Calcium and D3 supplements best pract... - Advanced Prostate...

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Calcium and D3 supplements best practices?

ELOfan profile image
74 Replies

PCa Friends, Due to cancer EXTENSIVE bone-mets ADT therapy and triplet therapy, the Dr. told us I have to take CALCIUM and D3 and so I went to the pharmacy and quickly bought NatureMade gummies (Tricalcium phosphate 500mg and Cholecalciferol-D3) cause my multi-vitamin didn't have enough. I'm nearly out and so before buying again, I just searched

"What type of Calcium supplement is BEST absorbed?"

It replied,

"Calcium citrate is generally BETTER absorbed than calcium carbonate:

Calcium CITRATE: Absorbs well with or without food, and is recommended for people with low stomach acid or inflammatory bowel disease. It's also a good choice for people who take antacids that reduce stomach acid. However, calcium citrate contains less elemental calcium than calcium carbonate, so you may need to take more tablets to get your daily requirement.

Calcium CARBONATE: Absorbs best when taken WITH food, and is often found in antacids like Tums and Rolaids. Calcium carbonate contains more elemental calcium than calcium citrate, but it requires stomach acid to be absorbed.

In general, calcium supplements are best absorbed when taken in SMALL doses (500 mg or less). The body absorbs about 36% of a 300 mg calcium dose and 28% of a 1,000 mg dose.

You can check the label of your calcium supplement to see how much elemental calcium is in a dose. You can also look for products with the USP (United States Pharmacopeia) symbol on the label, which indicates that the product has been tested for adequate absorption." -Google

So I wonder if any of you have more helpful vitamin-knowledge about this to share before I buy more calcium? I think i will just get ones to swallow this time to avoid the 5gsugar, salt and color additives in the chewable gummies. Thanks in advance,

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ELOfan
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ELOfan profile image
ELOfan

I'm kinda leaning toward buying this one, but there are so many I may be unaware of something better. "CITRACAL Maximum Plus, 650 mg Calcium CITRATE, easily absorbed and highly soluble with 25 mcg (1000 IU) Vitamin D3, Bone Health Support, Calcium Supplement"

Maxone73 profile image
Maxone73 in reply toELOfan

I am on zoledronic acid IV every 28 days (so they tell me it's standard practice with zoledronic acid) and my MO told me calcium (500mg per day plus the one I ingest with my diet, to be sure levels are high but not too high) + D3 (2000 UI per day) and vit K2 to help calcium go where it has to go. He really never specified a brand but I have vit D levels checked every 3 months and calcium every 28 days and they are ok for now.

It seems like vinegar and extra virgin olive oil salad dressing is great for the scope of increasing adsorption: vit D and K2 are liposoluble and they go greatly with oil, and vinegar increases calcium adsorption when ingested together

MNGopher profile image
MNGopher

Looks like you have done extensive research. Same symptoms as my partner. Will follow up with Oncologist. Calcium infusion to begin shortly on a monthly basis. Will ask about Vit D and added calcium.

Beets coated with olive oil then into air fryer. Following…

JohnInTheMiddle profile image
JohnInTheMiddle

Dear ELO 🎶🎵,

Very good questions! On an important topic! And to my mind poorly managed in the whole space.

Doctors say take calcium and vitamin D, "maybe". But what dose, and what form?And as far monitoring levels in the body? So many questions! And how about doing this in the context of DEXA bone mineral density (BMD) scans?

Because if we end up with osteoporosis then one will be invited to take denusomab or other bone strengthening drugs. More drugs. And then of course if we do resistance exercise maybe we can push back on the osteoporosis. And all the doctor says is "take calcium and vitamin D". As I said, this is under managed.

And yet fractures can be devastating. Apparently it's possible to maintain bone strength, but it takes attention.

(I won't even bring up the question of estradiol add-back which is a major opportunity to forestall osteoporosis. And let's not even consider as well the increased risk of arterialsclerosis by badly managed calcium consumption.)

One big ball of wax. Another elephant in the room. And the cliche of a prostate cancer patient standing in front of the supplements aisle at the drugstore and wondering what the heck to do.

Here are some comments:

1. I take calcium citrate pills, two of them, for a total of 700 mg a day. (I recently increased my dosage to this number because apparently this might help control blood pressure.)

2. I take 2000 IU of D3 per day.

3. I also take magnesium bisglycinate and I've read that the two metals compete for absorption so I take my calcium and magnesium at different times.

4. Your comment about maximum absorbability at one time for calcium suggests I should maybe consider taking my two pills at different times during the day. I need to read up on this.

