VA Cancer Care: My ten years of... - Advanced Prostate...

Advanced Prostate Cancer

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VA Cancer Care

pinejogave profile image
15 Replies

My ten years of fighting prostate cancer includes

Prostatectomy,radiation, casodex ,Xtandi ,Lupron,

Xgeva ,Lu 177 ,Zytiga, as well as unresponsive Chemo,s docetaxel and Jevtana .

I have been on Zytiga and Prednisone for eight months .

My PSA moved from 320 to 516 in thirty days.

My MO is attempting to access Radium 233 from the VA.

Has anyone had a similar path?

Has anyone received Radium 223 from the VA?

I’m told it runs $80k for 5 or 6 infusions.

Thanks

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pinejogave profile image
pinejogave
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15 Replies
Tall_Allen profile image
Tall_Allen

Have you had any metastases biopsied? I notice you don't list a PARP inhibitor, which may be useful if your tumors have a BRCA mutation. You also list no immunotherapies- Xofigo seems to combine well with Provenge:ascopubs.org/doi/abs/10.120...

I'm wondering why you weren't prescribed Lupron? I get an injection every 3 months, take Zytega 1000 mg a day, and also take an herbal supplement called "Birm" which has been shown to help kill prostate cancer. Before sleeping I picture in my mind Killer T cells attacking and destroying cancer cells. It's kind of a video that I play in my mind with the killer cells (looking like sharks) racing up and down my bloodstream, destroying cancer cells in their path. I don't do chemo or radiation, and I won't. I also eat a lot of vegetables like brocalli and califlower.

j-o-h-n profile image
j-o-h-n in reply to Desertcactushighways

Funny you should mention you are playing a video game when going to bed about sharks racing up and down your bloodstream destroying cancer cells....

I have almost the exact imaginary video game but my sharks are racing up and down a "desertcactushighway"..... Wow now that is some coincidence......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/13/2020 6:52 PM EST

MateoBeach profile image
MateoBeach in reply to j-o-h-n

“Sweet smell of colitas rising up in the dust...

j-o-h-n profile image
j-o-h-n in reply to MateoBeach

youtube.com/watch?v=FVsbvFk...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/14/2020 11:06 AM EST

MateoBeach profile image
MateoBeach in reply to j-o-h-n

In the air! Thank you that has got to be the greatest version ever. Highlights that amazing 12 over 6 string dual neck builds specifically to play that song.I remember some years back dancing with my wife in the very cool Hotel California in Todos Santos Baja to a very good version by a band on a warm Summer night wonderful memory

j-o-h-n profile image
j-o-h-n in reply to MateoBeach

youtube.com/watch?app=deskt...

For you and the boss.... enjoy,,,,,

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/14/2020 3:00 PM EST

MateoBeach profile image
MateoBeach in reply to j-o-h-n

Back at you with this bit o beauty. Kennedy Center tribute to Zeppelins Stairway. m.youtube.com/watch?v=2cZ_E...

j-o-h-n profile image
j-o-h-n in reply to MateoBeach

Thank you.... very enjoyable.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/14/2020 7:48 PM EST

Desertcactushighways profile image
Desertcactushighways in reply to j-o-h-n

There was a book published in the 50's by a Dr Cobb, entitled, "laughter is the best medicine. Also, if you have medical marijuana available to you I would recommend it. 😜😁

j-o-h-n profile image
j-o-h-n in reply to Desertcactushighways

Thanks........ I already ate that book....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/14/2020 11:10 AM EST

RVALuna profile image
RVALuna

MY Brothers Don and David, with Germline Mutation =TMPRSS2-ERG Fusion like me. I have been trying to block my Alpha estrogen receptor as with my use of Casodex I produce high testosterone which Aromatases in my blood from diet etc. can turn the testosterone into estrogen which if it bonds to my Alpha estrogen receptor can grow the cancer. So I take Aromatase inhibitors to block estrogen formation. My list of twelve Aromatases is listed below the abstract that follows.

Xu Z, Wang Y, Xiao ZG, et al.

