Chemo v/s Zytiga ?: Dad is currently... - Advanced Prostate...

Advanced Prostate Cancer
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Chemo v/s Zytiga ?

Dad is currently only on ADT - Firmagon.

Since his PSA is almost 0 and blood work has improved, doctors have given us 2 options of Chemo - Docetaxel (every 3 weeks, 6 cycles) and Zytiga (Abiretarone).

However my MO strongly advises Chemo first, considering dads age (53 yrs) and widespread mets.

MO's main concern is that since dad has bone marrow infiltration due to the cancer, blood levels can go way lower than usual. [Risk]

So our MO wants to give only 70-80% of the Chemo dose for the 1st Cycle and monitor, if side effects aren't bad, he shall increase the dosage next cycle, if its too bad, he'll stop Chemo and start Zytiga.

Want to know if its a good idea to try Chemo first? (Main concern remains regarding possible infections or reduced blood levels).

On Diagnosis:

PSA: 149, ALP: 887

After ADT:

PSA: 1.43, ALP: 1225 -(1st month)

PSA: 0.776 -(6 weeks)

PSA: 0.566, ALP: 655 -(2.5 months)

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I picked chemo due to the fact that I was physically strong and didn't want to wait until my cancer weakened me. Another reason I picked chemo first is you can always try it again later in the treatment sequence. Finally, chemo kills, it doesn't hold cancer cells in check.

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Thanks nonamelame, makes sense. Good decision indeed. Wishing you the best in your ongoing treatments :)

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I agree that with widespread mets, chemo is the better choice. As far as the bone marrow infiltration, if he is responding well to ADT, the cancer in his bone marrow should be no different in sensitivity to ADT. So I would expect there to be improvement there as well. When I first was diagnosed, my doctor said I could wait up to 6 months and still get the benefits of early chemotherapy. I started a month after ADT, but I could have waited longer.

If I were in that situation, I would consider waiting to see if the blood numbers improve before starting chemo. Good chance they will. If they don't or it's very slow, another option is weekly dosing at 1/3 the dose. This has been studied and found to be effective with lower side effects. It's more hassle to come in weekly, but easier on his body.

These are things your dad can discuss with his doctor.

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Thanks gregg,

My dads WBC is always in the right range. Its always Hemoglobin and Platelets that were low initially.

His initial blood levels were poor, Hbg: 9 dropped to as low as 6.9, Platelets: 150 dropped to lowest of 120.

His latest blood levels are: Hbg: 9.9, Platelets: 3.5

Doctor sees this as an improvement and tells us there is no immediate hurry, we can decide when we wish to start anytime from now.

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Looks like the blood numbers are improving so that's great. I would expect that since the cancer in the bone marrow is also hormone sensitive. I agree with your doctor, there's no rush. I'd wait until the numbers look better because chemo will effect them.

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Wise MO, imo. Also, if he does 6 infusions, 3 weeks apart, he can move onto Zytiga in just 15 weeks. If he starts with Zytiga, he will have to wait 3 years before trying chemo. He gets the benefit of more therapies in less time if he starts with chemo. I think Schwah took them both together.

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Thanks Tall_Allen, starting the dose with 70% of the normal chemo dose to test how it works on dad is a good idea by the MO then?

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He has experience with this sort of thing - I am not a doctor.

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Makes sense. Thank you.

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Hi Cheerr,

This is what my Dad's dr did - my Dad started on (I think 55 or 60 (is the measurement grams? ml? )) and worked his way up to a full dose of 70-75 as he has progressed through the treatments. His body (knock on wood!) has tolerated that well. My Dad was diagnosed in Feb of this year, has widespread mets and chose to do the chemo before Zytiga. His initial PSA was 150, Alk Phos around 1200. PSA now 7.4 and Alk Phos around 700 (that was just before the most recent treatment, which he had last week). So I think his presentation is pretty similar to your Dad's.

Very best wishes to your Dad, you and your family!

In solidarity,

Sunlight

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"If he starts with Zytiga, he will have to wait 3 years before trying chemo."

Why so ??

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It may remain effective for about 3 years.

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There is a large study by Dr Fizazi showing great improvement in results by starting chemo and zytiga together rather than sequentially (i think it was called Latitude). My father is only zytiga as he is quite old and we felt the chemo would be too hard for him. But if i was willing to do chemo, i would combine it with zytiga rather than sequentially. Hope that helps. All the best with your treatment

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LATITUDE (Fizazi) did not include chemo, only abiraterone+ADT vs ADT alone.

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It is excellent if it remains effective for about 3 years. If it remains effective for 5 or 10 years, it is even better. If he never has to use chemo because the Zytiga is being super-effective, that would be the best.

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The median failure-free survival among metastatic hormone-sensitive men was actually over 4 years in STAMPEDE, and rPFS was 33 months in LATITUDE. It is much better to use chemo earlier in disease progression because the side effects are much lower. Although the kind of side effects are different, the degree is the same for the two therapies.

