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Susan&Steve
New Member


Date Joined Jul 2018
Total Posts : 4
   Posted 7/11/2018 9:33 PM (GMT -6)   
Hello,
My husband, Steve was diagnosed with stage IV, Gleason 10 prostate cancer with a PSA of 350 on March 6, 2017. He immediately began the Lupron injections and did 6 rounds of Taxotere. After chemo and the continued Lupron, his PSA was down to 1.7. We visited the Photon Treatment Facility in Knoxville, TN prior to chemo and were told with the lymph node involvement, he really wasn’t a candidate. After almost a year, we decided to change from Levine’s in Charlotte, NC to the Cancer Treatment Center in Atlanta and have been there for 3 visits. When they scanned (first time since initial scan at diagnosis) they found less involvement in the lymph nodes and still no evidence of cancer in any organs or bones mets. Steve has been on Zytiga since December and his PSA has been steadily rising and is up to 10.1. Any suggestions or questions we should ask at our next visit to Atlanta this month? We just don’t feel the Zytiga is doing the job. With the PSA rising, we are apprehensive about the scan. Thanks in advance for any advice👍
Susan

Post Edited (Susan&Steve) : 7/11/2018 8:37:15 PM (GMT-6)


InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8807
   Posted 7/11/2018 9:43 PM (GMT -6)   
Welcome to HW, sorry you need to be here.

I don't have any answers for you, but keep checking here, the folks with the advanced info will be along soon.

Andrew
I'll be in the shop.
Age 58, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17 .3 4/18
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Susan&Steve
New Member


Date Joined Jul 2018
Total Posts : 4
   Posted 7/11/2018 9:47 PM (GMT -6)   
InTheShop said...
Welcome to HW, sorry you need to be here.

I don't have any answers for you, but keep checking here, the folks with the advanced info will be along soon.

Andrew


Thank you so much! I’m not sure I’m responding correctly...using my phone with no glasses, but wanted to thank you😊

Tall Allen
Elite Member


Date Joined Jul 2012
Total Posts : 10286
   Posted 7/11/2018 10:01 PM (GMT -6)   
That was a great response to chemo; that and the Zytiga have shrunk the cancer to the point where the scan won't pick it up (but unfortunately, it's still there). They generally want to see some radiographic evidence of progression before they give up on Zytiga entirely. Sometimes he can get a little extra mileage by switching to Xtandi. Did his original bone scan show bone involvement? If so, Xofigo may be a good next step, perhaps combined with Provenge (they play together well). He can also re-do the docetaxel or upgrade to cabazitaxel. Sometimes re-challenging with Zytiga or Xtandi afterwards can be beneficial.

As for treating the prostate ("debulking"), that is experimental at this point. There are some good clues that it may still have some benefit:

https://pcnrv.blogspot.com/2016/08/is-prostate-specific-radiation-still-of.html

There are also several clinical trials that he may be eligible for.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3788
   Posted 7/12/2018 1:08 AM (GMT -6)   
How old is Steve ? How well did he tolerate the Dosetaxel ? You could try another few rotations with that and see how he responds..Then, as TA suggested, try cabazitaxel but be aware it can be more difficult to tolerate..One problem you will run into sooner or later it that many of the advanced treatments available also carry advanced price structures..The insurance companies tend to push back, approvals can be hard to get...Keytruda, one of the new "miracle" treatments can be very effective IF, and it's a big IF Steve has the correct gene makeup. It might be worth being tested to see if this treatment might be effective for him. If so, it can be a game changer..Best of luck to you..
Age now 75 . Diagnosed G-9 6/2010. RALP, Radiation failed
Lupron, Zytiga, PSA <0.1 10/16 no change <0.1 5/17 PSA 1.6 Chemo or Provenge next..Sept '17, PSA now 9.2. ADT including Zytiga has failed. Will investigate treatment options. 11/17 PET/CT clear, but 4 new bone mets..Going to try Xtandi and see how I respond to that..3/2018 PSA now 54, chemo next. 5?10/18, PSA 200, Dosetaxel started..