5. If one is concerned about managing the "calcium and vitamin D3 axis", it's worth investigating whether a vitamin K2 supplement would be a worthwhile and safe addition to your regime. From my reading the three work together synergistically in important ways. In fact in terms of an axis, one could add magnesium as well. All four together.

6. I'm a lay person and an amateur in this space. But I have a strong sense that the whole business of calcium and vitamin D3 supplementation in the context of metastatic prostate cancer is poorly managed by my healthcare providers. This whole question seems to be very important in terms of the ongoing success of one's therapy, and the avoidance of risk. And we're thinking both of cancer progression and cardiovascular disease and bone fracture. Many of the articles one can read on a quick Google search are not very helpful summaries.

7. Reading Max's note above,l reminds me about the sequencing of supplementation: empty stomach or not, antagonistic absorption rules, maximum absorption capability at one time, fat or no fat, time of day etc. I'm just beginning to figure this out.

8. Calcium, calcium, calcium! It's worth noting that bones are made not out of not just calcium! An exclusive focus on calcium is pretty simplistic. The answer is of course, a good diet.

9. What is the Hippocratic oath? Do no harm? I'm really not a doctor but it's a pretty good guide to any kinds of supplements. Taking a supplement is a big responsibility. Make sure you're not making things worse.

10. Carthago delende est and don't forget to exercise today 😃

ELOfan profile image
ELOfan in reply toJohnInTheMiddle

Hi John, Thanks for all this info. so I can learn more. Interesting point about taking magnesium separate from calcium so they don't compete.

I don't know anything about K2 but will investigate

Agreed VAGUE instructions from healthcare providers about calcium and D3 so we stood in pharmacy both overwhelmed and unprepared to compare options. Poorly managed compared to very specific prescriptions.

I also read its dangerous to get more than 2000 D3 daily so gotta watch cause its added to things like Muscle Milk and Ensure!

Agreed overall good diet and daily exercise are ESSENTIAL and I am doing both. I also was shocked that my platelets and red blood cells were low on the CBC test. Last night we had lentil soup with sweet potatoes and other good stuff. Take care

JohnInTheMiddle profile image
JohnInTheMiddle in reply toELOfan

Good point ELO about one's total calcium or D3 or any other nutrient - the sources include include what one eats! I eat cheese, and that will add to my calcium for sure. As for D3, there seems to be a lot of conflicting information. And one reads something and the author is very adamant that they are correct etc. . .

Tinkudi profile image
Tinkudi in reply toJohnInTheMiddle

Tall Allen says no to calcium supplements if serum calcium levels are normal.

I had earlier done a lot of reading on k2. There are 2 kinds. Mk4 and Mk7. I give dad the Thorne brand k2 drops which are of the MK4 kind since many years. 15 drops 3 times a day and 4000 IU vitamin D. Not giving calcium tablets yet.

Hope you are doing well 😊

JohnInTheMiddle profile image
JohnInTheMiddle in reply toTinkudi

More things I need to double check. My medical oncologists said take calcium, but just in the course of a meeting, casually. Such an important thing and not very systematically managed.

However I'm thinking I may be okay here because I get a blood panel every 6 weeks or so and my calcium is right in the middle of the desired target.

But it worries me. Whereas I've been mostly focused on cancer for over 2 years, I'm now concluding that I have to start focusing on heart and cardiovascular. Although thank heaven I'm doing well.

ELOfan profile image
ELOfan in reply toELOfan

John, So I asked the Dr. about whether K2 was a good idea for me or nor and the response was, "Calcium citrate and D3 are research based, I can't speak to K2, I don't know."

goodmaann profile image
goodmaann in reply toJohnInTheMiddle

ENSURE supposedly contains calcium plus Vitamins D and K2 which help to absorb the minerals.

j-o-h-n profile image
j-o-h-n in reply toJohnInTheMiddle

Wasn't Kato (Cato) the Green Hornet's sidekick? Or was he just some Cat who was jealous of Hellenes....

Good Luck, Good Health and Good Humor.

j-o-h-n

Mascouche profile image
Mascouche

I think that taking some D3 is a good thing, along with magnesium and vitamin K2 MK7, in order to push calcium out of the blood stream and into the bones.

But I do not believe that taking calcium supplement is a good thing as it simply gave me huge kidney stones (the biggest being 11mm).

After experiencing the kidney stones, I stopped supplementing in calcium. I keep my bones healthy by pumping weights and running and I get my calcium the natural way, through eating things that contain some such as a little cheese. Between the exercise, D3, magnesium, K2 and natural calcium, it seems to work so far.

