Lynparza - are B12 supplements ok for... - Advanced Prostate...

Advanced Prostate Cancer

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Lynparza - are B12 supplements ok for red blood cell deficiency?

Ian99 profile image
22 Replies

I have been on Lynparza since June 1, 2024. Had to lower dosage after 3 months to reduce SEs, especially constant fatigue.

Point of this post is supplements. My bone and liver profiles are both ok. But red blood cells are down (Hg) and MCV too high, despite iron in diet. Am considering B12 supplements. I agree with the general need to prefer getting nutrients from diet, but would nevertheless appreciate any comments or suggested alternatives on this case.

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Ian99
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22 Replies
SpencerBoy11 profile image
SpencerBoy11

lan99, not to worry too much, but a concern. After my radiation, I had a similar situation. Finally my PCP referred me to a hemotologist who did a bone marrow biopsy. Bad news. It was myelodysplastic syndromes with ring sideroblasts (MDS-RS). It is a blood cancer caused by the radiation. It is rare, but I feel way underdiagnoised considering all the co-morbidities we have. Google it.

Ian99 profile image
Ian99 in reply toSpencerBoy11

Thanks. I googled it, is indeed worrying. Not ready for bone marrow biopsy yet but will keep this scenario in mind.

tarzantass profile image
tarzantass in reply toSpencerBoy11

Hello! What kind of radiation that caused blood cancer? Radium 223?

SpencerBoy11 profile image
SpencerBoy11 in reply totarzantass

Don't know the answer to your question, but mine was from my SBRT sessions. I would think that any kind of radiation or chemotherapy could cause it. Again, it is rare, but all of us need to know everything we can about this beast.

mrscruffy profile image
mrscruffy

Been on Lynparza since December 2023. I am currently on half dose until blood work next week. I too suffer from low blood cell count. I have done B12 injections twice a week since February. Doesnt seem to help me. But, may be worth a try

Ian99 profile image
Ian99 in reply tomrscruffy

Given TA’s comment below, it looks like a long shot. Not sure what else to try, will keep on digging.

Tall_Allen profile image
Tall_Allen

B12 probably won't help. PARP inhibitors interrupt the biochemical mechanism that creates new red blood cells.

Ian99 profile image
Ian99 in reply toTall_Allen

Thanks TA. I have the impression it is still early days for Lynparza. Hopefully a more targeted version will be available before long.

KocoPr profile image
KocoPr

TA is there a reason to continue PARPi if it is interrupting bone marrow production? It seems counter intuitive since one will certainly need their bone marrow to produce immune cells.

Tall_Allen profile image
Tall_Allen in reply toKocoPr

It has proven to extend survival if men are BRCA+.

Poweredparaglider profile image
Poweredparaglider in reply toTall_Allen

My original testing showed no actionable mutations. After castrate resistance, additional testing showed I had acquired BRCA, BRCA2, and ATM. MO was encouraged and started me on Lynparza. I had no blood work side effects; but had some leg cramping and fatigue. Drug is completely ineffective for me, discontinuing and moving on. Her best guess is because they are acquired mutations. Best of luck to others, there is a lot of hope to these drugs.

Ian99 profile image
Ian99 in reply toPoweredparaglider

Interesting. Mine is acquired. This is the first I hear of a possible difference in the effectiveness of the drug in this context.

Tall_Allen profile image
Tall_Allen in reply toPoweredparaglider

In trials, half were innate, half acquired. It worked equally well in both. Perhaps the new generation of PARP inhibitors will work better for you, like Module 5 of the trial below:

clinicaltrials.gov/study/NC...

EdBar profile image
EdBar

My oncologist, Dr. Sartor at Mayo warns against B12, he says prostate cancer loves it.

Ed

Ian99 profile image
Ian99 in reply toEdBar

Many thanks! You and TA have convinced me to back off this idea.

Apd66 profile image
Apd66 in reply toEdBar

never heard of the connection between b12 and prostate cancers loving it. Any background info on this subject. I too recently started on lymparza. Psa is dropping steadily since starting but I too see my blood counts dropping as well. I’ve been taking a b complex vitamin and zinc supplements but still see the same side effects. I’ve only been on for 2 months and was hoping the side effects level out a bit. Would love to hear of others experiences with this drug in longer term use. Anybody out there?

EdBar profile image
EdBar in reply toApd66

No background info, if Sartor tells me not to take it I listen, he is among the top PCa docs in the country.

Ed

Ian99 profile image
Ian99 in reply toApd66

I did the first 3 months at full dosage 600mg/day. I was in bed by the end but the PSA dropped 61 to 47. I had to reduce dosage to 400 then 200 before I got some relief. Am unlikely to be getting much benefit from 200/day so need to ramp this up to a level I can tolerate while still getting benefit.

What dosage are you on ?

Apd66 profile image
Apd66

My PSA was 26. Started on lymparza and was blood tested every week for first 4 weeks. It started to drop in week 4. Today at week 8 PSA is 16.4. Dosage is 400 mg / day. Had a tough time at first with se but has kinda eased up for me. Still fatigue and sweats. Blood work , particularly wbc and rbc counts are low and continue to fall. Anemia is my concern now. I feel good, exercising and eating well. Looking for something in the immunotherapy line that could work for me while I ride this wave. Just had biopsy done. Awaiting results from pathology.

Ian99 profile image
Ian99 in reply toApd66

I hope to get dosage back up to 400. No way for 600, I had to stop gym and golf. I have the same concern as you re blood counts.. red and white both dropping but stabilising since lower dosage. Seems there is no easy fix. Need to restart physical activity to build resistance.

fast_eddie profile image
fast_eddie

I am stuck taking omeprazole, a stomach acid reducer, for GERD/reflux. For this reason I take B12 supplement sublingually.

tarzantass profile image
tarzantass

Lynparza can be used for treatment when there’s DNA damage. How about without the DNA damage?

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