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So early chemo proved higher survival over early zytiga ?

And are chemo and zytiga currently considered equivalents in reducing the disease progression / tumours ?

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They were equal in all metastatic hormone-sensitive men.

academic.oup.com/annonc/art...

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Why do you have to wait 3 years for chemo after Zytiga?

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Because it remains effective for about 3 years.

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I did. 4 sessions of chemo and 21 months of Zytega lupron prednisone. Plus zometa and Celebrex. So far so good. On a vacation for the time being.

Schwah

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Are you on monthly Zometa infusions ?

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Every 90 days. Lowe dosage (2mg I think ) plus daily Celebrex. Lower dosage to minimize risk of jaw issues

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Can you explain that? My husband is on Zytiga and he started chemo in June. They had to stop chemo after three rounds because of complications with his incision. So, now he’s on Zytiga w/ Prednisone and the dr wants to switch to Xtandi (sp?) so he can quit the prednisone.

We made another spot with Dr Armstrong at Duke to see what he thinks.

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It seems that one can receive more therapies in less time if a high-volume met patient begins with docetaxel.

Why is he quitting prednisone? perhaps he is getting too much?

pcnrv.blogspot.com/2019/06/...

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The dr wants to stop the Zytiga because of the prednisone. He believes that, along with the chemo, it is making his 12" long incision begin to open up. ( I remember hearing that Zytiga can be combined with something other than prednisone, so I'm not clear on why he wouldn't have tried that first.)

BTW, his PSA has been SLOWLY coming down. December it was around 7 and now it is down to 4.6.

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My husband has been on Zytiga for 2 1/2 years. It is no longer working, he has to be off for 30 DAYS before starting chemo. However, he has opted to try a clinical trial before starting chemo. He wants to put off chemo as long as he can.

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Why the delay in starting chemo? What clinical trial?

IMO it is a big mistake to "put off chemo as long as he can" for two reasons:

1. Chemo extends life more if used earlier. When used in polymetastatic hormone sensitive men, it extends survival by about 1 1/2 years, When used when they are castration-resistant, it extends survival by about 3 months.

2. The side effects of chemo are much more tolerable, and recovery from them is much quicker when done when one is younger and healthier. As the cancer makes his system deteriorate (e.g., extensive bone marrow infiltration), docetaxel may even become impossible to tolerate.

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He feels (wants) to put off chemo as long as possible. The clinical is a Phase 1 with apalutimide (sp?) and an immunotherapy drug. This combo has been successful in non-mestatic so we are game. If it doesn't help, we will proceed to the chemo. Started some radiation today for spots on shoulder, neck and hip.

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Since my dad was diagnosed with bone marrow infiltration, would chemo be tolerable now?

After 2 firmagon injections, his blood work improved than before. Now it’s

Haemoglobin- 9.9

Platelets - 3.5

WBC - 7.3

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We didn't have to wait three years to start chemo. The minute the onco knew zytiga wasn't working, we started chemo - taxotere.

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How long did Zytiga work for? You didn't start chemo for all the time in which Zytiga was working.

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Not sure if zytiga ever worked... but, he took zytiga for approx 3 months. Onco did 3 month follow-up scans and found cancer growth, including cancer in the liver. PSA was undetectable or almost undetectable at the time the cancer was active. He Started taxotere asap.

Also, I know of a guy that is being treated at MD Anderson and he is currently on zytiga and jevtana chemo. I have read that the new thing is to combine treatments to see if a person gets a better response.

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Sorry to hear that. The average for newly diagnosed metastatic men is 3-4 years.

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Hi Tall Allen,

Its interesting you say chemo has to be 3 years after Zytiga. I have been on Lucrin ADT since 2010 and had Cosadex added, got 6 mths and then Zytiga, got 8 mths added suppression of Psa while mets all slowly grew bigger. But a month after Zytiga failed, I went onto chemo with Docetaxel, so no 3 year wait.

My onco said chemo would probably fail because he's seen hundreds of Pca patients not get any benefit, especially where there are bone mets. But we both had Lu177 in mind for after chemo failure.

There was never any suggestion that I should begin chemo right after Dx in 2009.

Plan then was ADT + EBRT, a doomed plan because I had inoperable Gleason 9, with all 9 biopsy samples positive, Psa fairly low at 6 for that amount of "high risk" Pca.

EBRT to PG may or may not have prevented further local spread.

But I had good ADT suppression, no mets were seen until PsMa Ga68 scans became available in 2016, but methinks they were there in 2009, just too small to be seen with CT scans at that time. But chemo has bad effect of QOL, so its usually put off as last treatment to be used.

Patrick Turner.

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I'm saying that Zytiga can remain effective for about 3 years. 3 Years is a median - half get more than that, half less. We didn't know about the effectiveness of early chemo in 2009. Chemo usually improves QOL. It is a big mistake to put it off for reeasons I've explained..

