Please help us to decide! : Hi worriers... - Advanced Prostate...

Advanced Prostate Cancer

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Please help us to decide!

Seabird12 profile image
32 Replies

Hi worriers, there is a situation wondering if you can help us. My husband diagnosed with stage 4, Gleason 4+5, PSA 13, with 2 or 3 bone mets, exactly a year ago. He was immediately put on ADT+ Zytiga, he had 40 days of radiation as well, his PSA dropped to 0.04 and stayed there.

He had to stop zytiga soon after radiation began since his liver score increased.

Since radiation, he is only on Lupron!

Then Dr. Scholz asked us to decide between chemo and Xtandi. My husband, since dx, is not showing any interest towards Chemo because of this pandemic, I also don’t understand how chemo can kill dormant cancer cells, on the other hand, here I see many comments and posts regarding the advantages of chemo when cancer is not very progressed.

But how not to be worry of COVID 19 when the immune system gets so weak?!!!

Please help us to figure out what we should do, chemo or Xtandi ? Which one helps him to put this disease into longer remission? Which one at this point add his chances for longer survival?

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Seabird12 profile image
Seabird12
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32 Replies
db1966 profile image
db1966

It’s perfectly safe to go to the hospital for chemo/ radiation. It’s somewhat concerning that your doctor is giving you a predicament here. Perhaps a 2nd opinion should be considered. My PSA in 2015 was 212 and several bone mets. I immediately started chemo and Lupron which within months reduced my PSA to .01 A couple years later I started Zytiga which maintained my psa below 0.2 and radiation in March this year appear to have eliminated the bone mets.

I can only tell you my experience and it worked for me. One set back in October 2020 was having to take eligard for the first time after having Lupron for past 4 years. My body hated the eligard. Other than that I’m doing great.

tango65 profile image
tango65

Chemo seems beneficial in disease with de novo high metastatic burden. He had only 2 or 3 metastases. This post has some info about this situation:

healthunlocked.com/advanced...

"Two main factors should be considered when defining the risk/benefit ratio of adding docetaxel or ARTAs to ADT in the treatment of mHSPCa: disease volume/risk, and the timing of the onset of metastases.

It seems that the benefit of adding docetaxel/ARTAs to ADT is not the same in all mHSPCa patients. Previous studies have identified a high metastatic burden and de novo metastatic disease as poor prognostic factors associated with shorter survival [27, 28]. The CHAARTED trial first introduced high- volume disease (the presence of visceral metastases or ≥4 bone lesions with at least one beyond the spine

confirmed that docetaxel leads to a survival advantage in men with high-volume disease (HR 0.63; 95%CI 0.50-0.79; p<0.001) and de novo metastatic disease (HR 0.63, 95%CI; 0.49-0.81; p<0.001), but not those with high-volume disease relapsing after local radical treatment (HR 0.72, 95%CI 0.36-0.46; p=0.37). There was also no reduction in the risk of death in the case of patients with low-volume disease as a whole (HR 1.04, 95%CI; 0.70-1.56) regardless of whether they had de novo metastatic disease (HR 0.86, 95%CI 0.52- 1.42; p=0.55) or relapsed metastatic disease (HR 1.25, 95%CI; 0.60-2.60; p=0.55) [29]."

LearnAll profile image
LearnAll

It is not necessary to have chemo at this point. His PSA has come down to excellent level. If I have to choose between chemo and extandi...I will prefer extandi at this time. Chemo can be reserved for later date.

Do the chemo while his body is strong enough. DO NOT reserve chemo for a later date as that date may never come.

timotur profile image
timotur

SB: You may consider staying on Lupron only and monitor PSA until there is a CoV vax coming soon. (Note: I dropped Zytiga during radiation too, and Lupron alone still dropped PSA). Monitor PSA, and if it goes up, start Zytiga again at a lower dose and 10 mg of Prednisone to lower liver ALT/AST. Lastly, since you are borderline Oligometastatic with < 5 mets, consider treating the mets separately with SBRT and stay on ADT. If you had a higher met burden, then perhaps consider chemo, as ‘tango’ said, Stampede suggests increased O/S in cases of higher Gleason and met burden using ADT + Zytiga + chemo. Just my 2ć.

Tall_Allen profile image
Tall_Allen

I don't have a strong recommendation, but I can raise a few considerations for you to think about and discuss with Dr. Scholz.

