Dr said Good news Bad news

Posted by tallbob @tallbob, Jan 24 10:54pm

Very quick history,

2009 October PSA 9 two biopsy's no cancer.
2009 December PSA 20. Biopsy Gleason 6
2010 January robotic surgery, upgrade to Gleason 4x4. Dr said cured, no further treatment needed??? PSA < .04 until 2021
2022 October PSA going up, 33 radiation treatments to prostate bed.
2024 June PSA .37 PSMA CT scan showed two hot lymph nodes above the bladder.
2024 July 5 radiation treatments to lymph nodes. three month PSA .24 Doubling time about 5 months.
2024 new Dr wanted PSA to be in 2.0 range for best scan results.
2026 January PSA 2.26, scan shows no sign of cancer?

Good news, no cancer in suspected in the very hard to treat area, bad news scan shows no cancer anywhere. Dr thinking cancer is in several locations and too small to show up on a scan. Would have preferred a couple larger spots to hit with radiation.

Dr had several suggestions, main one starting ADT. Had Lupron in the past and was not a happy time.
Any thoughts, suggestions or personal experience's?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for kujhawk1978 @kujhawk1978

@jeffmarc

Not taking issue with your statement..."It is a fact that ADT weaken your bones."

Nor that "My doctors specifically recommended, calcium, and vitamin D to help offset that." again, not the issue.

I do not dispute "The longer you are on ADT the more important it becomes."

What I am saying is the time periods I have been on it, 18, then 12, months, have not required me to be on D3 and Calcium. In part, maybe because I do resistance training almost every day. My diet generally provides what I need...

Maybe were I to be on ADT continuously, longer, perhaps the need for supplements would come in play.

I did have Dexa scans, no issues other than being old and the usual arthritis here and there..

I think you may not be focusing on my issue, automatically telling us to take supplements without assessing where we are and a plan to monitor throughout the duration of our treatment.

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@kujhawk1978 I see your point about watching your blood tests to see what supplements an individual may need rather than just using a blanket statement. But in the case of ADT beyond a period of 6 months, I think is fair to say that every patient will need some amount of calcium and D3 supplementation to keep their blood calcium level in the normal range which helps keep their bones strong. I know for me on ADT for one year, that I needed a minimum of 1000 mg of calcium to stay normal from blood tests every three months. If I even went down to 750 mg of calcium, my calcium blood level went below normal. A patient with more dietary calcium would need less than 1000 mg of supplement, but from anecdotal conversations with other patients and the research I read, I think it is safe to say that every ADT patient needs some level of calcium and D3 supplementation specific to them.

I did this same experiment with iron supplementation because ADT lowers red blood cell counts, hemoglobin and hematocrit levels towards becoming anemic. I had to carefully keep increasing my iron supplementation to get those levels in normal ranges. ADT and radiation to the pelvic area affects these counts and the patient only has iron supplements to help bring them up. This has to be done very carefully because too much iron supplementation becomes toxic. But just like with calcium and D3 supplementation, I think it is safe to say that every patient using ADT beyond six months will benefit with some level of iron supplementation specific to them.

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Profile picture for wwsmith @wwsmith

@kujhawk1978 I see your point about watching your blood tests to see what supplements an individual may need rather than just using a blanket statement. But in the case of ADT beyond a period of 6 months, I think is fair to say that every patient will need some amount of calcium and D3 supplementation to keep their blood calcium level in the normal range which helps keep their bones strong. I know for me on ADT for one year, that I needed a minimum of 1000 mg of calcium to stay normal from blood tests every three months. If I even went down to 750 mg of calcium, my calcium blood level went below normal. A patient with more dietary calcium would need less than 1000 mg of supplement, but from anecdotal conversations with other patients and the research I read, I think it is safe to say that every ADT patient needs some level of calcium and D3 supplementation specific to them.

I did this same experiment with iron supplementation because ADT lowers red blood cell counts, hemoglobin and hematocrit levels towards becoming anemic. I had to carefully keep increasing my iron supplementation to get those levels in normal ranges. ADT and radiation to the pelvic area affects these counts and the patient only has iron supplements to help bring them up. This has to be done very carefully because too much iron supplementation becomes toxic. But just like with calcium and D3 supplementation, I think it is safe to say that every patient using ADT beyond six months will benefit with some level of iron supplementation specific to them.

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@wwsmith

We agree...

Albeit..."every patient will need some amount of calcium and D3 supplementation to keep their blood calcium level in the normal range..." maybe say patients undergoing systemic ADT therapy should discuss with their medical team how together, they will determine the need, duration, dosage and any adjustments for any supplements" as a result of the treatment...

Same for this..."every ADT patient needs some level of calcium and D3 supplementation specific to them." ADFT patients should consult with their medical team on the need, dosage, duration and monitoring..."

