2 Questions

[revchris77]

Background: 45 yo, athletic with no comorbidities. Gleason 9, metastatic with 5 bone mets, node mets, and BRCA2. No surgeries or radiation.

I’ve been on ADT since Jan 30, 2023. 

PSA at time of first Firmagon shot was 78. one month later it at 2nd shot it was 5.

On Mar 1, 2023 it was 1.5. started Zytiga on Mar 5th.

PSA on Mar 23 was .9 when I received my first Lupron 3 month shot. I did have a significant testosterone flair right after the shot. I was also taken off Zytiga because my liver enzymes were too high for my MO. 

PSA on April 17 with just Lupron was .7. 

I started Xtandi on April 15th.

My PSA on May 14th was still .7. My MO said this was likely my nadir. I’m not sure if radiation will be approved with a .7 PSA.

I’ve received the results of my 2nd PSMA PET scan yesterday. I have depletion of cancer in one large bone met in my hip, and prostate. 2 smaller bone mets and a couple abdominal lymph nodes are no longer registering on the scan. Some other abdominal nodes and 5 other bone mets show no change. 

Questions: Can .7 really be my nadir as my MO suspects?

Should I switch back to Firmagon to avoid another flair (considering my first Lupron flair while on doublet treatment)? 

Your comments are welcome. 

[Gym-rat]

revchris77 my situation is very similar to yours (see my bio). I’m on Lupron, Zytiga, Prednisone. After 4 months of starting ADT my PSA remains at 0.2 for two months. My MO never mentioned nadir at this point. The last lab results showed it went down to 0.1

I picked up a tip from this forum and started taking the Zytiga around midnight when I get up for a bathroom trip. This ensures I take it on an empty stomach as directed. I was taking it first thing in the morning, but was not waiting one hour to eat something. Not sure if this really made an impact on effectiveness of the drug. But it was an easy switch.

I have the pill bottle right side up before bed and turn it upside down after taking it. There was one morning early on when I could not remember if I took it or not. I also have a note by my clock to “take pills” as a reminder in the middle of the night.

[Skippy3 in reply to Gym-rat]

My doctor, Dr Sartor of Mayo Clinic in Rochester MN says take Zytiga, (Abiraterone) with food. He said it’s better absorbed by the body. He told me that twice. I take it in the morning right after breakfast. I think the no food requirement was how the trial was set up to minimize variables. More recent info says take with food.

[Gym-rat in reply to Skippy3]

Skippy3 I also heard recommendations to take Zytiga with food for this reason. It would be good to get clarification on this. I must believe that most of us are taking as directed on the label.

[pakb in reply to Gym-rat]

Taking zytiga with food increases the amount absorbed. Which isn't always a good thing. It can increase side effects, give you too much, etc.. Some doctors lower the dosage so that men can take it with food if that's what that particular patient needs. It's a conversation with your doctor to look at what your cancer needs.

[katartizo61 in reply to Skippy3]

I assume you take 1000 mg a day with food??? I have read others cut the dose

[Skippy3 in reply to katartizo61]

Yes, I take 1000 mg with food. I see the doctor in July. I will try and clarify whether dose should be less.

[katartizo61 in reply to Skippy3]

Thanks, I will change to with food beginning tomorrow!! Let me know what your doc says

[Hidden in reply to katartizo61]

Do not do that unless your MO advises it. I was told empty stomach.

There have been tests done taking Zytiga with food, but only 250mg.

That was a cost saving idea, but its now generic, and moot.

[Skippy3 in reply to katartizo61]

I asked Dr Sartor about taking Zytiga with food and that some doctors recommended lowering the dose to 750. I'm paraphrasing. He said Zytiga is what is keeping me alive and that any negative ramifications of higher absorption with food don't justify lowering the dose. My blood test indicated PSA lower <0.01 which the Dr considers undetectable. Hard to argue with that. I'm doing everything else I can to counter the negative effects of this therapy. 🙂

[katartizo61 in reply to Skippy3]

Thank you!!! I submitted a letter 2 weeks prior to my MO visit with options to stay on Albiterone and he did not open it even with me asking his staff to show this to him asap. I am on Xtandi,,,,,,,darn. Hoping all the best for you

[Skippy3 in reply to katartizo61]

I've had the same experience with docs. They are not familiar with Healthunlocked.com and don't want to be. They will humor your inciteful comments but then cut you off and go on to something else. Keep in touch.