If he decides for chemo, be sure he gets Neulasta with it. That will help maintain his immune system.

Maybe it's best not to think of the cancer as "dormant." PSA is a result of tumors that have grown large enough to create their own blood supply. Because you have eliminated the larger tumors (in the prostate and the bone metastases), that has eliminated the PSA they produced, but there are still many cancer cells in systemic circulation and in tissue reservoirs. Not really "dormant" per se, they are thought to be "preparing the soil" to enable future growth.

Here's an article about "treating PSA":

prostatecancer.news/2020/07...

I agree with you that chemo works best on rapidly dividing cells. Microtubule stabilization won't kill cells unless they try to divide. But I can't guarantee that his cancer cells are not rapidly dividing, even though PSA evidence of it is currently lacking. While earlier evidence (from CHAARTED) suggested that Chemo was more effective on those with high metastatic burden, this finding was later disproven by a much larger STAMPEDE trial.

Another STAMPEDE trial proved that early use of chemo or Zytiga was equivalent in slowing progression and extending survival in newly diagnosed mHSPC. Still another STAMPEDE trial proved that prostate radiation was beneficial in newly diagnosed men with a low metastatic burden, which is what you acted upon. What the STAMPEDE trials don't tell you is the best sequencing of those therapies (which is your current dilemma) when a patient is still mHSPC, but is no longer newly diagnosed.

Can't he get Erleada or Xtandi? Erleada was also approved for newly diagnosed mHSPC. I mention it because Erleada prevents the amplification of the androgen receptor. But there hasn't been a comparative trial. I guess he can try one or the other, and see if there is significant hepatotoxicity.

TheTopBanana profile image
TheTopBanana in reply to Tall_Allen

”Another STAMPEDE trial proved that early use of chemo or Zytiga was equivalent in slowing progression and extending survival in newly diagnosed mHSPC. Still another STAMPEDE trial proved that prostate radiation was beneficial in newly diagnosed men with a low metastatic burden, which is what you acted upon. What the STAMPEDE trials don't tell you is the best sequencing of those therapies (which is your current dilemma) when a patient is still mHSPC, but is no longer newly diagnosed.”

Which trials?

Tall_Allen profile image
Tall_Allen in reply to TheTopBanana

STAMPEDE is an ongoing set of trials in the UK for newly-diagnosed men with metastatic prostate cancer.

TheTopBanana profile image
TheTopBanana in reply to Tall_Allen

Yes I know. But I find it difficult to navigate in specific trials in STAMPEDE. The trials that showed benefits, do you they have any way of identifikation?

Tall_Allen profile image
Tall_Allen in reply to TheTopBanana

Active trials are identified by letters (A-H). But the results, when published, are identified by the therapy that was investigated. There are sometimes multiple publications for a given therapy (updates, subgroups, etc.)

TheTopBanana profile image
TheTopBanana in reply to Tall_Allen

Just to be certain: would you say that these studies indicate that chemo for my father (recurrent Oligometastatic) could be beneficial after all? (excuse me for hijacking the discussion, just had to ask if this changes something)

Tall_Allen profile image
Tall_Allen in reply to TheTopBanana

I have nothing to add to what I just wrote.

TheTopBanana profile image
TheTopBanana in reply to Tall_Allen

You don't have to, I just remember that you before the summer advised against early chemo for other patients than those with heavy disease burden. And now "Still another STAMPEDE trial proved that prostate radiation was beneficial in newly diagnosed men with a low metastatic burden, which is what you acted upon. What the STAMPEDE trials don't tell you is the best sequencing of those therapies (which is your current dilemma) when a patient is still mHSPC, but is no longer newly diagnosed." So perhaps the situation for my father has changed, I will discuss it with his doctor.

Tall_Allen profile image
Tall_Allen in reply to TheTopBanana

My thinking about chemo for heavy/light disease burden changed when the STAMPEDE RCT results were published. It overturned the idea that chemo was only effective for those with heavy metastatic burden (which is what CHAARTED found).

How has your father's situation changed? Are there more metastases now?

tango65 profile image
tango65

This link has info about chemo from a real expert:

grandroundsinurology.com/dr...

"What kinds of side effects can patients expect from chemotherapy? What are you hoping to reduce?

Dr. Dorff: One of the most concerning side effects is the peripheral neuropathy, which can become permanent, but I don’t want to scare any readers.

Can you explain what that is?