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 669
   Posted 7/12/2018 4:59 AM (GMT -6)   
Susan,
I’m rooting like mad for Steve’s continued great response to treatment. Like Andrew, I don’t have anything of substance to contribute to the conversation. I suspect the high hits-to-responses ratio reflects that many members are in that same boat. I’m sure everyone who has read this thread has you in their thoughts.
—SP
Age 60 at dx 7/2017 biopsy G8 (4+4), 5/13 cores
RARP 8/2017 (Patel), pT3a N0 M0, 30% tumor; EPE+, SV-
PSA 1/2016, 2.9; 4/2017, 7.2; 9/2017 (post-RARP), 0.13; 10/2017, <0.05, 1/9/2018, 0.09, 1/31/2018, 0.10, 2/9/2018, <0.05(!?), 2/23/2018, 0.08.
Eligard started 3/2/2018. SRT started 3/12/2018, 72Gy
Caution: I’m not an MD and don’t know what I’m talking about.

rockyfords
Regular Member


Date Joined May 2016
Total Posts : 165
   Posted 7/12/2018 10:33 AM (GMT -6)   
Susan&Steve-

I am sorry for what you are facing- I too was metastatic G10 (nodes only) on diagnosis, just one year earlier. I can offer only my opinions based on therapy experiences I have had for the past two years- and of course my earnest wishes for a homerun therapy in your future.


First, I hope Steve is mostly asymptomatic and pain-free at this point, suffering only the side effects of ADT. Increasing PSA on Zytiga suggests castrate-resistance, but still in the early stages. As Tall Allen said, Provenge is a likely next therapy- some suggestion in the literature that it will be more effective in the earlier stages of CRPC, so I encourage you to require that treatment from your team ASAP. In my opinion, this option should have been presented to you already with PSA of 10 and rising on Zytiga(cranky old men seem to have a lot of opinions, eh?)


Second, you need to gain access to a tumor to obtain DNA sequencing through the Foundation CDx product (FDA approved for analysis of any solid tumor)- with only nodes affected this can be problematic, although there may be ways to get circulating tumor cells from the blood for analysis. Bring this up with your team (my MO and I have been waiting to get at a solid tumor; recent hematuria was due to tumor recurrence in the prostatic urethra, removed by TURP and now available for DNA analysis)- Certain genetic signatures will suggest new therapies, particularly mutations in DNA-repair genes and MSI-H status (microsatellite-instability high: an indication that the tumor cells make LOTS of mutated proteins, presenting them on the cell surface, something that KEYTRUDA seems to work well on with FDA blessing as well); you may be deemed suitable for PARP inhibitor therapy as well, which you can access in clinical trials, some in combination with KEYTRUDA-like therapies. Some people have hit the homerun with KEYTRUDA.


Third, try to estimate your PSA doubling time right now on Zytiga- if it is around 3-4 weeks, well things are more urgent- if it is > 3 months, you can be more deliberate in selecting a next therapy- I say this only because there might be therapy options to explore IF you are still early and asymptomatic, but the shorter doubling time can close that window pretty fast.


Fourth, and I say this only because of my experiences with this therapy, which is still in trial, read up on Bipolar Androgen Therapy (BAT). I chose to try this with the support of my MO, and not in a clinical trial context- some people can have really good responses to this treatment, others not, we really do not know the parameters for that. Some people can have an exacerbation of their condition- Dr. Sam Denmeade at JHU is running most of the trials for this therapy right now, there is a great webinar (February 2017) on the internet you can find by search. Did it help me? When I started the BAT, my PSA was 2.5 with a doubling time of less than 4 weeks; I had just failed on Xtandi- I am formally off BAT now (radiographic progression), my last PSA was 6; without BAT, assuming steady PSA doubling time, my PSA would be over 160 now. And the last 5-6 months have been mostly glorious as my fatigue melted away. It is scary to consider given the early stage of therapy development, and some might think me unwise to bring it up- but when you are metastatic G10 from the getgo, well you have a different set of considerations before you than most- we are very rare birds.


Last- I remind you to smell the roses. I know it can be hard, I struggle with it often, but it is important to be actively seeking opportunities to enjoy the moment- and let hope find you whenever possible.


my best to you both, be brave and be strong-

rf
Dx 62yo
3/16 PSA 19.4
Status G10 M1a
5/9 ADT PSA 29.5
PROSTVAC ADT chemo (x4) NADIR .05 10/4
5/1/17 EBRT 37.5 Gy prostate hematuria
PSA 6/27 1.65 off trial -> Provenge
9/19 Xtandi: 0.85; 12/12 Xtandi fail
1/10/18: PSA 2.5 ->BAT; 7/6 off BAT PSA 6.0
6/26 TURP, tumor DNA TBD

Cyclone-ISU
Veteran Member


Date Joined Oct 2014
Total Posts : 1078
   Posted 7/14/2018 2:45 PM (GMT -6)   

Hello Susan and Steve,

Just a note of encouragement and support from me ...

