On behalf of my dad, no chemo yet - doc says not yet, please help

Father

Age: 72, diagnosed in 2014 ( 69 )

Diagnosed: 6/6/2014 - PSA 187

Place: Canada - Govt Health Care System

Report reads

Prostate Needle Biopsy x 10

Right mid medial: 5mm Length of Gleason 4+4=8/10 adenocarcinoma

Right mid lateral: 1mm Length of Gleason 4+4=8/10 adenocarcinoma

Right mid apex: 1mm Length of Gleason 4+4=8/10 adenocarcinoma

Left base lateral: 15mm Length of Gleason 4+5=9/10 adenocarcinoma

Left mid medial: 5mm Length of Gleason 4+4=8/10 adenocarcinoma

Left mid lateral: 12mm Length of Gleason 4+4=8/10 adenocarcinoma

Left apex: 12mm Length of Gleason 4+4=8/10 adenocarcinoma

Right base: 5mm Length of Gleason 4+4=8/10 adenocarcinoma

Left base medial: 2mm Length of Gleason 4+4=8/10 adenocarcinoma

No Evidence of extra prostatic extension

Right base: benign prostatic tissue

1) The Stage is T3 N2 M1

2) Bone Scan: Metastatic diseases of the spinal column and pelvis, in particular the right acetabular region, was identified

3) CT Scan: Extensive sclerotic bony metastatic disease B) Bilateral iliac and pelvic adeopathy, suspicious of metastatic disease C) Enlarged prostate with enlarged bilateral seminal vesicles

About my father:

-Never took a pill in his life, never even had a headache

-Still has all his hair, and no glasses

-Works as a gas station attendant - 5 days a week, 7 hrs. Shifts (has worked all his life and basically keeps himself busy at home too

-Very positive person

-Drinks glass or 2 of milk since a kid, and since many years milk with raw eggs

-Drink 1 glass of wine everyday

-Eats right and weighs about 150 lbs

We were obviously shocked to hear about the cancer, my father still can't believe it. The urologist basically put it this way

( back in 2014 )

A) Bad Cancer T3

2) Its terminal

3) Start with Flutamide 250mg x3 time a day for 1 month then Lupron (22.5mg X every 3 mos. for 1 year) after 2 weeks of these pills

4) No Surgery

5) Radiation after 6 mos.

(maybe _

5) Gave us 3-10 years

His PSA

Diagnosed:

PSA

6/6/2014 - 187

Started Lupron with 1st Urologist ( no chemo recommended, only HT )

06/09/2014 - 25

16/01/2015 - 5.1

13/04/2015 - 5.2

07/072015 - 14.4

At this time, our urologist retired, another one who replaced him ( who was younger ) recommended HT + Chemo but we moved so since we were going to another urologist. we went to one who was more experienced and right close to our house

He too said why chemo? not now so out of 4 people - only 1 said Chrmo + HT and

GP ( Shouldn't do Chemo )

1st Uro ( Shouldn't do Chemo till retired

2nd Uro ( Should do Chemo )

3rd Uro ( Shouldn't do Chemo )

Started 6 months Eligard and Bisphosphonates but it didn't help as PSA was going up and now the Urologist sent us to Oncologist and recommended Chemo

1/02/2016 - 79.54

Oncologists said will chemo in side picked, radiation of any pain else not to and best to get into Clinical Trial program, because if we don't then we can only choose 1 medication ( Xtando or Zytiga ) so if one fails, we have to pay for the other one but we are on trial then if one fais, we get another - but for this we have to get PSA test every month and CT Scan, Bone scan every 2 months

Started Xtandi

01/03/2016 - 75.55

29/03/2016 - 76.30

26/04/2016

- 81.98 ( Started Xgeva monthly )

24/05/2016 - 62.01

20/06/2016

- 72.13

18/07/2016 - 73.12

15/08/2016

- 68.56

13/09/2016 - 72.58

11/10/2016

- 111.40

07/11/2016 - 84.9

07/12/2016 - 71.1

03/01/2017 - 69.3

31/01/2016 - 79.8

Now as you can see Xtandi has basically hasn't brought down the PSA, it goes up and down around the same number. Around 6 months ago, I kept talking about Chemo and I was told that Chemo can only give 3 months and it will toxic for his liver. They are happy that his CT Scans and Bone Scans haven't shown any further damage and not worried about PSA as long as he has no pain. They feel, he is working so thats good and chemo might make him more tired as compared to his comparative fut life now. They said they will see if PSA goes up, might switch to Zytiga