Ditto this..."every patient using ADT beyond six months will benefit with some level of iron supplementation specific to them.

Kevin

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Profile picture for kujhawk1978 @kujhawk1978

@wwsmith

We agree...

Albeit..."every patient will need some amount of calcium and D3 supplementation to keep their blood calcium level in the normal range..." maybe say patients undergoing systemic ADT therapy should discuss with their medical team how together, they will determine the need, duration, dosage and any adjustments for any supplements" as a result of the treatment...

Same for this..."every ADT patient needs some level of calcium and D3 supplementation specific to them." ADFT patients should consult with their medical team on the need, dosage, duration and monitoring..."

Ditto this..."every patient using ADT beyond six months will benefit with some level of iron supplementation specific to them.

Kevin

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@kujhawk1978
The need for calcium is quite easy to find out you just get a blood test for it. I had a problem getting my calcium up and have to take 500 mg three times a day to be in the normal range. Since calcium has vitamin D may not even need to take more.

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Profile picture for acoope @acoope

@jeffmarc I did research online concerning the loosening of teeth and yes it can happen with long term ADT. It has never been suggested that I take any type of bone supplement during over 7 years of ADT. This has happened in the last 6 months and includes all teeth and before they were very healthy. I know it can’t be proven but it’s a good possibility. I’ve talked to MD Anderson and Humane today and hopefully they can accept me as a patient. I have really great doctors here but their tools are somewhat limited. As you can see from the velocity rate in the PSA time is a factor. Thank you Jeff. The only thing they have offered at this point is to get more Lupron

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@acoope I was a dentist and I must say, even in the most severe cases of osteoporosis (all female patients) I rarely, if ever saw it affect teeth to such a large degree.
Yes, there was some horizontal bone loss but not to the level of loosening or losing teeth.
However, I would bet that osteoporosis in men - induced by long term ADT - is quite different than that of women. If you really want to get in the weeds biochemically I am sure the mechanisms of action on the jawbone are quite destructive.
But please consult with your dentist/periodontist and make certain that there is no periodontitis or generalized gum infection in your mouth.
Doxycycline hyclate 20mgs (Periostat) twice per day really inhibits connective tissue and bone destruction in the mouth. Please ask about this as well. Best,
Phil

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Profile picture for heavyphil @heavyphil

@acoope I was a dentist and I must say, even in the most severe cases of osteoporosis (all female patients) I rarely, if ever saw it affect teeth to such a large degree.
Yes, there was some horizontal bone loss but not to the level of loosening or losing teeth.
However, I would bet that osteoporosis in men - induced by long term ADT - is quite different than that of women. If you really want to get in the weeds biochemically I am sure the mechanisms of action on the jawbone are quite destructive.
But please consult with your dentist/periodontist and make certain that there is no periodontitis or generalized gum infection in your mouth.
Doxycycline hyclate 20mgs (Periostat) twice per day really inhibits connective tissue and bone destruction in the mouth. Please ask about this as well. Best,
Phil

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@heavyphil thanks Phil for your response. My dentist has checked for any type of disease and found none. He was puzzled about how my bite seemed to be changing in form and said everything was moving. I suspected that it was a bone issue of some sort and through google found some evidence that this was a possibility but I wasn’t claiming that ADT was solely responsible so I guess my statement was misleading. Thanks

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Profile picture for acoope @acoope

@heavyphil thanks Phil for your response. My dentist has checked for any type of disease and found none. He was puzzled about how my bite seemed to be changing in form and said everything was moving. I suspected that it was a bone issue of some sort and through google found some evidence that this was a possibility but I wasn’t claiming that ADT was solely responsible so I guess my statement was misleading. Thanks

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@acoope
You are a perfect case where bone strengtheners should’ve been used. I was put on bone strengtheners as soon as I got on ADT, I took Fosamax pills weekly for six years And then switched over to Zometa infusions.

There is a very slight risk of osteonecrosis with the drugs, but they normally keep your bones, very strong.

You might talk to your doctor about this. It may be too late for your teeth, but a DEXA scan should show whether or not your bones needed it.

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Profile picture for jeff Marchi @jeffmarc

@acoope
You are a perfect case where bone strengtheners should’ve been used. I was put on bone strengtheners as soon as I got on ADT, I took Fosamax pills weekly for six years And then switched over to Zometa infusions.

There is a very slight risk of osteonecrosis with the drugs, but they normally keep your bones, very strong.

You might talk to your doctor about this. It may be too late for your teeth, but a DEXA scan should show whether or not your bones needed it.

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@jeffmarc bone strengthened have never been mentioned to me thus far. I just messaged Phil and told him it looks like I’m on the verge of being covered at MDA for clinicals.

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