No he doesn't, at least not so far. He's on long term Lupron and Zytiga. I see a lot of Citrates, but they all seem to have trace minerals combined zinc copper magnesium etc. Don't know if that's an issue. Thank you Patrick
Minerals are complicated. When people use a high dose of a single mineral, it is usually at the expense of another.
Cal-Mag-Zinc combination supplements are common. I don't use a calcium supplement (I get enough from food & as a minor ingredient in other supplements.) I do use a magnesium supplement & I also take zinc citrate. I would never take anything that had copper in it.
With homeostasis of blood levels of calcium, it is natural for calcium to be taken from bone & returned later. The transport of calcium back to bone requires vitamin K (vitamin K2-7 is best, since it isn't quickly cleared from the body.)
And, of course, vitamin D is a big player in calcium homeostasis.
-Patrick
"I would never take anything that had copper in it."
Because it interferes with magnesium, or promotes PC progression, or?
Copper is required for angiogenesis.
Wilson's disease is a genetic condition where abnormal levels of copper accumulate in the body. Tetrathiomolybdate is a chelating agent that has been used to treat Wilson's. In a Phase II study of Tetrathiomolybdate [1] (2006), copper deficiency was achieved, but that did not stop progression. Even so, I wouldn't supplement with copper. {Actually, I have been concerned about our copper pipes for 16 years. We have copper stains in the bathrooms. I suppose that our well water is somewhat acidic.}
From a 2015 paper [2]:
"When grouped together, cancerous prostate tissues exhibiting moderate disease severity (Gleason Score 7) (n = 10) had 1.6-fold more copper than age-matched normal tissues (n = 10) ... Those with more aggressive disease (Gleason Score 9) (n = 8) had 1.8-fold more copper ..."
"In both disease stages however, the copper concentrations between individual samples were rather variable (0.55-3.02 μg/g), with many clearly within the normal range". "The heterogeneous nature of copper concentrations in cancerous prostate tissues, suggest that a small subset of patients may respond to treatments that target elevated intratumoral copper."
A more promising study from last year [3]:
"Reduction in copper uptake and inhibition of cell proliferation were demonstrated in prostate cancer cells treated with the new steroid-based compounds synthesized in this study. Steroid-based copper transporter 1 inhibitors may become novel anticancer drugs for targeted anti-copper therapy of prostate cancer and other copper hypermetabolic cancers."
-Patrick
[1] pubmed.ncbi.nlm.nih.gov/176...
[2] pubmed.ncbi.nlm.nih.gov/260...
[3] pubmed.ncbi.nlm.nih.gov/348...
Patrick, very impressive commentary. May I ask ...what is your background that allows you such in -depth understanding of these many factors? Or just immersion in studies of anything that may thought to be related to PCa?
As a systems analyst for various clients, I found that going wide & deep for information was key. And, unfortunately, it had to be done quickly. I was lucky to be diagnosed before the PCa studies on PubMed began growing at an exponential rate. I have had 18 years of reading new papers. It's not a burden. There's usually something to interest me, but mostly I don't post unless I know a dozen others might find it interesting. LOL Sometimes I get that wrong.
I can usually find old papers that support an opinion or provide background to a new paper. I dont maintain a file for easy reference (it would be very large if I did & a pain to keep up to date.) No doubt ADT will eventually destroy my ability to quickly access the PubMed archive (currently 253,128 prostate hits).
Basically, it's fun - & I don't play golf. And I can sip on a good wine while I am at it.
Best, -Patrick
I don't understand why people buy combined mineral such as Calcium/Magnesium/Zinc as one wins and the other two are wasted. All my minerals and vitamins are separate so I can dose them according to the situation. I often take most of my vitamins at once but for minerals, I try to space them at least 2 hours apart so that they don't compete with each other for cell absorption.
I take calcium citrate-vitamin D. Is he on xgeva?
No he's not. He started Lupron January 2021 and Zytiga March 2021.His MO told him to take calcium and vitamin D. However I didn't realize that she had said carbonate or citrate and he's been taking oyster shell. So looking to switch but overwhelmed by the vast amount of products. lots of small print for additives, and I don't want anything to interfere with his medications, or make his PCa worse.