I am confused what to do here, I keep reading that Chemo + ADT is better however the doc says not 100% and that too studies mention at start of therapy but I hear that docs comment about side pocket is stupid and he should be given chemo when he is fit

Then I read some comments where people haven't done chemo. Is there anyone here from Vancouver who can recommend? or others

17 Replies

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  • I'm in Seattle, but that doesn't work with your Canadian health care. My oncologist who deals exclusively with prostate patients, always says making treatment decisions is much like a 3-leg stool -- scans, how I feel, and PSA, with the latter generally the least significant. I went through both Zytiga and Xtandi before scans showed progression, then was on various chemo for 22 cycles. Currently off chemo, trying bipolar androgen therapy. Continue to feel well and have plenty of energy. Most recent PSA was down to 3000. I am 66 and was diagnosed 4 years ago with a PSA of 840 and Gleason 9. Wishing you all the best.

  • Thans for replying, so ur oncologist never revommended Zytiga + Chemo together? Everywhere I read its like I am doing a crime by not doing so doc doesnt wanna do chemo saying its toxic. I cant covince her, I am suprised by your high PSA - and glad to hear u doing fine with that number.

  • Usually Oncologists based in Tertiary Care Centers where there are Medical Schools start with Lupron or Casodex, adding a small dose of Predisone.

    With either Lupron or Casodex the next move is to Maximal Androgen Blockade by adding an AntiAndrogen to the treatment plan. This usually brings a soaring PSA down within several months.

    Chemo should not be necessary until a later point in time as most first time ADT patients will respond. There are some very aggressive cases requiring further effort but as long as you have a competent Oncologist you should be able to face the disease with the best help available.

    Good Luck and God Bless!

  • I am not advising you on what to do. Just to give you info on what I did. I got diagnosed in 10/2010 with a Gleason 8. First treatment I got was the Lupron, which I am still on today. Next I did chemo cause the cancer went to my pelvis. Then did a high dose seeds to my prostate, external radiation right outside of the prostate and radiated the pelvis where the lesion was. Today I am taking Xtandi, Zytiga, Xgeva. Still feel great. I am 68 yrs. old. Thanks to God, I am still undetectable. Hope it doesn't come back !!

    If your oncologist is in a hospital, they can't give you chemo because it 's not their protocol. You can only get chemo from an Oncologist who has his own clinic outside of the hospital. That's what I found out after getting second opinions from Hopkins, Mayo, Sloan Kettering, MD Anderson, UCSF.

    The others here can correct me if I'm wrong. Since I'm still okay, I'd say that I wouldn't have done my treatments any other way.

    Good luck. I hope the others here can give you their experiences too, to help you.

    Wilfred

  • How is Xtandi+Zyta together

  • I feel fine taking Xtandi and Zytiga together. Some people say that one should not be taking them together. Two top doctors prescribed me those medications. I've been taking them for a few years now, along with Lupron and some other medications. Every one reacts to the meds that we all take differently. I think after 55 yrs. old, we have to get into exercising so if and when cancer or any disease hits us, our bodies can take the medications that the doctors prescribe us. My thinking is that I have to continue slow jogging and working with weights throughout my life if I can.

    Wilfred

  • Thanx, my query was more leaned towards Chemo - my Onco says only if Zytiga and Xtandi fails or doent work anyore. But I keep hearing Docax + Xtandi helps, their argument was only at start which our first urlogists didnt as he said no 100% study

    My dad is only clinical trial which gives him 2 lines of treatment Xtandi ( if fails ) then Zytiga - this is Canadian Health Care, we dont pay ouf pocket

    So my query to all is is it normal or we are missing out of not having any Chemo now? as my onco says no, some said get it done pvtely, I can't work out of thesystem liike that

    We tried to get apppt with Martin Gleave, ( Director of Uro, Onco ) here in Vancouver, lets see, but out GP was annoyed for referral that the system works the same so I am really confused, but worried that I should try an inquire as much

    So folks, have any or many use chemo at the end when Zytiga, Xtandi fails - I know many are from US, but things work differently in Canada

  • Chemotherapy is given in licensed, inspected, clinics. Many different clinicians provide chemotherapy. Oncologists are but one of a number licensed to provide biohazrdous substances used to treat human beings with life threatening diseases.

