Vit B12 extremely high

[rsgdmd]

So, I have stage 4 de novo prostate CA. On Lupron, in between 5th & 6th docetaxel chemo. Had to stop abiraterone due to elevated bilirubin & will try restarting after chemo is over.

Recently diagnosed with MGUS (Monoclonal gammopathy of undetermined significance) which is unrelated to the prostate. About 5% of people have this at age 60, though few know. 1%/year move on to multiple myeloma, which (interestingly) has rather similar symptoms to prostate cancer and ADT. My numbers aren't too high so this probably is not an issue.

But, real question, on recent blood work, my vit B12 level was >2000 pg/ml. Normal level is 232-1245 and back in June I was 342. Possibly due to chemo? My liver numbers are all fine and I get B12 from multivitamin which has 250% of RDA and food.

Any thoughts?

[noahware]

My thought is, do not supplement with B12. Some on the forum have suggested shooting for levels on the low side of "sufficiency" (bordering on "insufficiency") due to a possible association of PC progression with higher levels of B12 and/or folate. Unless one is vegan, the average person should easily get all the B12 ever needed from eating a varied whole-food diet.

One might ask, are the high serum levels actually arising from the modest supplementation alone? I read in one online discussion that a person may have excessive serum B12 for reasons that include:

- excessive intake of B12-rich foods and over-supplementation

- liberation of an internal reservoir (where the body releases too much of the B12 it has been storing

- an increase in TCB ( transcobalamins, which are carrier proteins responsible for delivery of B12 to the body’s cells)

- having certain cancers

- liver disease or a damaged liver

- kidney disease

- hypereosinophilic syndrome ( too many white blood cells)

So it would seem that your high levels might have multiple contributing causes, and I would certainly think chemo could be one of them, given the stresses it puts on organs and on the body in general. Not sure if there is real cause for worry, but skipping the extra B12 in pill form seems like a good start.

[Tall_Allen]

What does your oncologist say about it? Unless you have a known deficiency, there is no reason to take multivitamins.

[Benkaymel in reply to Tall_Allen]

You are right T_A, but when Dx'd with PCa, due to shock/panic, there's a strong tendency to go into supplement overdrive thinking I must be deficient and that's why I've contracted this awful disease. I did this but now I've calmed down and focus a few important supplements. As you say - go by your test results and only boost deficiencies.

[Tall_Allen in reply to Benkaymel]

I hear ya. I have a drawer full of 12-year old supplements I bought when I was first diagnosed.

[rsgdmd in reply to Tall_Allen]

Only taking CVS brand multivitamin, Ca & vit D and vit B6 (for peripheral neuropathy as per MO). Haven't talked to oncologist as lab results showed up late Fri. but am stopping the multivitamin.

[Tall_Allen in reply to rsgdmd]

Ca may be harmful unless blood levels are low.

[Lslal in reply to Tall_Allen]

Does Ca mean calcium, because my oncologist told me to take 1000 mg a day

[rsgdmd in reply to Lslal]

Yes, Ca is calcium. CA is often short for cancer.

[Tall_Allen in reply to Lslal]

Are you calcium-deficient? If so, you need to supplement. If not, excess calcium is harmful.

[rsgdmd in reply to Tall_Allen]

Even with supplements, my Ca ranges from low to just within low end of normal range (8.4 - 9)

[Tall_Allen in reply to rsgdmd]

And without supplements what was it?

[rsgdmd in reply to Tall_Allen]

Closer to 8. With starting Xgeva, they wanted me higher

[Tall_Allen in reply to rsgdmd]

Try foods like sardines,and other fish with small bones.Also, make sure your plasma Vitamin D is over 20 ng/ml.

[rsgdmd]

My Ca is a little low plus I'm on denosumab. Had osteopenia at time of diagnosis, mets on 6 different bones and ADT (most likely) for life.

[Seasid in reply to rsgdmd]

I am not a doctor just wondering if you are still in a hspc phase your mets should be healing and I am really wondering would denosumab stop the healing of your Bone Mets?

I realized that you are good in digging up information that is why I am asking you.

In which hospital are you seeing your MO? Could you ask him why did he prescribed to you denosumab? What is your bone density?

I am asking this as some former patient of the American oncologist dr "Snuffy" Mayer said that his MO said that the bone straightening medication would stop the healing of your Bone Mets if used during the HSPC phase of your prostate cancer when the mets are still healing.

[rsgdmd in reply to Seasid]

I'm recently castrate resistant. I don't think denisumab would stop healing of mets. It is indicated just for that as it inhibits osteoclastic activity. Most of my mets are sclerotic, but the bone, while denser, is not as strong. Denisumab is to help keep osteopenia from becoming osteoporosis. Also has been shown to reduce fractures. I'm at U if PA. My MO authorized Prolia but the insurance would only cover Xgeva, as it is indicated for bone mets.