Mascouche profile image
Mascouche in reply toMascouche

The AI seems to agree with me:

***

To ensure calcium gets into your bones effectively, it’s important to consider a few key nutrients and practices:

Vitamin D: This vitamin is crucial for calcium absorption. Without enough vitamin D, your body can’t absorb calcium efficiently. You can get vitamin D from sunlight, foods like fatty fish and fortified dairy products, or supplements1.

Magnesium: This mineral helps convert vitamin D into its active form, which aids in calcium absorption. Foods rich in magnesium include nuts, seeds, whole grains, and leafy green vegetables1.

Vitamin K2: This vitamin helps direct calcium to the bones and teeth, preventing it from depositing in the arteries. You can find vitamin K2 in fermented foods like natto, cheese, and certain meats1.

Balanced Diet: Consuming a diet rich in calcium is essential. Dairy products, leafy greens, almonds, and fortified foods are excellent sources2.

Regular Exercise: Weight-bearing exercises like walking, running, and resistance training help stimulate bone formation and improve bone density1.

Tall_Allen profile image
Tall_Allen

What is your serum Vitamin D and calcium? DXA scan results?

JohnInTheMiddle profile image
JohnInTheMiddle in reply toTall_Allen

I'm learning about the various things ones needs to do to look after a situation of metastatic prostate cancer.

It's easy to say, but I have never been offered a vitamin D blood test.

And my DEXA scans are normally according to policy 3 years apart; however my next scan is fall 2025. This will be more than 2 years since my last scan. My last bone density scan was very good. It seems to me that this would be something that one would want to do once or twice a year. I also read that the cost of the scan is not very high.

So my plan is to work with my physician rather than my oncologists. Fortunately I have one, only 1/3 of Canadians do. The rest of them have to go to a clinic.

ELOfan profile image
ELOfan in reply toTall_Allen

After a MONTH of taking calcium daily my calcium is now acceptable 8.8 (Normal calcium range is 8.5-10.5). I don't think they tested my D level. I haven't had a DEXA scan.

CAMPSOUPS profile image
CAMPSOUPS

If you have extensive bone mets you might have been started on a bisphosphonate drug such as Zometa.

In my simpleton explanation Zometa removes calcium from your blood serum and brings it to your bones. Myself and others are typically recommended by our MO to take calcium if receiving Zometa treatment to maintain a adequate blood serum level of calcium. I found it to be a simple request and same with you my MO wasnt too concerned about absolute intake etc. The frequent blood tests for us stage 4 guys is enough that the MO can tell if blood serum level is adequate. I only took 500 mg daily that came with some D3 for the 4+ years on Zometa and never had issues.

But again I'm writing you assuming you might be getting Zometa tx.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toCAMPSOUPS

I've been offered bone strengthening drugs. I'm on doublet therapy now and I did full on Docetaxel chemo. I accept the therapy I'm offered and I'm doing great. And so for my bones are doing great.

But I was offered bone strengthening drugs at the very beginning. And the list of side effects were very daunting. So I've decided not to use them. I'm trying to balance D3, calcium, magnesium and K2. And trying to do weight-bearing exercise.

It's so easy to say "take bone strengthening drugs". But I haven't seen any RCTs on this. And again my concern is about more drugs and more side effects.

CAMPSOUPS profile image
CAMPSOUPS in reply toJohnInTheMiddle

Hey john your a smart guy and you seem to do a lot of research.

I'm a bit fatigued at the moment so this is not meant to be rude its just my writing is minimal.

There is a difference between needing bone strength meds for extensive bone metastases' (where it is critical to slow the breakdown of the bones, and hopefully build up some of the damaged structure) and for osteoporosis a whole different thing.

Please do a little looking into it.

For example in a person like me with extensive bone mets at dx my blood serum calcium levels were high as the bone breakdown causes a dump into blood serum. And again Zometa brings serum calcium back into the bones.

Really if you research and get into the weeds on the first treatments for widespread bone mets the "job" Zometa does might be almost a fight against the PC itself. It is also necessary to avoid fractures in such a compromised condition as extensive bone mets.

Osteoclasts, reclasts dive into the research john lol.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toCAMPSOUPS

Super thanks CAMPSOUPS! You make some really good points. Especially about Zometa I like to read up on this now.

In my situation my bone mets who are mostly around my ribs and a few spots on my hips - but worse three significantly compromised vertebrae. And the serious and well researched medical advice for me was, on multiple occasions, "don't twist". Whatever that means. And so I am at risk of a catastrophic situation.

But fortunately right now I don't have any long bones mets. And my DEXA scan a year ago showed that my bones over all are very strong. And this was after the first year of therapy. So that's something to be happy about.