Thank you Magnus
I ordered a bottle of Citrical Plus D but it has a bundle of additives and trace minerals...so didn't use it.
Citrical doesn’t have any magnesium. Not the best. I use Kirkland Calcium with Magnesium supplement via Amazon. Don’t worry it so much. It will not interfere with treatments at those doses of supplementation which are quite reasonable.
Thank you. I am concerned of this year of 1000mg of the oyster shell calcium. I messaged his MO. I am hoping she takes him off the calcium completely but we will see. Appreciate the insight you shared.
Since you've had the same surgery as my husband, curious as what supplements you take for bones, heart, brain function, and other problems losing T causes? My husband is 79 and has Osteopenia, and mild memory problems. His MO wants him to have surgery on his lower spine to correct bone on bone disk and a TURP. Which at his age, any surgery can be scary and very long recovery times. Thanks
Wow, that is a lot of surgery. The TURP is very important and the bone on bone must be very painful. I do take a vitamin D3 supplement for overall health. I have never taken anything for memory. There are several drug I take after bypass heart surgery but they are prescription drugs.
Thanks for responding. I know, not a fan of surgery at his age. When he had his Orch last year, it took a long time for recovery so not looking forward to this. Going to ask if trying therapy first could help his back? Also needs Cateract surgery on both eyes. Just asking how you keep your bones, etc. good?
Good question. My husband is taking 1800 per day due to low calcium levels after xgeva. Xgeva has been put on the back burner for the over a month now.
Hope it gets back where it's supposed to be quickly. I think Jim's MO had him start "preemptively".
Thank you and hoping good for you and your husband.
Try tums for a while. I'm sure they will be checking his calcium levels.
Oh! Well thank you.
I was told to take it as well and I am hesitant after discussions on this forum. However, I am currently off ADT so I am not currently in the same boat as Jim. My current blood test says Calcium is normal, but I read somewhere, though unable to confirm, that your body steals calcium from your bones to maintain a normal blood level. I have not had time to investigate it further.
I use Jarrow’s BoneUp capsules. I have osteopenia, DEXA dropped to -2.1 on ADT. Also I eat moderate amounts of goat cheese/milk and sesame seeds.
Why is he taking a calcium supplement?
When he started Lupron January 2021, his MO told him to start 650mg Calcium and 2000mg Vitamin D. Her name is Hala Borno at UCSF. Have you heard of her? She was assigned to Jim's team I guess is how it works.
Never heard of her. "She told him to take it" is an inadequate answer - why? There may be a good reason: he had low blood calcium level or that he was taking a bisphosphonate. You have a right to question.
Thank you. I'm sorry, we didn't ask. She mentioned that the hormone therapy would be hard on his bones, so I "assumed" it was preventative. I will message her and ask. Jim's RO, Dr Osama Mohamad is extremely engaged and keeps in touch regularly. We have only spoken with Dr Borno once, October 2020, although she does respond to messages.
His calcium has been steadily around 10 since his first CMP in Dec 2020 (which he has monthly since Feb 2021) I'm not sure what a biophosphate is. He gets 3 month Lupron, 1000mg Daily Abiraterone and 5mg prednisone. Really appreciate your time.
A bisphosphonate is what is given to some people with osteoporosis. Men with castration-resistant PCa often get Zometa or Xgeva to combat osteoporosis and prevent fractures. But its use in men who are still hormone sensitive is controversial because their adverse effects accumulate over time. Men on hormone therapy should have a DEXA scan every few years to see how their bone mineral density is doing.
His serum calcium is normal. The downside of supplementing calcium when it is not needed is that it has been associated with encouraging prostate cancer, and also may have adverse effects on the heart and on stone formation. Vitamin D supplementation at a rate equivalent to 2000 iu/day for 5 years was recently found to cause 24% higher cancer mortality:
thelancet.com/journals/land...