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My doc said longest benefit time he ever saw with Zytiga was 2 years. I read somewhere 8 months was mean extra time, and that's all I got between beginning Zytiga and time it took to see Psa fall to 2.0 for a couple of months, then rise rapidly to where it was before I began the drug.

Chemo could improve QOL, if a man was in a terrible state and the chemo actually worked. But apart from a rising Psa I was in a fairly healthy state before chemo, and it has given me long lasting side effects that are anything but an improvement to my QOL.

My chemo did not work. Psa quadrupled, met numbers increased, so Pca just got worse.

It was highly likely chemo would not have worked if I had had it right after diagnosis. Maybe docs would have insisted I have chemo after diagnosis if full body CT scan I had then showed a pile of mets. But not one was seen.

I got better uninterrupted QOL with ADT. I found I coped with ADT very easily, and I kept very fit with cycling up to 12,000km a year.

ADT meant I became 3kph average slower than the very few other blokes my age in cycling groups, so I moved to another group that rode a bit slower.

I don't need to cycle with others to be happy on a bicycle, and glad I am now able to return to it this spring. I feel like I am 25 most days.

I'm not as strong, or as fast, but sense of caution remains intact, and so life is good.

Today I cycled across town to see my oncologist, Psa has gone down to 0.41, reducing at a linear rate with time since my last and 4th Lu177 in May, ie, about from 1.6 right after Lu177 to 0.4 in 3 months.

Nobody knows how long this trend will continue.

Patrick Turner.

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You and your doc must be talking about when Zytiga is given to men with mCRPC, not with mHSPC, as is the case here. Your situation does not apply to this OP.

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mCRPC is metastatic castrate resistant Pca, which was my case, but what is mHSPC?

Patrick Turner.

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metastatic hormone-sensitive PC, which is what the OP was asking about.

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Hi Patrick,

Is it true that your MO think chemo would fail for most of the patients with lot of mets?

YET every MO pushes for chemo as first option post ADT. Now I wonder if it really benefitted anyone.

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Hi Cheerr,

I only know what my oncologist told me. Docetaxal was the next normal treatment after failure of ADT, the ADT + Cosadex, then ADT + Zytiga. I got quite used to these things giving only a brief reduction of Psa.

He said it probably would not work. It meant small chance it would work. And it does work with some cancer patients but not all, and I'd seen how Ovarian cancer killed one sister and 4 chemo shots did not help her much at all, and gave her only 8 months extra to get her affairs in order. Finally she could not eat, and her whole digestive tract was riddled with mets, and after going to stay at a hospice she was dead 2 weeks later. But she died happy enough, the morphine worked, but the self administered dose went up, and she overdosed alone at 6AM on her last night alive. She was 60, with a 17yo daughter.

Chemo seemed to work for a friend with Pca last year, Psa went from 40 to 2 in about 3 shots, then stayed at 2 for a month, then slowly back to 40 after 10 shots. His Pca mutated fast and he could not try Lu177 and a fresh batch of liver mets appeared after chemo and he quickly became so ill there was nothing docs could do so he died 3 years after diagnosis at under 60.

My oncologist said he thought Cabazataxel worked slightly better than Docetaxel, and next up was Carboplatin with worse side effects and one other not known to me.

Once there are substantial Pca bone mets, chemo may be fairly ineffective in many cases, not all, but many, so chemo outcome is uncertain, but then all treatment for Pca or many other cancers has uncertainty. My oncologist cannot tell the future, he is a doctor, not a fortune teller, and he does not beat around the bush with what he thinks is likely after presiding over hundreds of cancer patients since he graduated maybe 25 years ago. I happen to have remained alive for nearly 10 years after diagnosis with "high risk" ie advanced local Pca that has already spread, and inoperable, but many have not lasted this long.

I've met fellows who had the same initial treatment as I did, 2 years of ADT plus 70 Grey of EBRT and they had no further trouble with Pca, and they told me I had nothing to worry about. But they had a Gleason 5, not Gleason 9, so I just smiled as these guys told me about getting a far better result than I could have ever expected. I was not diagnosed early enough because in 2009 diagnosis method was poor than although my Psa was a low 6, the local Pca had grown to be a monster and mets. I should have been given an RP 4 years before 2009 when Psa was well below 4.

So I tell all men I meet to get a biopsy when Psa approaches 3. I have had men tell me their doctor told them they must do the same. So they got the biopsy, and guess what, a Gleason 5 was found, but the RP worked well and Pca never came back, ie, Psa just went below 0.01 and never ever went up many years later, there was no Pca spread, and doctor was able to remove all PG material and not be forced to leave any behind. These men had incontinence and ED for a short time but eventually all functions returned, and no need for RT or ADT.

For men like me now, with Gleason 9 and low Psa, and thus diagnosed too late, trend is to get Lu177 asap. It may work better than an RP, or chemo, and work on the mets, and chemo and ADT could always be used later if need be. I'd be having palliative care now if I had not got Lu177. My death has been postponed, and I have no idea for how long.