You mentioned the business of rising blood calcium. I am also terrified of this. Because of course it would indicate that bone mets are active and destroying bone and dumping the calcium into the blood, as you say.

This whole topic that you have raised, which we could call the big picture of the PCa bones and calcium life cycle, is very good to add to the discussion about calcium, D3, K2 and magnesium. And exercise. And arteriosclerosis due to excess calcium along with the effects of ADT.

I did go looking for where you were rude in your comment, but I didn't find it. 😃

CAMPSOUPS profile image
CAMPSOUPS in reply toJohnInTheMiddle

😍😍

PELHA profile image
PELHA in reply toCAMPSOUPS

How did you decide Zometa vs Prolia?

CAMPSOUPS profile image
CAMPSOUPS in reply toPELHA

Well I came into this fully stage 4. Given 3 months to a year. Make it to a year. Might make 2 years. Make it to 2 years might make it to 5 years. And to my joy I am doing pretty good now with the 5 year mark this month.

The diagnosis was devastating. Taking time to second guess, research was not in the cards. I was a Hospital Corpsman 40 some years prior. Had seen many body scans and x-rays. When I saw my first scan my brain froze. "I cant be seeing what I think Im seeing". Are the healthy parts of the skeleton the black and gray areas or the white areas? No,no, crap all that black and gray is my cancer.

I needed treatment and needed to get started. Zometa was thoroughly explained by the MO and it made a lot of sense for someone in my situation. Later when things calmed down I could look into it more and I was glad Zometa was chosen.

But again IMHO I think we have to differentiate between treating osteoporosis and treating crumbling bones due to bone mets.

Prolia is common for osteoporosis. Not for extensive bone mets.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toCAMPSOUPS

OMG another sensible distinction - osteoporosis (due to low or zero estrogen) and crumbling bones (due to metastases). Who would have thunk it?! 😳

CAMPSOUPS profile image
CAMPSOUPS in reply toJohnInTheMiddle

Hmmm. This discussion comes up so often and it turns into solely osteoporosis concerns which get stirred up within the context of treatment for bone mets.

Yea. Crumbling bones lol. Yes I was trying to scream out the difference lol.

Thanks.

PELHA profile image
PELHA in reply toCAMPSOUPS

These things never get explained. Thank you!!! Husband has bone Mets but also osteopenia in hips so was told Prolia to treat that. MOs not on board but we are doing low dose estrogen patches anyway, for hot flashes of course, but I’m more interested in helping bones if possible with all the counter-meds that damage them

Tinkudi profile image
Tinkudi in reply toCAMPSOUPS

hello ,

Where did you get this info that prolia is for osteoporosis and zolendronic acid for weak bones due to mets ? None of the MO’s told me this. Do you have any links ? 😊

CAMPSOUPS profile image
CAMPSOUPS in reply toTinkudi

So sorry. This was a generalization from my own observations and in no way carved in stone I would imagine. I should have had a big capital letter IMHO after the sentence I wrote.

So yep anecdotally, from observation and treatments seen for guys with wide spread mets Zometa seems to be the preferred drug. Appears frequently in trials where the participants have widespread bone mets. Its used in bone spread in breast cancer as well.

Prolia?

Tinkudi profile image
Tinkudi in reply toCAMPSOUPS

I will make a new post regarding this and see what it comes up with. It’s important topic

CAMPSOUPS profile image
CAMPSOUPS

Just now reading your bio.

Wow a fractured scapula.

I walked into the Dr's office with skull to shins mets and PSA 1621.

4 months prior I jerked a storage unit door open like I was a 18 year old and "pulled a muscle" as time went on decided I must have damaged a ligament. Kinda started noticing ribs hurt when I leaned against the couch armrest. Maybe getting some kind of chest wall membrane infection I thought. Appetite started going down hill. My gait was getting noticeably bad.

Then the day came when I realized I couldn't eat anything finally. Serious red flag. I'll go see the doctor. Probably have stomach cancer, a pulled ligament in my right scapula area.

I guess my own scapula is what I was trying to tell you about. I had a large concentration of tumor in it. Compared to you I was lucky than it never fractured especially when I put it thru hell jerking open that manual garage style door lol.

I hope your doing better. It seems so. Seems initial treatment has lessened much of your bone pain but that scapula fracture was kinda out of left field.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toCAMPSOUPS

Hey buddy, you and I had almost the exact same PSA and diagnosis! So now I'm thinking also both of us didn't have an annual PSA test?

