Advanced Prostate Cancer
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My journey started March 2016

I have been a reader and sometimes give a small answer but haven't put my "details" out there. Since all of us are different in this fight we look for similarities. I was told I can't help if I don't input mine. This is me on my journey. Found out in March 2016. I went to my primary and told her that exhaustion / huge fatigue was ruining my day. No other symptoms . None . ALL functions "worked" very well. Did my blood work and the PSA was up (12) and then the story begins. Ironically the fatigue is still very prevalent.. Something now I will think get worse as I work the next stage options of HT. I have had about everything else thrown at this and though a low PSA-- doubling is every 3-4.5 months. This next blood work the first of July ('18) will put be back to single digit.

This is me.....

Michael (age 62 diagnosed) 64 currently. (2005 .. diagnosed Stage 2 Breast Cancer, radical mastectomy ,4 months chemo, 5 years hormonal therapy) now a survivor.

Prostate Cancer history: 2016 - March PSA 12 / Gleason 4+4=8 / no stage assigned /12 biopsies -3 benign 2016- June DaVinci Surgical prostate removal Surgical Pathology : pT3aNo Size of prostate : 4.5x4.5x4.3 cm wt: 72.4 g // Extraprostatic Invasion- Present // Seminal Vesicle Invasion -Not Identified // Perineural Invasion - Present Lymphatic/Vasular Invasion - Present No Incontinence after surgery . Semi Hard Erection function. Dry Orgasms PSA: 0 2016- Aug PSA : .024 2016- Oct PSA: .042 Waited 3 months to heal before radiation to begin 2016- Oct: [B] Radiation - 8 weeks 39 sessions started 2016- Dec: PSA : .080 - 8 weeks radiation completed on 12-23-16 actually doubles in radiation. Creates bowel and diarrhea issues . Learn to handle, but never have left.

2017 -Feb: PSA : .092 - PSA not returning to zero. PSA test every 3 months..

- May PSA: .190 -July PSA: .230 Full body scan done for tumors -none -Oct PSA: .320

2018- JAN PSA: .600

-MAR Full body scan done for tumors- none -APR PSA: .720 Discussion now Axumin next scan. HT by years end.

Oncologist says all indicators show very aggressive. Just low PSA. Expects PSA to eventually accelerate more rapidly.

Feel better now if someone else is out there who may need to ask "have you had this"? Thanks all for the help from all of you . More appreciative then I can ever say.

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So much knowledge here. I know you’ll get some help soon. 💕

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Robotic RP PSA 54, then 6 week check up, PSA up 10 points. Kind of backwards from what was expected. Started ADT drug Lupone. Brought PSA to 6.8 in four weeks. Chemo, Taxotere, added Xtandi after 4 cycles PSA climbed a little. 9 cycles PSA bottomed and stable at around 0.140. just had 3 1/2 month blood work. Best since before cancer dx. PSA still 0.137. If it starts to climb Axumin scan in line.

Why are you not already on HT?? Leads to fatigue, but really slows Pca.

Best of luck to you.

t

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Shooter1... thank you. Axumin is in line by years end. I am huge with fatigue. Holding back now primarily because of that with HT. I can sleep 10 hours now and wake, have a cup or two of coffee and go to sleep again. Unless the PSA goes up very quickly my oncologist will hold back.

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If you have to pay out of pocket for the Axumin scan you might want to wait a little longer. I paid $5K for the Axumin PET scan in December with a PSA of 2+ and for whatever reason whether it was a bad PET scan procedure, stale tracer batch or I was in the 10%-15% of patients that have early excretion into the urinary tract therefore obscuring recurrence in the prostate bed or bladder area, the scan was not useful. My PSA zoomed to 8 from 0.02 over 18 months (PSADT 2 mos.) and with no radiological evidence of metastasis I was able to qualify for the EMBARK Enzalutamide and/or Lupron clinical trial in April which is still enrolling if you can find a research center near you that has open positions available and your medical history permits you to qualify. I am age 50 and in excellent health and was in an intense exercise program when the PSA rocketed but now I have slacked off exercise and so has the PSADT oddly enough. I have heard differing clinician's opinions about starting ADT ranging from a PSA of 10 to 18 range. Some go on ADT as soon as PSA indicates biochemical recurrence. For now I am in the clinical trial assigned to the Enzalutamide (Xtandi) only arm. My urologist thinks my disease will be hormone responsive and the next question is how long. My father died 2 years ago at age 82 but managed to live 8 years after diagnosis with IV disease being treated with ADT and later chemo until ultimately he decided to end treatment due to side effects and back pain. He died 6 months later. He was a Korean war veteran so remembering you today dad!

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We will be most interested to follow your enzalutamide trial results, rust. Thinking of you and your father today and honoring his service. Les and Jan

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Thinking of you and your hero dad.💙

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Rust... first thank you for your fathers service. Our country is blessed by those who have sacrificed for what we have today.