Dr. Dorff: It’s damage to the small nerves out in the fingers and toes that can manifest as numbness or pins and needles, burning kinds of discomfort. That can be permanent.

Is there anything patients can do before or during getting chemo to reduce the likelihood of that happening?

Dr. Dorff: Not that we know of.

There’s no way to predict who might suffer from that or not?

Dr. Dorff: It’s not a complete no. We know patients who already have some preexisting neuropathy, whose nerves are already damaged, are more susceptible, for instance patients with diabetic nerve damage. That’s one reason we might try to get them Jevtana (cabazitaxel) instead of Taxotere (docetaxel) because Jevtana (cabazitaxel) doesn’t impact the nerves in the same way. I’m not sure if that’s what patients worry about, but that’s one of my number one concerns because I’ve seen patients a few years after chemo who are still vexed by the neuropathy."

GoBucks profile image
GoBucks

Did you ever discuss taking a lower dose of Zytiga? My liver numbers were bad and I stopped too. Then I started back at 1/2 dose and my liver numbers were good. Went up to 3/4 dose and have stayed there. Food for thought.

j-o-h-n profile image
j-o-h-n

If you're careful and follow the medical protocols regarding #19 you and your husband have nothing to fear.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/07/2020 10:59 PM EST - Remember our heroes of 12/07/1941.

Bodysculpture profile image
Bodysculpture

Diagnosed 2019 Gleason 9 Cancer spread to the ribs

Immediately placed on hormone supressents 1 itramusculat injection every 3 months which I am still doing

3 weeks after that Docataxal chemotherapy

My PSA was 13.5 when diagnosed it is now 0.55 and decreasing monthly

I was treated during COVID many safety measures where in place and I was given another injection I did myself in the fat of the stomach which doubles your immune system as COVID was rife

My blood counts held firm

I feel great today

We then moved on to radical radiotherapy to the prastrate to kill even more of those buggers

I am so gratefull

I've got my life back

I am back the work and training like never before

My advice is its worth the risk having chemo

Docataxal was very tolerae and it got me tired and tasteless ness

A small price to pay for the results I received

Dont know how long this will last but today I thank god I am not in pain

I can go to work and have a laugh

And come home to Wonderwoman and tell her how much she means to me

I love to cook so amazing dinners every night

Wonderwoman cried for days when I wasnt around

She lost weight sleep and most of all her smile

She is smiling sleeping too damn much and she just got the whip out

Lord help me lol

He is gonna be fine

Concerned-wife profile image
Concerned-wife

I am finding it interesting how medical oncologists give patients options. Quite respectful, but difficult since you need to research and decide. The men have given you the summaries of the research. I am assuming your husband is going to THE Dr. Scholtz whose videos and conferences have helped us.I would assume this means he believes the treatment have equal efficacy. I don’t think the treatments have been studied in a comparative trial.

Since the men discussed the medical aspects, I will mention insurance. At least our experience is the pills can be very expensive whereas in-office care is covered. You will see this issue raised in other discussions so I just wanted to mention now while he weighs his choices.

This site has been invaluable to us and so glad you have found it to help you both.

LearnAll profile image
LearnAll in reply to Concerned-wife

Great logical thought "Dr Scholtz believes that both treatments (Chemo and Extandi) are equally effective..and thats why he is giving this choice"Dr Scholtz being one of the finest Oncologists in USA, I will listen to him..If I have to decide I will go with Extandi..."

MateoBeach profile image
MateoBeach

As for COVID risk, you are safer in a well staffed infusion center than going to a restaurant by far. His risk would be getting it elsewhere while going through chemo. He should be prioritized to receive vaccine in wave 2, very likely before the end of February if all goes well. But if you are really being careful in every detail you need not wait if you choose chemo now, as appears optimal. Though an AART (Xanti or Erleada) may be equally good since he did not actually become treatment resistant to AA.

ctflatlander profile image
ctflatlander

I too had elevated numbers when I started Zytiga. Reduced dose to 500 mg and liver ast/alt normal. I also had 2 mets to the bone. Just relaying my experience.

EdBar profile image
EdBar

I did both at the same time. It’s been almost 7 years since my G9 stage 4 dx and I my PSA is undetectable. That said, if it were me, I might start Xtandi and get a Covid vaccine before undergoing chemo. Vaccines should be available sometime in the first quarter of next year. Of course ask your doctor his thoughts on this. My immune system got wiped out by chemo so your hesitation is valid.