May Nature be kind to thee, and I hope you find the best medical attention possible.

Patrick Turner.

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Hi Patrick-Turner

How's my clipless pedals brother theses days, my black carbon Cannondale bike is a clothes hanger at the moment...

It seems to me, you've taken treatments in stages, as opposed to in combinations. I'm reading this right, or missing something?

Regards,

DarkEnergy, formally known as NYMets

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Hi DarkEnergy,

Its always better to switch a light on to enjoy your energy better, but I digress...

I have not always had one type of Pca treatment at a time.

In 2010, ADT was prescribed for 2 years with EBRT to happen after first 6 months of ADT. Then after the remaining 18mths, I stop ADT and see if it worked. Psa went from 0.08 to 8 in 6 months, so Plan B failed.

Plan A was to have open RP, was attempted, but too much Pca was found around outside of capsule so that Idea failed.

So Plan C, back to ADT in mid 2013 and wait until it failed. It did in 2016, and Plan D as keep going with ADT, add Cosadex, and get extra 31Grey IMRT to PG plus to 2 small mets seen in PsMa scan.

The RT did little, and Cosadex gave me 6 months Psa suppression, then failed. But more mets were seen.

Plan E was ADT with added Zytiga. I got 8 months Psa suppression,

then more mets were seen including bone mets.

When Plan E failed, it was early 2018 and Plan F was to stay on ADT but add chemo, and that failed badly, so by Nov 2018 I began Plan F with ADT + Lu177, and during this right after 3rd Lu177 shot I began taking enzalutamide, so this is Plan G, and after 4th Lu177 shot in mid May my Psa has gone from1.6 to 0.41 now, and PsMa scan report said many mets have gone and bone mets are healing, so not a bad outcome for PLan G.

So from beginning of Plan F with Lu177 and now, Psa has moved from 25 to 0.41, and I have not seen 0.4 since late 2016.

It may have been a wonderful idea to try Plan G in 2010 but theranostic PsMa scans and Lu177 were not available here, and still being trialled in Germany and it was very uncertain if it was going to be useful therapy.

Lu177 is being trialled for some men as first initial treatment at Peter Mac in Melbourne now. Many will get a bit benefit, but their benefit time may only be a couple of years and they must repeat the treatment or turn to something else, as I will, sooner or later.

I am happy now, Its extremely likely I'll be back to square 1 in a year with Pca that has become increasingly difficult to treat, because of how some has mutated and then Pca will not respond to all known chemo or to PARP inhibitors or anything else.

Its possible immune therapy could work but it needs to be developed into reliable therapy with a much bigger success rate than it now has, and I have already damaged my immune system with the 5 chemo shots.

So I do not know what Plan H, I, J, K, L, M might be, but I think I'll die before getting to Plan Z.

I had both knee joints replaced in early 2017 when Psa was < 1.0, and I figured I'd need two good legs to get through a couple more years at least, and docs agreed, and gave me the knees. ( totally free under our Medicare ). Well, knees allowed painless walking and my bike speed got better for awhile until Zytiga limited my speed a bit, but then cycled right through chemo time, and into Lu177 time, and even clocked up 960km in 3 weeks before 3rd Lu177. Then I quit the bike for a awhile to do fencing and paving at my house, and maybe gave myself a problem in a hip. But latest good doc said its a muscle and tendon thing, not arthritis or cancer, so YeeHaa, back on the bike saddle, using L leg more than R leg with the problem.

I hope that answers your question.

Was a horrid day here yesterday with rain, but nowhere near enough to break the terrible drought affecting much of Oz now.

Some blue in the sky now, and I'll cycle out to lunch and do 40km when it has warmed up a bit.

Tomorrow I have a date with a masseur, a Ms Pearl Van Damm, obviously Dutch, a no nonsense gal about 40. She will to try fix the lingering problem with a right gluteus max muscle. I have no idea why it is playing up.

But there will be no added in "happy ending" with this massage gal :-)

I will probably be quite sore for a day. I feel that I will live to have loved meeting her.

In my spare time today I have an old AM radio I designed and built in 1999. Its worked well, but I have a few better ideas to make it work even better and am doing some mods.

I have a friend in hospital, 80, getting a knee replaced, who survived a neck cancer and Pca from his mid 60s. His Psa is not zero, but is 0.02 so there's something somewhere still left, but it may not stop him living to 90. He was chirpy on day after his surgery, nurse had him up walking with a frame and he is a bit stiff, but no pain now. He'll soon want the other knee done, and providing he seems to have enough life in him, they'll do it, and its same hospital I was at, Calvary at Canberra, wonderful care, its like being happily married when you are there, all these beautiful women working to help you. I'm living in a beautiful place compared to maybe 4 billion other ppl on Little Blue Planet Earth.

Always look on the bright side of life.

Patrick Turner.

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I've started with ADT, Lupron (3 months shots) and daily Zytiga/Prednisone about 11 months ago, my Dx (extensive pelvic and vertebral metastasis) PSA went from 1000+ to <0.02 currently. Bone scans shows scars, are micro-metastasis looming around, prostate cancer progression is likely for us patients.