Also I read your amazing bio, as far as I can see you did not have any surgery or radiation. This is also my situation - because it was too late. But it is a lovely thing nevertheless. No destructive surgery and radiation.

CAMPSOUPS profile image
CAMPSOUPS in reply toJohnInTheMiddle

Yea I've noticed you since you came on board here. And of course sorry you too found yourself in a situation where this forum became so important to you. I've appreciated your inputs here.

Yea lack of annual PSA tests/physicals was my fault for about 6 years prior to my dx. Every excuse but I'll mention the top one which was I had taken on a small business. So at diagnosis I felt like my personality, my procrastination, put all the responsibility for the terrible mess my family and I were to go thru was on me. You know. All those crushing thoughts. I finally did a f/up that I couldn't fix.

Yea sometimes the seeing what guys have gone thru with intent to cure treatment makes me say "glad I didnt have to deal with that" but then I don't know, the thoughts of I've lived with estimated expiration dates the past 5 years come to mind and I might trade with them, gladly actually. I don't mean to but here goes a grim thing that goes thru my mind sometimes looking at older people going in and out of a store while I wait in the car for my wife and I wish I had there ailments instead of a death sentence.

Anyway. Hey brother. I'm doing very well these days since my successful Pluvicto tx ended in April. (but cyclic vomiting syndrome has put a wrench in how much I have been able to enjoy the good results. But not every day. When Im doin good its really good. But when Im down with the vomiting Im down 4 to 6 days.

Appreciate you checking my bio and cheers to you man. You keep your head up too and hope. Lots of hope.

❤️❤️❤️

JohnInTheMiddle profile image
JohnInTheMiddle in reply toCAMPSOUPS

More encouragement! But cyclic vomiting? Is it radioactive and you have to be careful?

As for regrets on not getting a PSA test, I have also felt the same way about my own irresponsibility. But I do note that I was just letting my doctor look after me with the stupid annual DRE and everything was fine. In our jurisdiction the PSA is not funded by insurance yet. And this means many of us just don't think about it. It's not like it was offered and we didn't bother. I could have got it for $60. But I didn't even think about it.

I've also noticed your posts and your moniker CAMPSOUPS - and keep wondering what your handle is about 😃.

Truly this forum is amazing.

CAMPSOUPS profile image
CAMPSOUPS in reply toJohnInTheMiddle

The vomiting syndrome started well before Pluvicto and I'm well beyond radioactive by now. Just had those days after infusions where I had to take precautions to protect others .

Its a f/ing mysterious sucker. Has a basis in the central nervous system. There's a trigger but science hasn't gotten much further than that. People with history of migraines, and migraines running in there family seems to be common amongst patients. My mom, her brother, and one of my 3 siblings had migraines. Weirdly the syndrome coming on and while its happening and during the recovery has migraine symptoms without the headache part.

Ha. The handle. JUst a name play. Kinda wish I would have used my nickname "soups".

And I just wanted to have an original avatar so I used some of my old "artwork" ? lol.

SimMartin profile image
SimMartin

I understand that in the last 10 years research around added calcium supplements is that dietary is best and adding supplements need careful consideration as it can do more damage especially cardiac implications. Also large doses of vitamin D (more like a steroid than a vitamin mis named historically) are now thought not necessarily good except in the rare cases of very low clinical levels. Indeed it can have negative impact in some. Again food the best and safest source. The need to push serum vitamins D level up well over the old historical level that causes rickets etc maybe be very individually determined and the USA has a higher target level than U.K. and there is some doubt this is research driven but more PR and the dubious implication that large doses of vitamin D helped fight COVID - which unless you were VERY clinically deficient proved to be incorrect but the supplement industry saw it as a marketing opportunity which seems to have drifted into many doctors advice.

I have osteoporosis since and due to polio and then made worse my ADT so on zolendronic acid and so take 1000iu of D3 but my levels are very good 😌 so I may reduce a bit when I see my rheumatologist next.

The problem with calcium is that you can’t measure it directly only the serum blood calcium that does not tell you if you’ve got enough intercellular calcium. So obviously if your serum calcium is high that’s an issue to be investigated but if normal range you may not need added calcium. Some use para thyroid level to test which can add info if high.

I’m not sure how PCa and osteoporosis alters any of this but I don’t take added calcium unless maybe a 250 calcium citrate with a meal if I haven’t eaten much calcium in my food that day (but probably that’s just a bit of OCD on my part) I do however take a daily 100mcg K2 MK7.

My rheumatologist said not to add calcium supplements unless I can’t eat enough in my food which in a normal diet is unlikely especially if you consider dairy and oily fish or even soya enriched milk.