Wow, now that's frightening. He had a Dexa scan prior to starting hormone therapy but have no idea the results. I will definitely message her and see if she responds. I can't imagine why a medical oncologist at a place like UCSF would not know this, very disappointing.
My gynecologist has me taking 5000mg day, the lowest my D ever was is 32 and it stays about 85. I'm definitely addressing this with him. He says it should be between 75 and 120 and current guidelines are too low. And this to prevent cancer! So glad to have this information.
Thank you again!
This is very recent. You might want to send them the link on Vitamin D and also these on calcium:
aacrjournals.org/cebp/artic...
ncbi.nlm.nih.gov/labs/pmc/a...
So appreciate thisThank you
I messaged Dr Borno. Jim's been taking 1000mg of Oyster Shell Calcium for a year now.
I'm not sure how we got there from 650mg Of citrate or carbonate other than being overwhelmed back then, not writing it down, and not realizing it could be an issue. But when I went back and reviewed her notes yesterday from a year ago, I saw our error and that's what prompted this post, as I needed to adjust what we were doing. Apparently much more than I realized!! So hopefully we've caught this early.
Thank you!! My husband started a regiment of calcium and vitamin D with his first Firmagon injections. He is due to start Eligard and Xgeva every 3 months at the end of March. His DEXA was good, no bone pain and he finally got a PET scan yesterday to see what his mets are. I will take your articles. Xgeva side effects...ugh.
I also go to UCSF and that's where my medical oncologist is. Both he and my GP wanted me starting on Fosamax when my DEXA scan showed up -2.1. I think that's the number that it was reading but don't have it at my fingertips right now. But both my doctors were uncomfortable with that reading given that I was always in great physical health. DEXA scan was done but I had been on Lupron after my RP and radiation. Then again I was in ADT drugs trial that consisted of three different ADT drugs. So now I take Fosamax once a week in the morning. My calcium is staying up around 9.5 to 9.8 so I'm pretty happy about that part. And I exercise my hips and femur by doing a lot of leg presses and focusing on a lot of different individual exercises for strengthening those areas and keeping it from getting any worse. Next DEXA scan in six months. Just so you know if you're signed in from My Chart and if the scan was done at UCSF. The results will show up in your my chart file mine did at least. I was actually able to upload my PSMA scan two days after was done. I was able to read the entire report and also see the scans of the bone lesion they found on my iliac bone. Same with DEXA scan all the reports were there I could read them myself so I felt better being able to communicate with both my doctors.
Thank you, helpful information. Jim had his Dexa scan here locally so it's not in MyChart. Everything else we have access to in MyChart. It was done March of 2021 before he started Abiraterone, and they never told us what the results were and have never mentioned Fosamax. We have a follow up appointment with Jim's RO in July, so we'll ask him. Jim's MO assistant asked about the Dexa scan a month ago and then said that they had it on file. No one has mentioned a 2nd scan. Have no idea what protocol is. Jim's Calcium remains high 9's, although I don't think that means his density is good. Jim does a great deal of walking daily as we have livestock to take care of, and lots of maintenance work. He rides daily, so his legs get plenty of work, although he has mentioned they feel much weaker than a year ago. It gets wearisome having to drag information out of the doctors and wouldn't even know we needed to ask if it wasn't for this site. Guess that's just how it goes these days.Thank you again.
You advised me against Zometa and you were soooo right. Researched it after your comment but not before my first (and last) dose. Had normal bone density and am mHSPC and feeling great and very active. Skeletal survey in November verified prior PET scan with extensive blastic metastases greatest in pelvis and proximal femurs. What do you think of a repeat skeletal survey after 6 months to check progress?
Only need for another PET is if you have reason to change therapy.
All of the Primary endpoints failed to show any statistically significant difference. No benefit measurable in this diverse unscreened population in sunny Australia with 60,000 units once monthly. But no harm on primary analysis either. They had to massage the data and exclude the first two years to squeeze out a difference in cancer mortality. Makes that value suspect.
They eliminated deaths in the first 2 years because Vitamin D intake would not have had time to have any effect on cancers that were so progressed as to be near fatal.