So, recently, "added" Taxotere (Docetaxel) - 6 infusions, 3 weeks interval to ADT. To be clear, my current treatment is Lupron + Zytiga + Taxotere...

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I am curious, I am on lupron, zytiga and predisone. My numbers are good T less than five, PSA 2.2, my dx was this March. I have not been on treatment as long as you have. In my discussions with my MO he has never mentioned chemo. I get my first scans next month, it may be a subject to discuss. Tall Allen just said I would have to wait 3 years after Zytiga but you do not or did you start it after chemo?

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Casodex, Lupron and Zytiga/Predniosone were started when Dx'ed, - added chemo 11 months afterwards. Not sure what Tall Allen was referring to, perhaps SOC protocol, which health insurances adheres with, just guessing.

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The median time until Zytiga failed in newly diagnosed men with mets was 30 months (LATITUDE) and about 4 years in STAMPEDE.It sounds like you combined Chemo and Zytiga?

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Hi TA,

Yes, Lupron and (Zytiga + Chemo), understand SOC is either. I asked for Chemo, because of significantly enlarged retroperitoneal, thoracic spine and pelvic - metastasis findings when diagnosed 11 months ago.

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Hi DarkEnergy,

If i'm not wrong, I recall you made your own decision to start early Chemo to hit out the left over Pca cells. Its interesting to see someone on all 3 treatments at a time. Have you had the opportunity to measure the outcome results yet?

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You are correct, although asking for chemo and getting it, not so easy. One has to establish a rapport with the Oncologist. We have many discussions about clinical trials, SOC, the works from other Oncologists, etc.

For instance, Dr Sweeney, a colleague of my Oncologist talked about Docetaxel and ADT: onclive.com/onclive-tv/dr-s...

Will be interesting measuring outcomes, since I'm currently PSA <0.02 and T <3, perhaps the bone scans may reveal something down the road...

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MO tells they usually take a PSMA PET CT after 6 cycles to see the results.

Do we need to take a similar PSMA PET CT right before starting chemo? (We only have a normal PET CT scan from 3 months ago)

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Whatever was used to determine baseline mets should be used at the end of therapy.

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Some aggressive MO's are recommending adjuvant chemo for "non-metastatic hormone-sensitive" PC. This study claims an added 4% OS.

ascopubs.org/doi/full/10.12...

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That’s for localized PC. No studies yet on all three for APC but I’m trying it. My MO thinks it’s a good idea. Ucla second opinion said makes logical sense but they won’t prescribe without a clinical trial.

Schwah

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Correct, as I said "nm-hs" disease, for which I'm pointing out, agressive Drs like Scholz are also recommending a short course of 4 rounds of Taxotere. He's my MO as well, and we've had discussions about it, but I decline to do CT because my pathology fits more closely with the European studies GETUG-12, SPCG-13, and SPCG-12 that showed no benefit of adjunctive CT, likely because these cohorts had less aggressive Gl-7 or below disease.

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I agree with you. IMHO, a 4% increase in 4-yr overall survival does not justify chemo, but that is very short f/u for high-risk men. And those other studies show no benefit. I think that mets are required before docetaxel is useful.

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We were pretty much offered the same thing... back story - my husband was diagnosed end of May this year and was put on eligard (like Lupron?) and the plan was to resort to chemo when the eligard stopped working, but due to some evidence that taking Chemo early extended your life expectancy (from 3-4 years to 4-5 years) we decided to go with both chemo AND eligard. But then we heard that taking zytiga straight away INSTEAD of chemotherapy gave an even longer life expectancy (an average of 22 months on top of the 3-4 years in the trials). Sadly, we would have to pay for the zytiga because my husband wasn’t yet castrate resistant and Australia’s PBS only covers zytiga after the other hormone therapy’s stop working. I am so glad we did though. I am pretty sure the chemo would have made him much sicker (zytiga has not really had any side effects that we have noticed - the only side effects were from the eligard before he started the zytiga) and his immune system is not being compromised (I had initially made all the family have their flu shots in preparation for chemo) and there is no risk of neuropathy (which my mother still suffers with years after her breast cancer chemo). And if the zytiga stops working, you still have chemo up your sleeve. I am just a science teacher so I am only relying on advice from doctors and the research I have done since diagnosis.

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Hi thanks for sharing your experience.

How has the progress been with ADT + Zytiga so far? And what’s his age?

Like you said, I agree that the benefits of Zytiga do seem nice. It’s definitely less toxic than chemo.