Nuclear receptor ERRα and transcription factor ERG form a reciprocal loop in the regulation of TMPRSS2:ERG fusion gene in prostate cancer.

Oncogene. 2018; 37(48):6259-6274 [PubMed] Article available free on PMC after 31/12/2019 Related Publications

The TMPRSS2:ERG (T:E) fusion gene is generally believed to be mainly regulated by the activated androgen receptor (AR) signaling in androgen-dependent prostate cancer. However, its persistent expression in castration-resistant and neuroendocrine prostate cancers implies that other transcription factors might also regulate its expression. Here, we showed that up-regulation of nuclear receptor estrogen-related receptor alpha (ERRα) was closely associated with the oncogenic transcription factor ERG expression in prostate cancer, and their increased coexpression patterns were closely associated with high Gleason scores and metastasis in patients. Both ERRα and ERG exhibited a positive expression correlation in a castration-resistant prostate cancer (CRPC) xenograft model VCaP-CRPC. We showed that ERRα could directly transactivate T:E fusion gene in both AR-positive and -negative prostate cancer cells via both ERR-binding element- and AR-binding element-dependent manners. Ectopic T:E expression under ERRα regulation could promote both in vitro invasion and in vivo metastasis capacities of AR-negative prostatic cells. Intriguingly, ERG expressed by the T:E fusion could also transactivate the ERRα (ESRRA) gene. Hereby, ERRα and ERG can synergistically regulate each other and form a reciprocal regulatory loop to promote the advanced growth of prostate cancer. Inhibition of ERRα activity by ERRα inverse agonist could suppress T:E expression in prostate cancer cells, implicating that targeting ERRα could be a potential therapeutic strategy for treating the aggressive T:E-positive prostate cancer.

Check this website==> canceractive.com/article/na...

Follow are some of the Aromatase inhibitors I know I am taking. I expect that some of the other supplements are also inhibitor too

1. Femara - prescription to reduce breast growth and hot flashes - 1 pill/day

2. Foti ( also called emodin) 3/day

3. Chrysin 3/d

4 Grape seed Extract 3/d

5 DIM 3/d

6. Apigenin 3/d

7 Indole 3- Carbinol =I3C 3/d

8. Quercetin 3/d

9. Luteolin 3/d

10. Myricetin 3/d

11. Green tea 9/d

12. Curcumin 12/d

My history follows Gleason 8, against the capsule more 50% cancer, PSA 4.8. Surgery 1994, BCR 2000 Jan; PSA 0.3 than started Proscar, PSA went to less than 0.1 for one year and added Avodart to Proscar 2006 ; PSA slowly climbed to 1.0 by 2012 ( This is following 1995-96 paper by Dr. Gerald Androile U. of St Louis Urologist) at the rate of 0.1 per year than started faster so by Dec2014 it was 2.2 and by Dec. 2017 it was 12.2. Axumin test then showed multiple lymph node mets and hip bone met (MRI had showed nothing 2015 and 2017)

Extend ( large field MRI showed the bone met Dec2017). Started Casodex with my Avodart/Proscar plus many antioxidants and anti-inflammatories used for 15 + years.

PSA drop 90 percent the first month. Lowest after 2 1/2 years was 99% , It has increased slightly in the last six months so as of Oct it is 0.0158 with doubling time of 5 months. I have added more non standard of care supplements and will get another PSA this week.

Prostate support group volunteer Best Pedro

MateoBeach profile image
MateoBeach in reply to RVALuna

Really good analysis of Some very complex Cancer cell biology and reasonable therapeutic response to it. Much to admire in your thinking and approach. Beat of luck dealing with the “TEmpress” and her ERG fusion as I call it. A formidable foe. Best of luck and fortitude.

Justfor_ profile image
Justfor_

Four decimal point PSA, very intriguing. I know it exists, but don't thing it got much traction with the years. How come and you have it?

RVALuna profile image
RVALuna

Mateo Beach, If you want more of my research, Google " Prostate Cancer Peter's Note"

Best Pedro

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