[Seasid in reply to rsgdmd]

I am just a messenger not a doctor. If you are castrate resistant than Xgeva is appropriate for you.

When did you turn castrate resistant and could you say what is your PSA and do you have visible Mets on the PSMA pet scan?

I had only cancer in my prostate visible and we irradiated it and now no visible cancer. (Low volume.)

My PSA last was 0.25 and I had the MRI of my brain and c-spine and there was nothing to see except that my brain is mildly suffering from my sleep apnea and it is visible on the MRI but no cancer detected.

[Seasid in reply to Seasid]

I had end of last year the PSMA, FDG, CT and bone scan. No visible Mets only 14 SUV max on the PSMA pet scan and 95% of my prostate full of cancer that is why it was irradiated with 38 Gy in 5 fraction with MRI Linac.

I started again crestor after drug holiday and hope that the PSA will hopefully drop again. I am only on Degarelix injection 8 months after I irradiated my prostate.

I was diagnosed as polimetastatic in 2018 and started Degarelix and early chemotherapy. Then my PSA started to rise after a nadir of 0.12 to 1.25 then I had a PSMA pet scan and all the other scans an at PSA 1.4 I irradiated my prostate. And now last PSA is 0.25.

[rsgdmd in reply to Seasid]

MO felt I was castrate resistant as of June, when my PSA went above 2. PSMA scan showed about 12 boney nets, but nothing in lymph nodes or organs. Previous CT and bone scans showed 9-10 boney mets, so have a couple too small for those scans to have shown.

[Seasid in reply to rsgdmd]

What was the SUV max value of your cancer in your prostate on the PSMA PET scan?

What was the SUV max values of your on the PSMA PET scan visible mets?

[Seasid in reply to Seasid]

I think he said that you are CRPC because your PSA is now above 2?

In my situation even if my prostate would show PSA above 2 and no visible mets I would again just SBRT my prostate and kill the CRPC in my prostate and I would become hormone sensitive again.

PSA 2 value is not a Zener diode, there is more than that.

I was considering myself castrate resistant when my PSA doubling time was 2 months, but than we found a source and killed the CRPC with radiation and I am hormone sensitive again. Last PSA was 0.25.

Hormone sensitive also could mean that the ADT is effective and the cancer is not advancing radiologically nor by producing more PSA. I am also testing LDH as it looks that rising LDH also could indicate that your cancer is advancing even if there is no increase in a PSA and your scans are clear. You could have neuro endocrine prostate cancer which is not producing PSA.

If your PSA is advancing but your scans are clear than you could have lots of micro mets, or to be more precise lots of cancer in your body under 5 mm which you could not detect with scans.

PSA 2 don't mean always that you are in trouble, but you should find a source if your PSA doubling time is rapid.

[rsgdmd in reply to Seasid]

Scans aren't clear. I have a dozen mets in various bones.

[Seasid in reply to rsgdmd]

What is the PSA doubling time and what is your last PSA? You could test your PSA monthly. You obviously need an effective global treatment. Hope you have good doctors and they will advice you properly.

[Seasid in reply to rsgdmd]

I hope that keytruda is helping you. I just looked at your profile.

[rsgdmd in reply to Seasid]

Thanks. Me to.

[Derf4223 in reply to Seasid]

I like your Zener diode reference, but then again I'm an EE. Your post is the first I have seen that said MDT (metastasis-directed radiation therapy) of a CRPC tumor can lead to reversion to CSPC status. I hope that works out for you. You are very fortunate it was caught.

[Seasid in reply to Derf4223]

My PSA started to rise from 0.25 to 1.5 with a psa doubling rate of less than 3 months.

The visible cancer on all scans was only in my prostate.

Therefore we made a decision to irradiate it.

I didn't have any visible Mets to radiate. Therefore we can't really talk about MDT.

We did radiate the mother ship. There was the cancer producing PSA and visible on the psma, fdg scans.

I realized by reading the profiles of our members here on HU that the cancer in the prostate after some time stops responding to every global treatment. Therefore it made sense to irradiate it and to stay on Degarelix injection alone and to save the more advanced treatments for the future as we all know all global treatments fail at some point of time as the prostate cancer finds a way around every global treatment.

The other thing is that if you want to try BAT (which is seldomly effective for every one for a long time) it is much better if you permanently get rid of the cancer in your prostate.

Last but not least, even if irradiating my prostate will not extend my life I will be happy to stop a local spread of my CRPC to my rectum etc. Et least that is our hope.

If I would have to do MDT than I would add something like let say Abiraterone plus prednisolone.

All of these treatment is happening with the agreement of my MO, my RO and me and my last PSA is 0.25 8 months after irradiating my prostate. The PSA dropped from 1.5 to 1.4 just before the radiation and now is 0.25.