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We are into the second month of zytiga and so far have only had blood tests to assess how the progress is going (personally, I don’t have a great deal of faith in the blood tests as my husband’s PSA was always low; it was urination issues that made us look into whether he had cancer, not the PSA). But as of a recent blood test, things seem to be going along well. My husband is 70 but a very healthy 70-year-old. Lots of exercise, eats well, non-smoker... he ticked all the boxes. I figure that the longer we can hold off the PC, the longer we give the medical world to come up with something magic. Since my husband’s Gleason score was a 10, apparently there is a high chance the cancer is a genetically triggered one, and if I understand things correctly, this often means immunotherapy is effective, so we went with zytiga instead of chemo to ensure his immune system was as good as it could be in case we ended up going with immunotherapy. But in the weekend I heard (from a nurse!) that someone in Sydney (?) is now a paraplegic because his immune system went nuts when he tried immunotherapy... so naturally I am looking into that story to see if it is true. But I digress... another thing about zytiga is that all the studies have been with people taking it on an empty stomach, so the dosage is given based on taking the medication at least 2 hours after a meal and an hour before eating anything. Apparently if it is taken with food, you don’t need as much (I have heard you need four times as much on an empty stomach because the food helps absorption). We looked into changing how we take it so we didn’t have to take as much (especially because it is so expensive) but our doctor said it was much harder to get the dosage right with a meal, which made sense... when you take zytiga it essentially stops adrenal glands from producing adrenaline too, so you take ANOTHER tablet to fix this problem! My husband has always hated taking tablets (even Panadol - he’d rather have a headache) so the number of drugs he has to take plays in his mind. But none of the tablets seem as bad as chemotherapy. My mum has burning feet all the time as a result of her time in it. But she even lost her fingernails (not just her hair)!

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My personal, non-professional opinion is you want to do chemo first if you can. An ALP of 655 is still seriously high, and while my ALP was coming down on ADT alone, it dropped faster after starting chemo. Literally the week after each infusion there was a noticeable drop in ALP that leveled out and then dropped again the week after the next infusion.

I did 6 rounds of Docetaxel and am now on Abiraterone. PSA <0.01, ALP in the 30s, now back to work full time and training for a half marathon to celebrate the coming anniversary of my diagnosis. I'm just over 5 months past my last chemo infusion, an d generally I neither look nor act like a cancer patient, except for the increased anxiety and a tendency to nap a bit more.

Several caveats for my personal case: My cancer is intraductal carcinoma, which seems to not put out a lot of PSA until it's well out of control, and I'm also on Xgeva, Celecoxib, Bupropion, Atorvastatin, and frequently take Melatonin at bedtime, all of which have some scientific evidence which implies possible anti-cancer effects. I've cleaned up my diet a bit, but still have a significant sweet tooth and am not a vegetarian, though trying to focus more on plant based foods when possible (specifically noting that dark chocolate is vegan if it doesn't have any milk ingredients :-).

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Hi Tom,

I have been following your story and so far the results have been great congrats!!

How often are you supposed to take Xgeva?

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I'm getting monthly injections, which is my MOs idea, not mine. The side effects just start to fade and it's time to get shot again. Ugh!

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Tom, did you have a latest scan right before chemo? And I assume you had a PSMA PET scan post 6 cycles do Docetaxel. Is that where you noticed improvement in the mets?

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Haven't had a PET scan, just an MRI, CT, and bone scan around the time of diagnosis, and then another bone scan just after chemo which showed improvement. Even though bone scans are relatively crude, it's not like you need a microscope to find my cancer.

I did asked my MO why he didn't feel the need to do another CT scan, and it was because my bone scan, blood work, and symptoms all showed improvement, so he doesn't expect there would be anything new on the CT scan. I have mixed feelings about this. I'd like the piece of mind that nothing is silently developing in the soft tissue, but on the other hand a CT scan is more radiation, and the prep drink gave me awful diarrhea.

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Sounds right to me, Xgeva shot would help with the bone Mets.

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Hi Larry, can you please tell me how Xgeva helps with bone mets? Like my understanding is it protects from possible fractures.

Dad took a shot of Xgeva last month. While the Urologist recommended every month, the MO told us once in 6 months is enough.

Any thoughts?

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Is osteonecrosis a side effect of Xgeva? I have read that women get it in the jaw & then have issues eating... frightened the life out of me!! Not sure - maybe men are less likely to get it than women...

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I had 3 shots of denosumab ( Xgeva ) over a 6 month period about 2 years ago, and while on Zytiga and many previous years of ADT. One shot per 6 months is usually plenty. Docs tend to over prescribe it. I then got a sore lower jaw, right side, and it was diagnosed by dentist and oral surgeon as beginning of lower jaw necrosis, much more common for men on ADT than for those not on ADT and who have it to keep up bone density and bone strength. So I refused to have any more Xgeva.

I would accept a dose now though, and will discuss it with my doc at our next meeting for lucrin injection.

I also had one shot of Aclasta, Zelodronic acid in about 2013, which has a lasting effect, and too much of that also causes LJN. The boost to BD from Xgiva was very small, and did not prevent Pca bone mets progressing. Best thing for bone health seems to be to walk a mile every day, but also keep BMI < 25. Its the repeated impact on bones that triggers the body to keep the bones strong.

