Stopping Zytiga after 6months - Advanced Prostate...

Advanced Prostate Cancer

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Stopping Zytiga after 6months

dvcarola
dvcarola

After our last checkup with our med onco last Friday, he mentioned that my husband can stop taking Zytiga if his PSA drops to below zero after 6months treatment and just continue with Eligard and Xgeva.

Brief info, my husband was diagnosed with advanced pca late June 2018 (PSA 33) with mets to bones and several lymph nodes. He had TURP procedure and took Casodex (2wks) and then started end July 2018 with Zytiga+prednisone, Eligard (every 3months) and Xgeva (monthly).

After 2months of treatment, his PSA has gone down from 33 prior to treatment to 1.68 last week. His testosterone level is now at <0.025 ng/ml.

So med onco doctor told us Friday last week that if his PSA continues to do well and goes down to below zero after 6month treatment then we can stop with Zytiga and just continue with Eligard and Xgeva injections until July 2019 (1yr from start).

My question is:

1.) Is it a good course of action to stop Zytiga once we reach below zero PSA? And then onco said to discuss later on what will be the next treatment once his PSA starts to rise again? I see a lot of posts here about continued treatment even when PSA went undetectable so Im a bit confused.

2.) Is <0.025 ng/ml testosterone level a good or a not so good yet level?

Appreciate your insights. Thanks!

48 Replies
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(1) Given that two major clinical trials proved that Zytiga has a major impact on survival, I think it is a big mistake to stop using it before resistance sets in.

(2) <0.025 ng/ml = <2.5 ng/dL = <0.09 nmol/L Anything below 20 ng/dL is excellent. The "<" tells you it is below what that lab can measure.

dvcarola
dvcarola in reply to Tall_Allen

Thanks so much Allen, i might need to look for a more aggressive med onco around here

Cynthgob
Cynthgob in reply to Tall_Allen

Husband starting zytiga. I thought I read 5 mg total per day was adequate prednisone . I hate to have him on more than he needs as he gets grumpy on prednisone .

Tall_Allen
Tall_Allen in reply to Cynthgob

The REPLACEMENT dose is 5 mg/day for newly diagnosed men, 10 mg/day for men who are castration resistant. It replaces what the Zytiga takes away, so it is not that that is making him grumpy. ADT causes mood swings - it's like menopause.

Cynthgob
Cynthgob in reply to Tall_Allen

Thank you! The information makes me feel so much better. I’m already worried about weight gain and fullness in the face. I want him to be able to stay as active as possible. He works out almost daily.

Whimpy-p
Whimpy-p in reply to Cynthgob

Working out, fantastic!

MelaniePaul
MelaniePaul in reply to Cynthgob

10 mg is the dose. Give it to him in the morning with breakfast.

Cynthgob
Cynthgob in reply to Tall_Allen

We aren’t going on the clinical trial with lynparza . We just found out he was on placebo for the ODM so taking a break from trials😥

Tall_Allen
Tall_Allen in reply to Cynthgob

One gets great care on a clinical trial - whether placebo or not.

dvcarola
dvcarola in reply to Tall_Allen

Btw, forgot to ask Allen, how long do u think my husband should continue taking Zytiga to increase OS? Should he take it until resistance sets in which could be more months or years huhu? I will discuss with MO and will consult with other MO. Thanks again!

Tall_Allen
Tall_Allen in reply to dvcarola

Of course until it stops working.

Doug47
Doug47 in reply to Tall_Allen

Tall_Allen. Your knowledge on these matters comes across extremely helpful! I just want to say to you, thank you!! I just started my Zytiga today with the pred, I will push to continue with treatment until it’s no longer working , regardless of the PSA. Again you are very well respected here with me! Thank you again!

Tall_Allen
Tall_Allen in reply to Doug47

My pleasure. Most MOs will want to see evidence of radiographic progression and not just PSA (which can be deceptive).

Haniff
Haniff in reply to Doug47

Tall_Allen

He’s a godsend 😊

Haniff

dvcarola
dvcarola in reply to Tall_Allen

Since cost is also an issue for us if we are to continue taking Zytiga, would it be ok to just take 1tablet? or 2tablets? instead of 4 and take them with breakfast? If so, how many minutes after bfast? Also, does that mean husband needs to eat same type of food everyday? He normally eats yoghurt with honey and muesli for bfast, is that ok or a high fat meal is better?

Very thankful for people like you here on this forum! Your help is very much appreciated!