Of course having and living with the possibility of PCa recurrence means sometimes we adopt different strategies from the average adult or elder diet and it’s VERY tempting to latch onto these supplements and dietary restrictions or behaviours - and I’m guilty to some extent as I have adopted a more heart heathy diet but that’s just being healthy.

Cooolone profile image
Cooolone

OP.,. How do you dive into the pool absent being loaded with the knowledge you need in order to make informed decisions? Meaning a Bone Density Scan! Especially with the presence of Bone Mets?

Supplements are great when applied properly band help a well rounded diet for sure. Not sure why insurance wouldn't cover it. I've had a Bone scan every year, alternating between Full Body and Bone Density each year.

Definitely a good subject to cover as it seems to be outside the perview of most MO's until Bone Mets become a thing for the patient. And what I mean by that is using some methodology as a prophylactic to prevent what comes later with sustained ADT for advanced patients.

Anyways, always keeping my eyes open! Hope the intervention with supplements help!

Best Regards!

Explorer08 profile image
Explorer08

My wife’s nephrologist is dead set against calcium supplementation. He’s even written a chapter in a technical medical textbook on the subject. His basic point is that small supplementation amounts just get pee’d out and larger doses accumulate in the system dangerously. Better to get calcium from diet for true absorbability, he says. He noted that there are exceptions but they are rare.

ELOfan profile image
ELOfan in reply toExplorer08

Explorer, Before PCa that was my thought too and I tried to get it thru real food. I eat cheese, greek yougurt and leafy greens, nuts.... But now after Stage 4 diagnosis with extensive bone mets, the Oncologist wants me to consume 1000-1200 calcium a day due to the medications I am on Eligard and Zytiga . So I have added 500 calcium thru supplements, and blood tests show I'm on the lower end of a good range.

jackwfrench profile image
jackwfrench

My uro told me to take 1000/day while on long term HT for bone density but since my serum is solid I am reducing to 500 with MO concurrence, as I suspect it may be holding down my RBC count indirectly. Just one man's experience!

JohnInTheMiddle profile image
JohnInTheMiddle in reply tojackwfrench

Why does calcium hold down one's RBC, Jack?

jackwfrench profile image
jackwfrench in reply toJohnInTheMiddle

just something I read and decided to try upon googling "too much calcium", dont remember which articles

ELOfan profile image
ELOfan in reply tojackwfrench

Interesting my RBC is low too.

janebob99 profile image
janebob99

If you are concerned about osteoporosis, then use low to medium-dose estradiol patches. They have been proven to grow bone, at a much, much lower costs than expensive Forteo.

JohnInTheMiddle profile image
JohnInTheMiddle in reply tojanebob99

Dang JB. Estradiol is the elephant in the room. I'm over 2 years in on my PCa diagnosis, and it's taken me the past year to find out about estradiol. My doctors won't do it. I go back and forth between thinking it's a great idea and that it's a danger. Let's be clear we're talking about low dose here for estrogen and back - not high-dose as ADT replacement. I'm now back on the "I need to get this" point of view.

janebob99 profile image
janebob99 in reply toJohnInTheMiddle

I appreciate the concerns. Let me know if I can send you any more data or papers.

What primary complaint are you wanting to treat?

Bob in New Mexico

JohnInTheMiddle profile image
JohnInTheMiddle in reply tojanebob99

JB - Because our ADT driven testosterone suppression also gives us 0 estrogen, we are now at risk for osteoporosis, cardiovascular disease, fatigue, possibly brain fog. Men need that basic amount of estrogen. Seems to me the science is pretty strong on this. And the PATCH trial reveals the safety of the whole thing, even though that is mostly focused on high-dose replacement, versus low dose add back. Why has the medical community not adopted this yet? It seems to me this is hugely important.

janebob99 profile image
janebob99 in reply toJohnInTheMiddle

It hasn't been adopted yet because of a number of factors:

1. The past history of increased blood clots with oral estrogen (DES), back in the 50-70's;

2. Not enough studies about all the different aspects of tE2 therapy (Big Pharma won't fund them);

3. Some men are very opposed to any increase in breast size;

4. Urologists and MO's haven't been taught about estradiol; and

5. Lack of patient demand, because they don't know about it.

(I've probably missed a few...).

JohnInTheMiddle profile image
JohnInTheMiddle in reply tojanebob99

JB you are totally encouraging! I really appreciate your systematic note!

Your number two was sort of the thing I've been most worried about which is all the weird and complex feedback loops in our strange world of hormones. I keep reading stuff about how estradiol might cause progression! And then we learn about ERα and ERβ, where are the first is bad and the second is good. And apparently estradiol has has significantly higher affinity for the good ERβ receptor. (Apparently this is also true for the interesting genistine and dadzein.)

