Hopeful News from NIH....

My beginnings were not too common if not frightening—Diagnosed in May 2011 with a Gleason 7, we chose DaVinci surgery for our treatment. All seemed hopeful until the pathology which indicated SV invasion and lymphnode involvement. The worse news came with the three month post surgery PSA test of over 6.0. The local RO said radiation but the prostate MOs at U of Chicago and Dr. Lam in California said radiation would have very little chance of a cure and just more side effects.

The nasty year on Lupron did knock the PSA down to undetectable so we took a break from it while looking for better imaging. Did a C11 acetate scan at U of Kansas which showed nothing with PSA nearing 2. Prepared to get back on the Lupron my PCa manager (mswampuscat) with encouragement from other Healing Well folks, found a trial at NIH, National Health Institutes in Bethesda. I was fortunate to get into the 3 months of Enzalutamide PLUS Prostvac immunotherapy arm of the trial and the PSA plummeted fast (ENZA!) without the Lupron side effects.

The PSA began its rise after the 90 day supply of Enza was done but I got another year off the Lupron. Again, we got ready for the next Lupron shot with PSA over 7 and NIH said “lets do the Enza again”. Two more months on Enza monotherapy and the PSA is DOWN TO 0.08

Now the better news ...I’ve just returned from my 2 month appoint at NIH which was for 3 day and included an additional study trial “Evaluation of Feromoxytol Enhanced MRI for the detection of Lymph Node Metastases in Cancers”. Sonny3 is signed up for this trial too. (NCI Study Number 14-C-0107) My results showed only one lymph node on the right external iliac that was positive. Nothing definite here; we know the PCa can be hiding somewhere else, but it gives us more hope in several ways—targeted radiation to the affected node/s or removal. We have decisions to make soon but there’s hope.

Just want to end by saying, look into what NIH may have to offer for you. It’s our nations center for medical research and they accomplish so much. Did I mention they fly me there and provide a stipend for lodging and food? It’s a wonderful place filled with hope and hopeful and caring people.

Jim (and Marie)

Great report!

Glad you got into those trials.

Andrew

That is a great report. Happy to hear from you.

Well both of us had some GREAT news today. Bonus Days are spreading across the country.

Getting news like this is sure to mean come great celebrating over the weekend.

Yes, I am registered into the same "Feromoxytol" trial as Jim and as a matter of fact the NIH called me yesterday about scheduling me to come up there. I told them it would have to be after April, as I have the entire month planned to be in Louisiana.

See you guys in Baton Rouge. We'll drink a bottle of wine or two to celebrate,

Sonny

Thanks Everyone!
@Allen- Actually the PSA would've been .08 and that's some pretty good imaging! They previously saw 2 enlarged lymph nodes (traditional CT) when the PSA was closer to 7. I've been looking at a few new studies discussing the benefits of RT for positive lymph nodes after surgery. Maybe from the SUO '15 conference. HEAVY reading for me :(

Marie and Jim

@wampuscats - amazing at that PSA! I'm glad you're studying up - the issues are varied and complex. Because Jim is radiation-naive, this opens up the benefits and risks of whole-pelvic treatment. I've been eyeing the new Vero system at UF Jacksonville for applications like this that require lightning fast speed and pinpoint accuracy to avoid toxicity.

- Allen

Awesome news!!! So glad to hear this.

Can't wait to see y'all next month in BR

Best -- Jon

Sonny, Marie and Jim,
Thank you for the replies. So glad you've had such good news. The possibility of finding the metastasis through these scans has given made us more optimistic. The nurse we spoke to thinks DH would qualify for Arm 2 of the trial. Do they put you in touch with other studies that you might be a candidate for?

Jim so happy with your report. Awesome!

Jim and Marie,

I'm so happy for you to hear the treatment is working so well. I'm also grateful and encouraged to see someone like you who is at the pointy end of the spear for new treatments. It gives encouragement to those of us who may be coming along behind you.

Jim

wampuscats- good for you! This is a very interesting post. I will look at NIH to see if they have anything to offer. Prostvac sounds promising from what I have read.