PLEASE HELP ... REALLY NEED YOUR INPU... - Advanced Prostate...

Advanced Prostate Cancer

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PLEASE HELP ... REALLY NEED YOUR INPUT ... THANKS !

Nous profile image
Nous
16 Replies

Hi Everyone ...

I need some advice please ...

A. current age 70 ... diagnosed at age 69; January 2020 ... Gleason 8, clinical stage T3a,Prostate volume 41 ml ... "high risk adenocarcinoma of the prostate with Gleason score 4+4 in 5 cores and 4+3 in 2 cores for a total of 7 out of 12 cores positive, PSA from March 17, 2020 of 69.2 and digital rectal exam compatible with T3 disease"

B. 26 June 2020 ... PSA rose to 91 ... so started ADT; Eligard ... one shot every 4 months for two years

C. 21 Sept 2020 ... PSA test and DRE and ultrasound done ... results were ... PSA 0.48, clinical stage T1c, prostate volume 23 ml, doctor's report states: "DRE reveals benign prostate corresponding to clinical stage T1c ... ultrasound reveals normal bilateral seminal vesicles and normal neurovascular bundles and prostatic capsule is intact"

D. 26 Oct 2020 ... did EBR(VMAT) ... 70 Gy in 28 fractions to prostate and 50.4 Gy in 28 fractions to pelvic lymph nodes

E. 14 January 2021 ... PSA 0.11 ... Testosterone 0.5

F. 23 July 2021 ... PSA 16.07 ... Testosterone 0.1

G. 17 Sept 2021 ... PSA 38.97 ... Testosterone 0.1 ... CT Scan of abdomen and pelvis results: "No evidence of intra-abdominal metastatic disease" ... Bone Scan results: "moderate focal uptake is seen within the T7 vertebral body and within the right iliac crest anteriorly; both new from the previous bone scan done; suspicious for metastases"

Here is what I would really appreciate your input on ...

1. Please tell me what YOU feel is happening here and why YOU feel that way ?

2. What treatment would YOU recommend and why would YOU recommend it ?

3. The latest bone scan said "suspicious for mets". I have read here; on our forum, that bone scans can be inaccurate and that only PSMA is truly definitive. All we have where I live is bone scan; no PSMA. I prefer to be treated based on surety and not suspicion. What if they are not really mets ?

A. Do I qualify for Salvage Radical Prostatectomy ? ... If not; why ?

B. Do I qualify for Cryotherapy ? ... If not; why ?

4. My radiation oncologist is recommending enzalutamide plus SBRT.He wants me to participate in a study: "The Role of SBRT In The Management on CRPC With Oligometastases".

A. What has been your experience with Xtandi / enzalutamide ? (I am not excited about playing Russian roulette with possible hypertension (12%), electrolytes imbalance, seizures, posterior reversible encephalopathy syndrome, ischemic heart disease, and falls and fractures.

B. What are your thoughts /experiences regarding using aplutamide or darolutamide or abiraterone instead ?

C. What are your thoughts / experiences on doing abiraterone first and, if it fails then enzalutamide versus ennzi first; abi second ?

C. What are your thoughts / experiences regarding SBRT versus using standard of care / palliative radiotherapy in mCRPC ? My radiation oncologist is saying that the SBRT could be curative while the other would be palliative.

Thank-you all for helping me by sharing your thoughts/ opinions/experiences/ insights. I really need and value your input as it will really help me to make the decision that I must make. Thanks !

Nous :)

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16 Replies
spinosa profile image
spinosa

I don't know as much as many people here, but my case has several parallels with yours. Despite being T3a, I had surgery anyway, at the Mayo Clinic, Rochester - they balked, as first, but then agreed - without tumor load, things could be slowed down. Post surgery, I went 12 years before my PSA rose, and it was 3 more until it hit .2 - then, I had 40 radiation treatment. That was 3 and 1/2 years ago. So, I'm tripping along, aware that I'm only as good as my next test

Nous profile image
Nous in reply tospinosa

thank-you Spinosa for sharing that with me ... wish i had done what you did ... wish i had pushed-them to do surgery ... because recently i read a paper from Mayo which says "cT3 prostate cancer; a disease in which the cancer has spread locally from inside the prostate to immediately outside it, is operable and has 15-year cancer survival rates of almost 80%" ... thanks again Spinosa and best wishes ... Nous :)

Tall_Allen profile image
Tall_Allen

1. Radiation+ADT failed. Castration resistant and metastatic (mCRPC).

2. Systemic treatment with docetaxel or Zytiga or Xtandi. Zap metastases too.

3. Bone scan/CT is fine - coupled with your sharp rise in PSA - you know you have metastases.

a. no prostate salvage is indicated because you are metastatic

b. as above

4.Yes.

a. Try it and see.

b. apalutamide and darolutamide are not approved for mCRPC.

c. Zytiga before Xtandi may give more time before resistance sets in. Docetaxel in between.

d. No evidence that it is curative, but if safe, why not?

spinosa profile image
spinosa in reply toTall_Allen

yes, I SHOULD have stated I had a bone scan and MRI (and, was told, that because nothing showed up, didn't mean I didn't have metastastes...