But I want to be careful - we have a child still in high school and for over two years I'm doing pretty well. Would be a shame to shorten the time to when the conductor taps me on the shoulder and says, "Next stop".

janebob99 profile image
janebob99 in reply toJohnInTheMiddle

Hi John.

(I lost my post. Will repeat it here...)

If you don't mind me say, I think you may have a mild case of "analysis paralysis" (which I can appreciate).

Of the 100+ papers that I have collected and read about transdermal estradiol treatment, only 1 postulated a negative effect of estradiol on PCa. All of the others reported a protective effect.

The recent PATCH-III study found that 91% of men with advanced prostate cancer (but no metastasis) were still alive after 3 years when taking high-dose estradiol monotherapy, and without using any Lupron or Lupron-like ADT. There was no increase in adverse cardiovascular effects. Hot flashes were decreased by 50% compared to Lupron ADT. But, gynecomastia was increased with E2 ADT.

annalsofoncology.org/action...

I'm currently taking high-dose estradiol and my PSA is down to 0.08. (Note: I'm also taking Orgovyx, for full-disclosure. I also have had SBRT. So, they are all working together to reduce PSA to a very low level (Triple Therapy). I don't have any hot flashes, and I'm going to get my DEXA scan done soon. My most recent E2 was 497 pg/ml, which is too high. I'm going to reduce my dose of E2 to get that down to about 300 pg/ml. I don't have some enlarged breasts, which I don't mind. They are somewhat painful when pushed on, which I don't like. But, my E2 level is too high right now.

Which side effect of ADT are you most concerned about? Hot flashes? Osteoporosis? Increased glucose? Increased bad lipids? Fatigue?

Bob

PATCH-III results
janebob99 profile image
janebob99 in reply toJohnInTheMiddle

I thought of two other factors:

There are two psychological biases towards choosing drugs that are: (1) new (and, hence, “improved), and (2) the belief that "if big Pharma makes it, then it must be really good."

By the way, I am collaborating with Prof. Wassersug on a manuscript about transdermal estradiol. Stay tuned...

PELHA profile image
PELHA in reply toJohnInTheMiddle

Thanks to janebob husband is on this but we had to get scrip from his urologist who also does Biote TRT as the MOs would not. This is also where we have to go for blood tests to monitor estradiol levels. And even then he’d never done it before. I sent him some related studies that he appreciated.

janebob99 profile image
janebob99 in reply toPELHA

I lost my post...

What are you husband's most recent PSA, T, and E2 levels?

PELHA profile image
PELHA in reply tojanebob99

In mid-July PSA down to .77. Total T 12. Estradiol 33.2. Blood draw at urologist

Mid-August Estradiol 103.4 (done with a comprehensive blood draw at MO office that did not include PSA or T— the MO added Estradiol at my request.)

He just had another blood draw from urologist for PSA, T and Estradiol so we will have updated numbers in about another week.

His PSA has never been over 10 yet he developed the bone Mets. The first estradiol reading at 33 was after being in patches for a month.

janebob99 profile image
janebob99 in reply toPELHA

Excellent numbers! The E2 is sufficiently high to prevent hot flashes. What is somewhat unknown is how high E2 has to be to prevent osteoporosis and grow bone. The data that shows bone growth is from the PATCH study, which reached serum E2 levels of 200-300 pg/ml. So, you might need more E2 than 100 to grow bone. There is also data from PM women, that shows 100 pg/ml is sufficient to grow bone. The real answer is probably somewhere in-between those two numbers. For severe osteoporosis, I recommend doubling you dose of estradiol.

Is he taking gel or using patches for estradiol?

PELHA profile image
PELHA in reply tojanebob99

He has .1mg patches changed twice per week. Mylan brand. Yes I hope his latest numbers will be a bit higher. Will keep you posted.

janebob99 profile image
janebob99 in reply toPELHA

Wonderful!

The best places to apply the patch are the upper buttocks or upper outer hips. Not the abdomen or thighs, which have more fat under the skin.

PELHA profile image
PELHA in reply tojanebob99

Yep that’s what we do. Rotating cheeks!!

ELOfan profile image
ELOfan in reply tojanebob99

JaneBob, Interesting idea, I will ask the Oncologist at my chemo appt.

janebob99 profile image
janebob99 in reply toELOfan

Give your MO a copy of this recent Abstract from ESMO, Sept. 2024.

annalsofoncology.org/action...