Tall_Allen
Tall_Allen in reply to dvcarola

The higher the fat in the meal, the better the absorption. But I'm sure there's a lot of variance across individuals - you should only attempt this in consultation with his oncologist.

dvcarola
dvcarola in reply to Tall_Allen

Thats the problem, when I asked our MO last week re lowering the dosage of Zytiga to 2tabs instead of 4, he did not approve and he said he is more comfortable with following the dosage of 4tabs without food 😢😢😢

leswell
leswell in reply to dvcarola

Good Saturday morning to you, dvcarola. The following two sources relate to how much Zytiga to take with and without food and to the increasing use of metformin to help control blood sugar in non-diabetics, especially those with APC. Our MO (thanks, in part to me :)) now prescribes from 250 mg up to 2 grams of metformin to advanced prostate cancer patients hoping to prevent their becoming pre-diabetic while on Lupron or its equivalent. Also, I’m sending evidence that one or two tablets of Zytiga taken with food may be as effective (for a lot less money) than are four. Leswell began with four, moved to two, but is likely to be abandoning the drug since his PSA has done nothing on Zytiga but rise. We aren’t exactly in your boat but see what you think of the following:

“Low-Dose Prostate Drug Can Match Standard Dose, Cut Costs

Liam Davenport

April 18, 2018

Giving patients with metastatic castration-resistant prostate cancer (CRPC) just one quarter of the normal dose of abiraterone acetate (AA) (Zytiga, Janssen) with food achieves at least as great a reduction in prostate-specific antigen (PSA) levels as the standard dose without food, the results of a prospective, randomized trial reveal.

AA, which is a standard of care in CRPC, was administered under fasting conditions at a dose of 1000 mg during its pivotal trials, despite early clinical studies that showed that drug exposure was significantly increased when the drug was administered with food.

The study included 72 patients with CRPC. The results show that after 12 weeks, giving a quarter dose of AA with a low-fat meal was not only noninferior to the standard dose without food in terms of reducing PSA levels but also that the duration of response was comparable, all at a lower plasma concentration.

The research was published online March 28 in the Journal of Clinical Oncology and was first presented at the 2017 Genitourinary Cancers Symposium.

Relapsed MM Updates - Treatment Option Information

Read More About the Significant OS Findings for this Treatment Option.

relapsed-multiple-myeloma.com

The team writes: ‘The pharmacoeconomic implications of this study's findings are compelling.

AA has an approximate retail cost of $10,000 per month. With a median time receiving treatment of 16.5 months in metastatic CRPC, the per-patient cost savings with the LOW dosing would exceed $100,000," they say.

They add: "Given the prevalent paradigm of developing drugs with large food effects under fasting conditions, there are multiple other opportunities to lower drug costs by administration with food.’

Lead author Russell Z. Szmulewitz, MD, assistant professor of medicine at the University of Chicago, in Illinois, told Medscape Medical News, "Our trial provides crucial but not definitive data to support low-dose abiraterone with food.”

Also see the following regarding metformin for non-diabetics:

ncbi.nlm.nih.gov/pmc/articl...

Go well, Mrs. S

dvcarola
dvcarola in reply to leswell

Thanks so much for these info Mrs S! I will definitely push for Metformin and hopefully our MO will change his mind about continuing Zytiga at a lower dose with food. All the best to you and Leswell! Have a good day!

How much prednisone was husband on? How did he tolerate it? Side effects from zytiga?

dvcarola
dvcarola in reply to Cynthgob

Prednisone is 5mg taken twice daily (morning/evening 30mins after meals). We are lucky that hubby doesnt have any side effects from Zytiga altho he seems forgetful at times, not sure if its from the meds or sign of aging 😁

Cynthgob
Cynthgob in reply to dvcarola

Does is make him grumpy??? Prednisone ?

dvcarola
dvcarola in reply to Cynthgob

Good thing for me, hubby not grumpy but I am at times 😊 Is your husband on ADT like Eligard or Lupron? Because i know that one of the side effects of ADT is mood swings or depression. We as caregivers need a little more patience and understanding. I hope it gets better for you and your husband.