[katartizo61 in reply to Skippy3]

Thanks Skippy3 sometimes I hate reality Kat

[Hidden in reply to Skippy3]

Abiraterone, approved in 2011 for the treatment of metastatic prostate cancer, has a "food effect" that is greater than any other marketed drug. The amount of abiraterone that gets absorbed and enters the blood stream can be multiplied four or five times if the drug is swallowed with a low-fat meal (7 percent fat, about 300 calories). That can increase to 10 times with a high-fat meal (57 percent fat, 825 calories).

[katartizo61 in reply to Hidden]

Thank you....wow 4 to 5 times crazy as to why it's not regularly prescribed with food???

[Gym-rat in reply to Hidden]

I was taking the 1000 mg on an empty stomach. Was called yesterday by the MO and told to stop taking it for 2 weeks since liver enzymes have spiked. He said he will start me again at 750 mg dosage in 2 weeks after checking lab tests again.

[PSAed]

Hi revchris77, regarding the testosterone flare, I was on ADT ( LUPRON) for 2 years....now completed...but I was also on Casodex (bicalutamide) for about two weeks . I think the Casodex was to prevent testosterone flare caused by LURON but i could be mistaken. Hopefully wiser heads than mine will come along and address the flare issue in detail for you. Best Wishes

[dhccpa in reply to PSAed]

You're right. Casodex (bicalutimide prevents the flare).

[lespaul123]

Adding Casodex may help the cause - All the best my friend -

[Benkaymel]

You should have been put on bicalutamide (casodex) for a couple of weeks before the first lupron shot to avoid T flare.I think it unlikely that you've reached your PSA nadir so soon. I've been on ADT + Xtandi for 10 months and mine is still slowly dropping.

You won't get another T flare - it's only at the start of treatment that this happens.

Wishing you all the best.

[Grandpa4]

the liver toxicity often goes away with time. I would restart at a lower dose watching liver closely. Mine liver tests flaired initially on 1000 but have been normal on 750 mg and testosterone has been unmeasurable.

[AlvinSD]

I also had Gleason 9 with lymph node mets (including some distant ones) and one bone met. My PSA was at 34 when I started treatment and took six months to get to 0.2 then another three to get to <0.1. So, it’s possible it may go lower.

Have you discussed triplet therapy with your MO? Adding docetaxel Chemo as well as changing to darolutamide (from Zytega or XTandi)? I am in great health otherwise and was diagnosed at 52. When I went for second opinions, all of the doctors suggested that to me considering my otherwise great health and age: “you have an aggressive cancer, treat it aggressively”

I also had radiation to my prostate / SV, pelvic lymph nodes and my bone met about 8 weeks after finishing chemo.

[revchris77 in reply to AlvinSD]

A month ago he was talking about saving chemo for after radiation. However, this seems to be off the table in favor of a clinical trial for BRCA2.

I’m seriously considering a second opinion. Seems he is not aggressive enough.

[notso2855]

i use milk thisle to help the old liver

[dhccpa]

Were you on Prednisone with Zytiga? And did the doctor try adjusting the Prednisone dose before abandoning Zytiga? I ask because some have reported initial problems with Zytiga before getting the Prednisone dose right. But others on here can answer you more definitively. I mention it because Xtandi is much costlier if not covered by insurance.

[revchris77 in reply to dhccpa]

I was on that combo. No adjustment to the meds, just a hard stop and prescription for Xtandi.

I do have great insurance.

[Cateydid in reply to dhccpa]

I read there may be value in switching from prednisone to dexamethasone.

[dhccpa in reply to Cateydid]

Yes, I've read that as well, after the Zytiga fails initially. However, they should probably try getting both the correct (as possible) Zytiga and pred doses right first. Then as that fails, the switch you mentioned can be made. At least, that's my understanding.

[dhccpa]

Also, reading this board, especially Tall Allen's comments, can help you determine if your doctor really knows CURRENT standard of care; so many are behind the times.

[revchris77 in reply to dhccpa]

I am starting to wonder that myself. I am being treated at MD Anderson. I would think they were up on the latest and greatest.

He was talking about a BRCA2 clinical trial. But no mention of chemo just ADT to failure and then the trial. It was suspicious.

[lowT163 in reply to revchris77]

I was treated at MD Anderson in 2019 and they didn’t think much of chemotherapy at that time.

[j-o-h-n]

45yo and I'm 86 almost double your age........ so if I can do it for 22 years with older technology and meds....... you'll be able to just standing on your head....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/17/2023 6:00 PM DST