Ed

snoraste profile image
snoraste

You can retry Zytiga. I had the same issue when I started on Zytiga. My liver numbers got too high. I stayed off of it for a couple of weeks, and re-started it, increasing the dose from 250 to 1000mg over the next month. No liver issues. I know others who had issues like this and got resolved.

CalBear74 profile image
CalBear74

In early 2020 an Italian COVID-19 study of men with prostate cancer and who were on ADT, found in an apparent protective effect from ADT. Of the 2500 men on ADT studied, only 4 contracted COVID-19 and those four had only mild cases. You will be able to find this study published in an Italian medical journal And reported in the US /UK press.

My choice would be to go with docetaxel first followed by Xtandi. Docetaxel is for a finite period. However Xtandi, thinking positively, could last for many years, thus you will have docetaxel and it’s benefits behind you.

wilcoxsaw profile image
wilcoxsaw

If you are seeing Scholz, you must be in the LA area. I'd make an appt with Tanya Dorff at the City of Hope for her opinion. She's 30 miles from Scholz. Great doctor, on a par with Scholz. I see both. Scholz's approach is to throw everything including the kitchen sink at the cancer. Dorff does not take that approach necessarily. Dorff is cutting edge, and up on all the trials and how the results affect her practice/patients. Scholz also, but he is very aggressive.

You are justified in being concerned about chemo's affect on the immune system , especially if you are in the So Cal area with covid cases very high. Even though the infusion center may be safe, the 18 weeks he will be on chemo will increase the risk should he get covid that his case could become serious.

00001 profile image
00001

Does everyone know that type O blood doesn't get Covid? I got it, my husband drank out of my drinks and we shared food (as I was sick for 6 weeks) but he never got a bit of it. Then we heard on TV about type O blood - which he has, they say it actually makes antibodies. He is 75 and I am 70, so it wasn't because we are so young. He is on Firmagon, no side effects.

Nous profile image
Nous

hi Seabird12 ... i encourage you to checkout envita.com ... they specialize in situations like your husband is in ... best wishes ... Nous

CaseydelaTor profile image
CaseydelaTor

Hi!

My husband got chemo even thought he's doctor doesn't suggested it, he is the one who dictate he's doctor how to manage he's situation but it really helped him a lot.

after Chemo he's PSA stay undetectable for almost 2 years PSA 0.02 up to now, he stopped taking zytiga now and let see what happen, we are hoping and praying that he's PSA will never go up again.

Best Regards!

Chugach profile image
Chugach

I have read and experienced personally that sometimes there is not a good response from Xtandi following Zytiga, something about them being similar in how they work. When I went to Xtandi it only worked for me for a month. I have also heard that chemo can help reset the body’s sensitivity to drugs like Zytiga and Xtandi. Probably should ask a Dr. about those two points to make sure they are correct.

The first time I did chemo it kicked my ass but probably saved my life, a few years later I did chemo again, this time docetaxel, and it didn’t work very long. My PSA started rising while on chemo. What chemo are they recommending?

In this thread there was a recommendation about backing off the Zytiga dose level, but keep using it. I know these things probably are not well known, but it makes intuitive sense to me.

I’d get a second opinion and also explore genetic testing for immunotherapy options and PSMA for options with LU-177

Doseydoe profile image
Doseydoe

They don't make it easy for you. It's a lot to take in. My simple way of making sense of the different treatments is to think of the way each one works. My understanding is ADT works by either stopping the production of testosterone or not allowing testosterone to be absorbed by the PCa cells, effectively starving the cancer. Chemo tries to kill rapidly growing cells like hair and cancer. As chemo is infused into the blood stream, it has the opportunity to reach most parts of the body. Thereby hopefully killing cancer cells that may be trying to seed as a result of leaving the prostate. This seems like good insurance to me. Radiation is targeted at known areas/mets and works by altering the DNA of the cells which kills them off over time. Good for localised areas of concern. In my case, the PCa was trying to consume my bladder and kidney function and while ADT and Chemo worked in there own way, I needed a TURBT and 20 sessions of VMAT Radio to get it under control. So everyone is different and the treatments work in different ways. I needed all three and while they have side effects, for me it was tolerable and worth the effort. 😎DD.

Tall_Allen profile image
Tall_Allen

You just said he decided against chemo. Chemo was certainly a good option and remains a good option.

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