My treatments are shown below my signature in this post ...

I was diagnosed five years ago, with a PSA of over 100, and by the time I was diagnosed, the prostate cancer had crept into both of my lungs. Because of this, surgery was not presented as an option for me.

My treatments began right away, with an ADT shot --- I have been on ADT shots consistently, ever since then.

I pursued the "early chemo plan" as soon as clinical trial results were released, and I was in the first wave of fellows in this country to pursue the early chemo plan. This helped knock down my PSA even further than the ADT shots had done alone.

From there, my oncologist added ZYTIGA, and I have been on ZYTIGA for three solid years. It is continuing to help me.

This year, scans revealed a trouble spot in the prostate, so I underwent a series of radiation treatments, which has brought my PSA levels down again.

A few years ago, I began traveling up to Mayo Clinic in Rochester, Minnesota, because I needed some high tech scans that they offered to stay on top of things.

I also had genetic testing done on a tissue sample saved from the past in the lab, which might suggest future medications or treatments which could help my particular case.

Make sure you are consulting with an oncologist who specializes in prostate cancer with complexities.

There are oncologists now who can formulate specialized and individualized "chemotherapy cocktails" blending specific components into the chemo "recipe" which might benefit you in your situation.

Keep us posted --- we're here to support you --- we all stand alongside you ---

Handshake of care, concern, and support ~ from across the miles ~
CYCLONE ~ Iowa State University
PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, & currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & ZYTIGA & RADIATION
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing

Plate Blocker
New Member


Date Joined Mar 2018
Total Posts : 17
   Posted 7/14/2018 10:48 PM (GMT -6)   
Susan&Steve,

I am still fairly new to this forum and the prostate cancer world so my knowledge is definitely at the rookie level. However, in a very short period of time, I have learned that the members of this group can be counted on for support and insight. You can come here anytime to hang out with people who understand, share, and care,

We are all pulling for you.
Bx 6/2017: 60yo; PSA 5/15=.87; 5/16=1.46; 2/17=2.05; 5/17=2.95
2/12 cores: R apex 45% G8 (4+4); R base 35% G7 (3+4)
Prolaris score 3.3, less aggressive than average HIGH risk.
RP 8/17: G7 (4+3), 80% pattern 4; moderate tumor extent.
(-) EPE, SV, Margins; (+) PNI; LN: R=0/3; L=0/5.
PSA: 9/17=.00; 12/17=.00; 4/17=<.006

Susan&Steve
New Member


Date Joined Jul 2018
Total Posts : 4
   Posted 7/17/2018 7:26 PM (GMT -6)   
InTheShop said...
Welcome to HW, sorry you need to be here.

I don't have any answers for you, but keep checking here, the folks with the advanced info will be along soon.

Andrew


Thank you so much!

Susan&Steve
New Member


Date Joined Jul 2018
Total Posts : 4
   Posted 7/17/2018 7:30 PM (GMT -6)   
Tall Allen said...
That was a great response to chemo; that and the Zytiga have shrunk the cancer to the point where the scan won't pick it up (but unfortunately, it's still there). They generally want to see some radiographic evidence of progression before they give up on Zytiga entirely. Sometimes he can get a little extra mileage by switching to Xtandi. Did his original bone scan show bone involvement? If so, Xofigo may be a good next step, perhaps combined with Provenge (they play together well). He can also re-do the docetaxel or upgrade to cabazitaxel. Sometimes re-challenging with Zytiga or Xtandi afterwards can be beneficial.

As for treating the prostate ("debulking"), that is experimental at this point. There are some good clues that it may still have some benefit:

https://pcnrv.blogspot.com/2016/08/is-prostate-specific-radiation-still-of.html

There are also several clinical trials that he may be eligible for.


I am taking all this information with us to the visit next week! Thanks so very much!
Susan
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