Patrick Turner.

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Patrick do you believe that Xgeva or Zoledronic acid can help in healing bone mets apart from bone strengthening?

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I really just do not know. These bone drugs can give doubtful outcomes IMHO, and I feel maybe a man gets better bone health if he walks a mile a day, at least, and has a real good diet. I am nearly certain that if my bone density was measured now, I would be 25% below normal. whatever that is for men who have not had ADT. I'm 72, and cannot expect to have the bones of a 25yo.

Patrick Turner.

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There was this study, ascopubs.org/doi/10.1200/JC... that showed a survival benefit for Zometa combined with Celebrex in metastatic men. It's thought this would apply to Xgeva as well. My personal take is that each provides a small survival benefit that isn't statistically significant in a small study, but when you start combining such things it's easier to achieve statistical significance. There's a similar benefit with Celebrex and Lipitor: ncbi.nlm.nih.gov/pmc/articl...

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What about LU 177?

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Xgeva is supposed to strengthen the bones and help heal the Mets. I’ve been on them monthly now for 36 months along with a lupron/eligard shot. Working for me so far

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At the time I had to make this decision I was Stage 4 oligometastatic, hormone sensitive, undetectable PSA. When I was diagnosed in 2015 early chemo or Zytiga was not an option. I was on Lupron and Bicalutamide for over a year before the opportunity to add early Zytiga or chemo first became available to my class of PCa patients. At that time, my Mayo M.O. discussed my options with me. With his guidance, I opted for chemo because I was (relatively speaking) a young age 66, otherwise still fairly healthy (still golfing 3 times a week, doing yard work, etc. without any limitations), and better able to handle the potentially harsher side effects of the chemo. Also, at that time there were still some questions as to whether the Zytiga would be covered by Medicare and Blue Cross. Finally, the chemo was “6 and done” while The Zytiga + prednisone was long term, and has its own set of side effects. I did 6 cycles of docetaxel at 3 week intervals. It wasn’t a walk in the park, by any means, nor was it as horrible as some have made it out to be. I had most of the usual side effects to one degree or another at some point in time during the course of chemo, but they were tolerable, and all resolved in a reasonable amount of time following the completion of the chemo. Some of your other responses have indicated similar experiences.

Although we are all fighting the same disease, it presents itself differently to each of us, and we all have variables in our biology, genetics, age, overall health, comorbid medical conditions, etc. that make our cases, and the decisions we make on our treatment plans, individual and unique.

As for me, in my situation, I am glad I opted for the early chemo. Best wishes to your father! 😎

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Thanks a lot!! I'm glad to hear it all went well with you. And wishing you the best in your ongoing treatments.

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My husband did research on the taxotere dosage which is the same no matter how tall, heavy, skinny etc someone is. His first dose was the normal dosage of 75 mg/m². Predictably his WBC went very low and his MO wanted him to do add Neulasta. Husband didn't want to add an additional drug so discussed with MO. MO agreed to try a 20% reduction of Taxotere for second treatment. His WBC remained in the low normal range. Third treatment was 10% reduction of taxotere and his WBC went low but not so low that Neulasta was needed. He remained on 10% reduction for the remaining three treatments. His PSA started to rise slightly 5 months after chemo and he started Zytiga in 12/2017. His PSA has remained undetectable. He then did Provenge March 2019. Gleason 4+3, three bone mets, lots of lymph nodes, PSA was 75 on diagnosis.

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Hi Union98,

Thanks a lot for the info. This is exactly what I was looking for - someone who reduced their dose a little.

Was he feeling better on the reduced doses from second cycle? And is it still effective enough to treat the disease as per your MO.?

And how much is too low / risky for WBC count?

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I'm pretty sure his MO wouldn't have recommended the dosage changes but he couldn't see a reason not try. Husband continued to work and play in his cover band while doing chemo. He had the usual side effects - hair loss, fatigue, low WBD, out of breath, a little edema in his ankles - but nothing major. No neuropathy which as a guitar player he was really worried about. He held ice cold coke cans during the infusion and sucked on ice chips which helped his taste buds. His bone mets melted away, replaced with new bone growth and two years after chemo he's still working and still playing in the band.

I'm sorry I don't remember the numbers on the WBC during that time period. I think the biggest concern on the chemo is that your dad will need to take any warnings from the MO seriously and be extra vigilant and get to the hospital/doctors office as soon as there are any signs of trouble. If he does do chemo, have him take claritin the day before, day of and day after transfusions (will help with bone pain if they have to give him Nuelesta) and make sure he's really well hydrated, again the day before, day of and day after to move the chemo through and out of his body.

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Just my humble opinion...Diagnosed in Nov 2018 ,PSA 162,multi mets to bones and lymph nodes. Started Lucrin, zometa and Zytiga. PSA came down to 0.232 in July. Was asked to seriously consider Docetaxel (6cycles) since late June to improve the situation in the longer term especially when the cancer had spread extensively. Decided to go ahead and now just started 2nd cycle today. I went ahead with the chemo treatment as I am relatively young,61 and would like to ensure any other cancer cells that could be 'hibernating' are also taken care of ...and so far the side effects are very managable.