    All Medical Schools and their teaching hospitals provide chemotherapy. All Medical Schools and their teaching hospitals provide Clinical Trials. All teaching hospitals, community hospitals, and district hospitals are required by their states and by the Joint commission on hospital accredation to provide such services and provide the necessary physical plant or clinic where such biohazards may be utilized in order to qualify for federal, state, or third party indemnification.

    All Medical Schools are required to provide Institutional Research Review, Human Studies Research Review, and supervision subject to audit by the appropriate Federal Agency, particularly the Office for Protection from Research Risk, the NIH, and other Federal Agencies.

    Violations of these standards including the use of a biohazard in an unlicensed physical facility, including a physicians office not inspected as a clinic may be punishable by fine, loss of license, or by felony prosecution.

  • Just to clarify my above statement. All the hospitals would not give me chemo cause I wanted it early in my treatment plan. They would give it later when I have failed all the other available medications to fight the cancer first and then to basically take away pain at the end of my fight. In other words, palliative care. Only my doctor who had his own clinic agreed to giving me chemo early on in my fight against my cancer.

  • Hi there. I started Androgen deprivation therapy a couple years ago and my urological oncologist at UCSF suggested that I use prophylactic chemotherapy at that time. He said there was a good clinical trial that had recently had results published which convincingly showed strong effects for improved survival by starting chemo in conjunction with the beginning of ADT, rather than waiting for the cancer to become castration resistant. I kind of think of it like stunning the cancer with ADT, and punching it in the face with chemo to knock it down; rather than wait until it wakes up from the ADT and starts fighting back.

    I can't find related articles right now, but in the past I have read about this. It's out there somewhere, and it was not a small blip: it was a significant study. My impression is that it really has been changing the standard of care in this direction. I have seen several conversations on this website with others who have taken this route.

    I had six sessions of docetaxel, 3 weeks apart. I began chemo about a month or so after starting ADT. I had one bone met, and several tumors in my lungs. With the combined therapy my PSA dropped to undetectable (from a high in the 20s before treatment), and I think the scan results following chemo indicated that the tumors in my lungs shrank by at least 50%.

    I am still on ADT, and my PSA is still undectable at this time. May that continue!

    I am in my 40s, so obviously younger than your father. The impact of the chemo was kind of like having a really bad flu for several days after the treatment... except not a flu. It was a weird kind of discomfort, but a flu is the closest I can come to describing it. I felt like shit. I was also given steroids in conjunction with the chemo, which I thin helps manage the body's inflammation response to chemo (daily predisone through the whole chemo treatment, and another very strong steroid that I would take for the few days around each infusion... these made me very wired and super wide awake. It was almost fun to just give in to it and get up in the middle of the night to hang out and read or watch a movie.) But I did not seem to suffer any complications beyond the immediate impact of the chemo. My hair did start to thin, and I shaved it all off. Of course there could be other considerations for your father because of his age and his particular presentation of the disease.

    It seems like you are managing the information around your fathers cancer even more thoroughly than I have been managing my own! That's really wonderful. Keep it up. And it seems like you should keep looking into this issue until you can come to a comfortable decision based on all the pros and cons.

    Good luck.

  • You may be referring back to the Stampede trial. My Onco had formulated it but I rejected it as didn't like the organising prof. My treatment plan works on same basis as Stampede. Hit early and hard. Works for me and thousands of others.Stampede results are published. David

  • But does STAMPESE ONLY works during start of treatment or anything and does t work Chrmo+Xtandi?

  • Look at the extracts from the study. I was recommended because I was too advanced for radio or surgery. Terminal more than incurable but back now to incurable.

  • STAMPEDE does not sound familiar. I will try to find the study though.

  • Stampede trial.org

  • I think this might be one of the articles: nejm.org/doi/full/10.1056/N...

    Maybe that is CHAARTED?

    Another one I found: europeanurology.com/article...

  • Were he to be diagnosed today, the "STAMPEDE" trial (europe) and the "CHAARTED" trial (sweeney, boston) would say chemo plus adt, for "high volume" disease (mets more than spinal), and no comment, for other situations. "No comment" because not enough data, but this does not keep many oncologists from using chemo earlier than previously, where the expectation is that chemo will be well tolerated. Where not tolerated, dose can be reducrerd, or treatment halted. Docetaxel is the trial chemo, but Jevtana may be the choice today.

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