So Dr Borno's NP just messaged me. He said Jim does not need to take a calcium supplement as long as he has enough in his diet to keep his serum in normal range. He says that through diet and if necessary combined with supplement "if necessary " a man with Low T needs to consume 1000mg Daily. Also the weight bearing exercise (which he does inadvertently working on the ranch daily)He did say he wants him to continue the vitamin D at 1000mg Daily.
I will ask why.
I am so relieved and can't thank you enough for "suggesting " I ask questions of the Dr.
My guess is that he gets more than enough Vitamin D from working outside on the ranch. Almost all dairy is Vitamin D fortified too. Bony fish (sardines, anchovies, canned salmon) are probably the best source of calcium. Yes, weight-bearing exercise will do more for his bone mineral density than any pills will.
Hi TA. At my hospital (Montreal Jewish General), it is a standard practice to prescribe Calcium + Vitamin when prescribing ADT since ADT is known to lead to a faster bone loss than normal. However they never told me that I should also supplement in Magnesium because the ratio of Calcium to Magnesium should be kept below 2:1. So if you take 1000mg of Calcium per day, you should take about 500mg of Magnesium. I take the Bisglycinate form of Magnesium instead of Citrate because I get the runs otherwise with that much Magnesium.
There is no evidence that calcium and vitamin D (even with magnesium) prevents bone loss. In fact, it has been tested and it was found that it is not preventative. In fact, high intake of Vitamin D has been shown to decrease bone mineral density. You should only supplement if your serum levels are low.
prostatecancer.news/2018/07...
You may want to question the standard practice at your hospital.
I had a DEXA scan Eight months ago showed osteopenia/osteoporosis. My MO and GP at UCSF wanted me on Fosmax once weekly. They understand I am reluctant to any additional medications that aren’t necessary but both of them stated they felt it would be best to add this to what I’m doing as well as concentrate more on weight bearing exercises. Also wanted me to continue getting DEXA scans at least annually. And both of them also wanted me to mention any noticeable negative side effects I was having from the Fosmax which apparently may contribute to issues if you’re having dental work done which I’m luckily not.Also had question regarding anyone has information on Broccoli supplements. ( sulforaphane supplements ) Based on studies by Jed Fahey and others at John’s Hopkins. If you’re familiar with any would love your thoughts and input
Who is your MO at UCSF?Thank you
My current MO is Dr. Rahul Raj Aggarwal at UCSF. He was chosen by my Surgeon Dr Peter Carroll at UCSF and Dr. Charles James Ryan a medical oncologist specializing in urologic cancer at UCSF who moved back where he was from to practice at
M Health Fairview University of Minnesota Medical Center. I read On this site where Tall Alan recommended him highly if someone were traveling and wanted to find a great medical oncologist that dealt with aggressive prostate cancer that he’d be worth going to see at UCSF. I feel fortunate and having Dr. Aggarwal as my MO since June 2018. He was able to get me into a trial that helped for a while and also also recently worked with me when I had a PSM a scan that showed a small lesion on my iliac bone that he worked on with radiation oncologist for SBRT radiation of that one small area. That area was treated in October with SBRT radiation for five treatments. Prior to that radiation treatment my PSA every 58 days. Since the treatment I have had three blood test I get them monthly because of my trial with the chance I have to get them every month the rest of my life which is fine with me because Jansen pays for it. What we’ve noticed is that the PSA velocity quotation doubling time which had been every 58 days has now dropped every 206 days which I consider a big win at this point. Dr. Agarwal And radiation oncologist confident what they saw on the scan was an actual metastatic lesion. Which they believe with the three blood test and the significant drop in the velocity of doubling time confirmed that it was a true prostate cancer metastatic lesion. None of us believe that this was one and done we all know it is systemic. The current plan more blood test and eventually another PSMA scan and ADT in my future. My experience at UCSF since 2014 when I was diagnosed and had my RP done by Dr. Peter Carroll has been that Every from my surgeon and my radiation oncologist MO and RO has been focused on my longevity quality life during that longevity.