Nous profile image
Nous in reply toTall_Allen

thank-you Tall_Allen for really helping me in my decision making ... in your kindness you do that for so many others too ... i feel that all of us group members are very blest to be able to call on you for your invaluable knowledge and insight ... best wishes ... Nous :)

tango65 profile image
tango65

May be I did not understand correctly your posting.

I understood that your doctor believes the cancer is already castration resistant and metastatic (which is correct, since PSA is going up with castration levels of testosterone and bone scan shows distant mets).

He wants to initiate a systemic treatment of ADT plus enzalutamide and because there is only 2 mets in the bone scan he qualifies your cancer as oligo metastatic (less than 4 mets), which is also correct.

It is my impression he is not thinking in doing salvage SBRT in the prostate, but treat the mets with SBRT and add enzalutamide to try to control the castration resistant metastatic cancer.

Nous profile image
Nous in reply totango65

hi tango65 ... thank-you for sharing your input ... you understand my situation 100% in everything you wrote ... thanks for the idea of talking with my RO about doing salvage SBRT ... best wishes ... Nous :)

tango65 profile image
tango65 in reply toNous

i wish you the best of luck on your journey!!

Nous profile image
Nous in reply totango65

thanks tango65 ... i wish the same for you :)

kaptank profile image
kaptank

Like TA says, abi first, then chemo (docetaxel), then enza. The problem with abi then enza is cross resistance which is even worse for enza then abi. The docetaxel restores to some extent responsiveness. Regarding SBRT, why not? But I doubt it can be curative. It can buy time (sometimes lots). The beast is loose. Surgery on the prostate is not possible after radiation and has no point anyway.

Nous profile image
Nous

thank-you kaptank for sharing your insight and for echoing TA ... that helps me an awful lot ... best wishes ... Nous :)

BonoVox1 profile image
BonoVox1

Hi Nous, all I can tell is from my experience.I am on ADT and enzalutamide, Apparent mets that seem inactive and psa at 15 going down it was over 400.

I feel really good at this point 4 years in.

I also take a bunch of supplements, Artimisinin, Ubiquinol, Ashwaganda, Boron, and Astra8, all these support a healthy immune system.

I have decided to own my cancer and search for alternatives as well as the ADT and Enzo, as far as Enzo goes I have a small amount of fatigue but no real side effects.

Some folk dont like to hear this but I am a Christian and believe in Healing Prayer, I firmly believe God has shown me these supplements and despite what my Oncologist says I believe old age will get me and not Cancer.

God has decided the length of my life not a Doctor.

God bless you!

Nous profile image
Nous

ah ... thanks for sharing that with me BonoVox1 ... what you shared really encourages me ... like you i believe in both alternatives and supplements as an add-on ... like you my Christian faith gives me such strength ... i believe that God does not do things to us but, He always does things for us ... Romans 8:28 ... and i agree ... "God has decided the length of my life not a Doctor." ... thank-you BonoVox1 ... may God richly bless you too ... best wishes ... Nous :)

in reply toNous

🙏amen

Radtech40 profile image
Radtech40

Bone scans can show uptake where there is arthritis or inflammation. If it is mets there could have been micro metastasis and it is now readable on bone scan. Did he mention anything about Xgeva? My father was first diagnosed 6 years ago stage 4, bone mets everywhere…he started xgeva monthly and Lupron and some of the bone mets are not there anymore, The remaining ones are in remission still. Radical prostatectomy is not an option with mets.

SBRT is good and is used for a few areas. If there are alot of bone mets which it doesn’t sound like you have, they use Xofigo for bone mets which is infused and treats all bone mets at once but labs can go off the charts, anemia, liver, etc. SBRT has way less side effects.

My father has had bone mets in his ribs, iliac bones , spine, skull, scapula, humerus , etc for 6 years, he’s still active, all still in remission.

Using abi or enz type drugs control the cancer by starving it of testosterone and at the same time zapping it with SBRT. This sounds like the best plan.

I wish you the best, stay positive. My heart goes out to all men that are dealing with this, I’ve watched my father go through alot and now my brother was diagnosed today with Gleason 10 at 62 yrs of age, 11 of 12 cores positive and T2c, psa 14.8 and it was below 4 last year, this was found elevated on routine labs. Still in shock it’s hit our family again. God bless and keep us posted.

Nous profile image
Nous in reply toRadtech40

thank-you Radtech40 for taking the time to share valuable info with me that i was unware of ... about Xgeva ... your thoughts on SBRT ... about Xofigo ... your thoughts on treatment with abi or enzi and SBRT ... your Dad's history; which encourages me ... and ... your good wishes and blessings ... mat God richly bless you and all your family Radtech40 ... best wishes ... Nous :)

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