Cynthgob
Cynthgob in reply to dvcarola

Lupron. And not grumpy now but previously prednisone has made him grumpy

leswell
leswell in reply to dvcarola

Hello again. In our experience ADT (firmagon, Lupron, and Vantas) have caused dementia, not just being a bit forgetful at times. Leswell was diagnosed as having dementia within minutes of visiting a neurologist. Nevertheless, I don’t think we had the option not to have hormone therapy. He would likely be deceased by now without it. I’ll take him with or without memory. Hoping your husband’s memory loss remains minimal. Mrs. S

P.S. Leswell was diagnosed 2 ½ years ago. PSA 1500, GS 9. Currently, PSA 322, T44. 3rd bone scan day after tomorrow.

dvcarola
dvcarola in reply to leswell

Thanks for sharing and I do hope my husband’s memory loss will not escalate further 😢 Im so sorry to hear about your husband’s dementia but you are right, at least he is out there fighting and with your tender loving care, im sure he will live on for many many years! Take care and prayers for a clear scan for Leswell 🙏

Are you in the states?

dvcarola
dvcarola in reply to Cynthgob

No, we are here in the Philippines so limited doctors specializing in Pca

Your PSA is great--considered Undetectable. I would not stop your ADT. In my case I went 22 months undetectable on ADT before I stopped. I suggest, not being a Doctor, that IMO, only you try to get 20-24 months PSA Undetectable, with your program.

Nalakrats

dvcarola
dvcarola in reply to Nalakrats

Oh i thought below 1 would be considered undetectable? I will ask Urologist if my husband can stay on ADT for maybe 24 months instead of 12 on undetectable PSA.

Btw, you mentioned before about adding Metformin to the cocktail but hubby’s blood sugar level isnt diabetic/elevated, is that safe to take even with normal sugar levels?

Thanks Nal for your help!

Nalakrats
Nalakrats in reply to dvcarola

As long as he does not have low blood sugar---typically you start at 500 mg's, and you can use an extended release. Has to do lots of --blood tests--you can get test kits in a drug store--and then up to 1,000, and to 1,500, and many men here use 2,000 mgs. I would send a message to pjoshea13--he has written many papers on this subject. I am not comfortable leading on this--I am not a Doctor---but I myself am not diabetic, and am on 2,000 per day.

Nalakrats

dvcarola
dvcarola in reply to Nalakrats

Ok thanks for letting me know and will discuss again with MO because when asked last week, he is worried abt adding Metformin just because husband is not diabetic. He said it might drop the sugar level too low and hubby may feel dizzy at any given time 😔

Nalakrats
Nalakrats in reply to dvcarola

Do you know what the blood sugar numbers are? I am curious where the starting point is.

dvcarola
dvcarola in reply to Nalakrats

Hi Nal, a few months ago hubby’s fbs is 95 mg/dl but when we checked this morning it has increased to 106 mg/dl so i guess i will push for metformin on the next visit to MO since he is on prediabetic stage already right?

Nalakrats
Nalakrats in reply to dvcarola

When on ADT I went from 95 to 108---and then hit the Metformin---working up from 500 to 2,000 mg a day split between time release and regular 500 mg tabs. That was my program not my Doctors. I told him why I wanted it, showed him a couple of research papers---and I set my own doses.

So I cannot say back to you right!---I am not a Doctor, and this is something you will have to discuss with your Doctor. You can go to Google, and search Metformin and Pca--and copy off papers, supporting its use. Or I believe pjoshea13, has done postings on this subject, based on NiH, or PubMed---documentation.

Nalakrats

Cynthgob
Cynthgob in reply to Nalakrats

I’m so happy you are back!!! I’ve missed you! Thank you!!!!

leswell
leswell in reply to Nalakrats

Sorry. Once more tonight. Should you cease taking Zytiga if the PSA has never moved down in four months? Les’s PSA is now 322; T is 44, up from 14. He, obviously, is mCRPC but has no pain. Tablets of Zytiga recently changed by specialist from 4 to 2 and prednisone from 2 to 1 per day. When to cease Zytiga/prednisone entirely? Costly and not working. Best guess even though you aren’t a doctor. Mrs. S

leswell
leswell in reply to leswell

Do you need an aged secretary?

Nalakrats
Nalakrats in reply to leswell

I am not a doctor--but it appears from the little i know, that there may be a reason to move on to lets say Lu-177, Actinium 225, BAT, and Targeted PARP, and Checkpoint Inhibitors.

Nalakrats

Zytiga helps to stop progression to CRPC by cutting off testosterone from the Adrenal gland, which stops the small amount of testosterone reaching the PC cells, which would allow them to mutate and become CRPC.

It’s a lifetime drug, in that you must take it until it stops working.

The Prednisone replaces the steroids lost from you adrenal gland.

STAMPEDE trial has shown Zytiga to be extremely effective when combined with Lupron/Zoladex. Three year survival rates are approximately doubled.