Good luck. God bless

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Hi, so you’re on both Zytiga and Chemo at the same time then? And you were asked to consider chemo although Zytiga was working well? Seems like it’s the next new thing to combine both then.!!

And is the Zometa every month?

P.S - I wish you the best in the upcoming chemo cycles.

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I was on Zytiga, zometa and Lucrin ( once every 3 months) for the last 7 months and the PSA dropped from 162 to 0.232. The treatment is working well .

Started with docetaxel with Zometa & Lucrin (once two or three month) on Aug 14th without Zytiga. I am also taking Metformin and Prednisone on a daily basis. Would like to truly hit the PCa hard with whatever as early as possible. Will continue to update my situation. God bless

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I have been on Zytiga, Lupron n prednisone for the past year w great results .02 psa n 16 T. However I stopped taking the Zytiga and prednisone last month in preparation to start 6 sessions of taxotere next month. It is not SOC but I also like the idea of hitting it with another battering ram. Dark energy has been doing this but with Zytiga n prednisone. I will be following both of you. Good luck!

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Also, consider, combination therapy will have an effect, as cancer cells are continuously evolving...

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I am going to talk to my doc about it. I like the idea. As far as I know, there has never been a clinical trial combining them at the same time, so we will do our own mini trial!

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Yeah, same with me, i've posted similar post here...

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I would start chemo right away with bone mets, kill the demon now and he is young.

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Do the chemo first. Unless his body is weakened or there are existing co-morbidity, hit the cancer hard with full strength. The dosage is based on body weight. Of course I am biased as I had Taxotere alternated with Adrimyacin. Nine infusions each.

GD

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Thanks for the suggestion gourd_dancer.

Wow 9 infusions!! How did you manage with the side effects week after week? And did it show significant improvement post 9 cycles?

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Cherr. Nine infusions of Taxotere and nine infusions of Adrimyacin. Side effects manageable. I just took heart that the little bastards were dying and did not tax myself. My whole attitude was simple, don’t sweat the side effects, don’t worry, don’t fret, don’t go woe is me, don’t question why me, etc. Just stay positive that the infused poison, although affecting your body, is killing the little bastards.

During the six months, infusions on Tuesday. Worked half day Thursday; half day Friday; usually Saturday; full day on Monday. Infusion again on Tuesday. Since Adrimyacin is administered on a 24 hour pump, I did not work on Thursday of that week. Glad to have the two week break between the six week cycles. My employer was great. In my case, hit early metastatic lesions while my body was strong.

After the 18 cycles, Mets were fully resolved with new bone growth. After almost 15 years I remain with a PSA of <0.1. I was able to stop all PCa medication in Feb 2010. I was most fortunate to have been included in the clinical trial.

My last comment, if prostate and breast cancer are truly related in that they are both dealing with hormonal cellular changes, then why is the standard treatment for breast cancer include alternating Adrimyacin and Taxotere with tumor removal and irradiation, while not standard for prostate cancer?

In my opinion, the major difference is a prevailing attitude in men to not under go any type of chemo until failure of other medications all the while cancer is taking hold and last ditch efforts are too late when the body is weakened and the tumor burden massive.

We all wear different size shoes. And as such, out of the 56 trial cohort responses, the nine complete responses all had something in common, early chemo immediately after failed primary treatments.

You might up on Dr. Robert Amato’s published papers on Chemotherapy with Hormone Therapy trial. And share with your Medical Oncologist for his input. However, I once had a community oncologist tell me that the protocol will never work. Yet, a new Urologist told me that he had read the study and emphasized that I was most fortunate to have entered the trial and one of the ones with complete responses.

BTW, when I was told that I had metastatic lesions, both Radiation a Oncologist told me the standard was Lupron until it no longer worked to suppress the disease. I asked both the most important question of my life, “Doc, if you were in my shoes, newly diagnosed with metastatic prostate cancer, what Wouk day you do? How would you treat!” Both of them told me that they would find the best medical oncologist available that researched advanced prostate cancer. And, not an oncologist who treated all cancers. I would want someone who is at the top of their game knowledgeable about what is new and what their research showed.

And that my friend is the direction I went - academia and research. I wish you the best.

GD

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Hi GD,

Absolutely, about having an Medical Oncologist with direct expertise in Advanced Prostate Cancer. That stays on top of research, the latest diagnostics technologies and *actually* spends time with the patient.

I can ask a question about anything PCa and my doc fires back with a thorough response! Was ready to get into a heavy discussion when asked for chemo, but the doc said - I agree!

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I did chemo (taxotere) prior to Zytiga. Chemo is not that bad. Only one rough day 2-3 days after treatment. He is 53! I was 62 and had no problems. Worked full time but I did plan and take a vacation day 2-3!days after each infusion.

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