PATCH-III RESULTS
Professorgary profile image
Professorgary

It’s odd that Drs. Want you to take calcium and vitamin D but no magnesium. Without magnesium calcium is actually harmful because it can calcify the arteries. For every 2mg of calcium your body needs 1mg of magnesium. I suggest you google magnesium and prostate cancer. Also nearly 60% of Americans are magnesium deficient. God bless.

mababa profile image
mababa

Elofan, I’ve just started the regimen of calcium supp. My last MO, after looking at my Dexa scan, was emphatic when he said I needed to start on 1200 mg of calcium plus D3. Said the D3 also helps with absorbing the calcium. He specified “Caltrate” with D3. So I bought the 600 mg tablets (horse pills) from Walgreens. I also bought some gummies thinking they may be easier to consume. But they work out to cost more than double that of the tablets. And like you said, who needs all that sugar. I take one in the morning and one at night with or without food. With everything else I’m taking, I have no idea if there are side effects. If my bone density improves with my next dexa scan, I’ll be a believer.

j-o-h-n profile image
j-o-h-n

Hello ELO, (Echo).

I wonder if just licking sunlight would suffice....

Good Luck, Good Health and Good Humor.

j-o-h-n

ELOfan profile image
ELOfan in reply toj-o-h-n

j-o-h-n 😅🌄🌞🌅

MrG68 profile image
MrG68

Well the main issue with D3 supplementation, as I see it, is that its not sulphated.

When your body creates D3 from sunlight it sulphates it. A supplement doesn't.

From what I've read, the sulphation makes the D3 water soluble and so more effective. Otherwise it will remain fat soluble. Also, your cholesterol will be suphated with sunlight which is also a good thing...but a different topic. So in effect you could read a lower concentration in your blood, but its a better quality.

I think its probably a good idea to get your levels up if they're deficient using a supplement. But then use a healthlamp to allow your body to create it... assuming of course you don't live in a region of low latitude where you'll get more sunshine. Obviously sun exposure is the best.

Your body will regulate the levels of D3 if you do this. With a supplement, you bypass this.

Hope that helps.

ELOfan profile image
ELOfan in reply toMrG68

MrG68, Thank you for sharing that I didn't know about sulphated and it makes sense that QUALITY matters. Agreed and we do walk outside in the SUN every day that we can.

Maxone73 profile image
Maxone73

Ah, there are also water solubile D3 formulations

MrG68 profile image
MrG68 in reply toMaxone73

Which brands? Is the supplement soluble in water or is the actual D3 hormone water soluble?

Maxone73 profile image
Maxone73 in reply toMrG68

I don’t remember but try to search for water soluble vitamin d3 on google or Amazon. D3 is fat soluble normally

MrG68 profile image
MrG68 in reply toMaxone73

Yeah, I could be wrong but I think the D3 itself is still fat soluble. For example you could have liposomal D3 which will absorb better than non liposomal.If i remember right, when you suphate it, the sulfation process changes the structure to make it water soluble by adding on hydrophilic parts.

Again, if i remember right, cholesterol sulfation will do the same thing which should bring down your ldl cholesterol because now it no longer needs the lipoprotein to transport since it's water soluble.... since less ldl is used to transport the cholesterol because its also hydrophilic.

SCreader profile image
SCreader

NOW Foods Supplements, Calcium Hydroxyapatite Caps, Supports Bone Health*, 120 Capsules - I don't think anyone has mentioned this brand and type of calcium.

ELOfan profile image
ELOfan in reply toSCreader

SCreader, Interesting I'm not familiar with that Hydroxyapatite.

ELOfan profile image
ELOfan

I bought Kirkland band Calcium Citrate w Mag, Zinc and D3 and I take one after breakfast and another after either lunch or dinner to spread out the calcium. Also I hope to absorb some calcium from real food so I eat before taking the calcium. Some days I eat some cheese or greek yogurt and steamed organic lacinato/dinosaur-kale.

ChrisNZ profile image
ChrisNZ

for what it is worth.... I was prescribed colecalciferol 1.25 mg capsule once a month (3 tablets)

r.search.yahoo.com/_ylt=Awr...

JobViktor profile image
JobViktor

I am a Pca survivor for more 3 yrs and I've been taking high dose of Vit D 10K iU together with Vit K about 100-200Mcg consumed with Extra virgin oil daily. VitD is soluable with fat so best to take it with fat. I also take Zinc, calcium, Magnesium 500mg, high lycopine such as baked tomatoes, Water melon as well as grapes, lemon, apple etc. I take legumen, purple sweet potatoes and whole grains for my breakfast. My prayer go to all cancer survivors. GOD BLESS...

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