Personally, I’m approaching seven years on this protocol. PSA@dx was 571, seven Mets to skull, shoulder, two ribs, pelvis and both femurs. PSA @ 12 weeks was undetectable, where it’s stayed.

dvcarola
dvcarola in reply to TommyTV

Wow 7yrs! Thanks for sharing your story! I will have to discuss with MO about continued Zytiga use but might need to look for other MO if he will not agree. And since we are paying for meds on our own, might need to lower the dose and take them with bfast if the effect is still the same. Btw, did you also continue with Lupron/Zoladez in all those 7yrs? Thanks so much for your help!

TommyTV
TommyTV in reply to dvcarola

Yes, I’ve been on exactly the same meds for 7 years. My doctor wants me to start on Statins, but I don’t want to add anything into the mix, as it’s working so well for me.

Fitzbruce1
Fitzbruce1 in reply to TommyTV

Tommy-

It is very uplifting to know how long u have been fighting, since I received a similar dx just 3 months ago. You give me hope!

i would go lower then that or stopping the eliguard,lupron. those shots other then make u weak and hot flashes also eats your bones away. i stopped when my was 3 and didn't start up til it was in the 30s. my body felt good. my major problem is i couldn't get zytiga now and its been 5 months which now everything is high,so i started a new tx called PROVENGE.

Hidden
Hidden

Hi there,

I split my time between Boston, MA and Makati, been diagnosed with Advanced Prostate Cancer, July, 8th, 2018 (PSA 1000+), age 58. Will look into St Luke Hospital care when in Phils, in the Lahey Health System in Boston area - nicer than Dana Farber and gang.

Current treatment (commenced mid August, 2018) : Casodex/Lupron/Zytiga had Bone Scan (whole body), CT Scans (chest and abdomen), MRI of Prostate and the usual blood panels.

The images did not show bone mets outside of pelvic region. But the pelvic region images did show extensive metastasis with large tumors invading bowel wall with enlarged regional lymph nodes and affected soft tissues.

Within two weeks of Casodex (bicalutamide), my symptoms of weak urine stream with burning sensation has rescinded.

Will be traveling to Phils soon, appreciate your posts, in fact - this is a wonderful site, was all over the place looking for "genuine" prostate cancer information. Was building up excessive stress, so much fragmented Google results.

Then, discovered malecare, I've calmed down, let the journey begin...

dvcarola
dvcarola in reply to Hidden

Hi NYMets, i highly recommend our Urologist, Dr Dennis Serrano from St Luke’s hospital, he is also the chief urologist of the National Kidney Institute, also chief of robotic surgery in St Luke’s hospital, etc. He is the one who gives my husband the Eligard shots.

As for Med Onco, ours is Dr Gerry Cornelio and he is also good, i heard he did some trainings at Memorial Sloan Kettering. Although good, im also looking for other options if he will insist on stopping Zytiga after 6 months. But he said he will have to check on PET PSMA scan first first before final decision.

I heard one very good Med Onco also in St Lukes by the name of Dr Antonio Villalon. We might see him and get 2nd opinion soon. One drawback is that since he is very good, he has soooo many patients that sometimes his clinic hours ends at 9-10pm at night.

All the best to you and hopefully we get to meet u in person when you are here in Manila 😊

Hidden
Hidden in reply to dvcarola

Hi,

Certainly will be very nice meeting you and the Prostate Warrior!

Please feel free to send me email, delatorre.george@gmail.com, my wife is currently in Makati, she is so busy running our liquor business. I know your husband gets tipsy with San Miguel lite :)

I'm a healthcare/clinical research software developer for 20+ years. So, I stress my group of physicians, because I know too much (like posters here). This is somewhat a dual edge sword, regardless - we are here because of our inquisitive nature.

I'm being treated by the Lahey Health System in the Boston, MA area, notice, not selected the Harvard Medical School's hospital group for healthcare. Mass General, Brigham and Women's, Beth Israel, etc., are world renowned care systems. But, they are massively subsidized, so I'm not seeking grants for research, I just seeking real *daily* life care.

Interested with your recommendations of Phils physicians, will contact them soon. It's of interest, that the Asian geographical region has the lowest prostate cancer occurrences per male population. While the USA leads the world in occurances, my quick comment on this, has to be something about our (USA) depencies on processed foods. Most restaurants serve processed foods as well, many Americans don't have the time to select organic and food prep...

Cheers,

George

Hi there.

I am finding this confusing as well. I would have thought that when the response to Zytiga is so good that you keep taking it until it stops working. My husband was on it for two and a half years and his PSA was under 2 for most of that time. Also, your husband's Testosteron levels with 0.25 are very low, I think around 8 is normal. My husband's level was 0.15 towards the end.

Keep us posted. Mel.

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