I am keeping your information with me and review with my Oncologist. I have had 2 body scans and my co-pays hit hard. I told my Oncologist just that about the Axumin and its cost. I would like to give that scan just a little more time. I have run into a double edge issue. I was in a massive car accident in my late 30's . Recouped and got back going again after 5 major spine surgeries. Now my pain which I have from the fusions with arthritis and compression puts a challenge to wondering if bone met is there? I have tingling/numbness everywhere. I have lived with it for years. Another twist for my Oncologist.

Thank you....

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The Axumin scan will show uptake in inflammation in tissue but it is not so good in showing cancer in the skeleton where other tracers are more appropriate. I had an MVA as well 20 years ago but nowhere nearly as bad as yours. I don't know what to think of bone and or muscular pain and cancer. Is it cancer or side effects of cancer treatments?

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Age 79, dx April 2016, PSA 1500, GS 9. Chemo/hormonal treatment early. Vantas/Zytiga/Prednisone now. Xgeva soon. We will follow your progress. Go well, Michael. Les and Jan

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MichaelIDD: Sorry you have had to deal with so much and the journey continues. Two things I might offer, When I was faced with unknown recurrence that began last October which I picked up at very low level psa which I tracked monthly. The doubling factor was every 7 weeks - but my psa was under 1.0 for the next 4 months or so. Rather than go for the Axumen scan, I signed up for a much more sensitive scan - Ga68-PSMA-PET-CT which was on trial at a number of the big teaching institutions. I had my scan at UCSF in February. It did indeed light up a couple of pelvic lymph nodes just north of my previous 39 day course of IMRT. So I am researching SBRT (targeted) now for this and am now back on HT.

I think that the Ga68-PSMA scan and also one more even more sensitive are far superior to the Axumen scans. Check on Clinicaltrials.gov to see if there is a trial near you that you fit the criteria for. I note that you are a male breast cancer survivor, I am not one myself, but I know of a small group that meets regularly online and by phone in real time. Your experience might be helpful for others.

Thanks for sharing,

PK

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pkafka... thank you for reaching out. This like Rust helps incredibly!! I live in the Bay Area - grew up here. I will definitely review the option of the UCSF scan.

I AM very appreciative ..thank you.

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You might consider getting a second opinion from an expert who specializes in advanced prostate cancer at a relatively nearby research-type facility. You may get more treatment options there than with a local oncologist who sees many cancer patients of all types, and cannot possibly be at the cutting edge of all of them, all of the time. If you give a general idea of where you live, others here may be able to give some pointers.

With a personal/family history of breast cancer, and now prostate cancer, you may want to ask about the possibility of getting some inherited family genetic testing for things like BRCA mutations, or perhaps eventually some genomic testing of actual tumor tissue biopsies for genomic mutations. If you may be positive for one of the BRCA mutations, for example, your future treatment might benefit from something using a PARP inhibitor, such as Olaparib (Lynparza).

Perhaps also see sites such as:

pcnrv.blogspot.com/2018/02/...

foundationmedicine.gcom/

pcf.org/news/new-genetic-te...

myriad.com/genetic-precisio...

In no particular order, and there are no doubt more. An expert at a major institution will likely already have a favorite test, often covered by many insurances.

You might also ask about things like Zytiga, Xtandi, and Provenge, or possibly clinical trials involving these established treatments in combination with other things.

Just some thoughts....

Charles

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Charles.. I too am printing your response out for me. I did genetic testing last year at John Muir Hospital , Walnut Creek CA. A suggestion and thought from my GP . She has been my primary for 35 years. Knows I have a son and grand kids. Genetic banking was done and City of Hope has the blood also for research. i was tested for 6 different markers. Other than me telling my son (and then kids ) to request earlier testing nothing was a genetic pass to them, At least one good thing from my cancers!

I will read what you have given me and be asking a ton of questions. I'm very appreciative. Best to you ... Michael

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Hi Michael,

Glad to help. I live up in the Sacramento County area. You may or may not be interested in this kind of information:

A few years ago I started consulting with these folks at UCSF in the Mission Bay area.

ucsfhealth.org/clinics/geni...

I got a referral from them to some inherited genetics testing/counseling at the BRCA research shop over at the Mt. Zion location. Some family history forms to complete, and a "spit" test that was sent to SoCal to test somewhere around 54 genes, with a turnaround of 2-4 weeks.

brca.ucsf.edu/about/contact

I later got a Ga-68 PSMA PET scan as part of a Clinical Trial referral at the China Basic facility near the SF Ballpark, from these folks.

radiology.ucsf.edu/research...

You might find good face-to-face connections in some of the Support Groups in your area.

ustoo.org/Support-Group-Nea...

I'm planning to attend the next meeting of the smaller Yolo County Prostate Cancer Support Group on June 11th in Davis, CA at 7:00 PM.

yoloprostate.net/

I'm also planning to go to the Dos Coyotes restaurant on West Covell in Davis, CA at 5:00 for dinner/conversation before the meeting.

(Depending on the weather, if Gregg57 is back from a camping/astronomical "star party" he might be there, too.)

The more the merrier!

Charles

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