Thank you for that information. My husband also started with Dr Carroll August 2020. but after the mpMRI Dr Carroll said Jim was not a candidate for surgery and referred us to Dr Osama Mohamad radiation oncologist and Dr Hala Borno medical oncologist. We are very pleased with Dr Mohamad. He has been in regular contact with us since October 2020. However the jury is still out on Dr Borno. She was very good on our initial consult with her November of 2020. But we have not had a single follow up appointment since. Her team is very good at responding to our messages and questions, but there is no initiation of contact on her part. Jim thinks that means no news is good news, and with his PSA at undetectable guess there's nothing to talk about.Anyway, I was just curious who your team is at UCSF. Glad to have a reference in case we need to change MO's at some point.
Thank you
I understand your anxiety about no contact from MO but if your PSA is " non detectable there's not much for them to talk to you about. I get blood tests monthly as part of the trial I was in so my MO and I both see my PSA , Testosterone , and complete blood panel every month. I talk to my MO on Zoom every three months. He asked me if I wanted to come to his office at Mission Bay in San Francisco. I told him unless there was a need for me to make the 20 mile drive that myself and my wife were good doing Zoom. When my PSA was doubling every 58 days. We agreed on a PSMA scan once PSA got to .5 In October 2021 when my PSA was .7 I had a PSMA scan that found one small bone met. My MO wanted to see me and my wife face to face to discuss what the options were and show us the results of the scan and make sure we had plenty of time to discuss what he thought the plan going forward should be. The good news I got from your message was that Dr Carroll said Jim was not a candidate for surgery and referred you to Dr Osama Mohamad radiation oncologist and Dr Hala Borno medical oncologist. And that Jims PSA is non detectable. 👍
Yes, I liked the small RCT on sulforaphane done in France (below). I haven't seen a Johns Hopkins study:
Calcium citrate is the better choice as per study's., I can remember my mom had kidney stones so she stopped taking calcium supplement which was the carbonate kind. I am also on xgeva every 3 months, my calcium is 8.7 so eating oranges , low fat cottage cheese and low fat dairy products like cheese.
Thank you, this is so helpful
Thank you for that summation. Unfortunately I don't understand most of it, but I did gather it can be bad for gout and kidneys. He only has one kidney, so that's very bad. I have no idea how to broach this with his oncologist, and I'm a bit frightened and feel a loss of confidence in this doctor. Is oyster shell calcium as harmful as carbonate? He has been taking the oyster shell type.
Thank you again
One more thing...he takes indomethacin for his gout daily.
Oh great, just gets worse. No where on the bottle does it say carbonate. Had no idea there were so many variable types of calcium. Thanks so much
He's been using it for years and i have always hoped his doctors would recommend some alternative. They just keep refilling it.Thank you
Oyster shell calcium is essentially calcium carbonate. There are less expensive and purer forms. And citrate is fine too.Calcium is best balanced with Magnesium in a 2:1 ration. I don’t think the addition of zinc and copper is a bad idea, but they too must be balanced. I think the optimal ratio is 2 mg copper to 30 mg zinc.
Thank you!
My wife's nephrologist is dead set against anyone taking calcium supplements. I guess for obvious reasons from a nephrology perspective. He even wrote a chapter in a technical medical text decrying the use of calcium supplements. Anyway, I've been on Orgovyx for one year and my calcium level has stayed right in the middle of the normal range (as defined by CU Medicine). I've not taken the calcium supplements even though my urologic oncologist recommended it. I'll continue to monitor blood calcium levels and do the DEXA scan on a regular basis.
Thank you for sharing this.
My choice, two salted pretzels a week from the dirty street vendor on 5th Avenue. Topped off later with chocolate chip ice cream (two scoops)...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/16/2022 7:23 PM EST
We have found that calicum levels can bounce. Hope your husband's levels out. We are dealing with low calicum at the moment - taking 1800mg - Xgeva has been halted.
Thank you Sunshine.Actually his calcium level is just fine. So after reading these posts I messaged his MO and they had him stop the supplements. But they want him to get 1000mg Daily through diet. He's also extremely active so I think that helps with the bone strength.
Really hope your husband's gets back to normal soon.
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