Post about Eric's Passing & Offer to Help

[celler6]

I read the post about Eric's passing and my heart sank. It gave me a view of my future if cancer has its way. His dream, to build a community that helps its fellow members, it is exactly what I have been looking for. I can't help financially, but I am willing to do my part for the cause. I'm not going down without a serious fight!

Since 2010, when I battled throat cancer, I have been a volunteer for Immerman's Angels. They are a cancer support organization that relies on pairing the newly diagnosed, through treatment, with someone who has gone through the same cancer. Wonderful organization. That training and my experience could be helpful to some in this group, including the women I see on here.

I am willing to be a sounding board to anyone. My days are pretty open and I enjoy helping others; it gives me peace. Please reach out if you want to chat. I am in California. Here are some details:

51 yo diagnosed in Nov 2014, age 48; PSA 7.5, 12/12 cores, Gleason 5+4. Invasion of seminal vesicles. Opted for radiation and HDR along with Lupron, casodex and bicalutimide. 6 mo after radiation, PSA started to rise, 5 mo doubling. Switched off Lupron to Firmagon + Xgeva; PSA fell to post-therapy 20. Now castrate resistant. Pet scan, MRI showed mets to femur (x-ray shows it was there when I was first diagnosed!), pelvis, ribs, shoulder, spine, tailbone, legs. Now mCRPCa or how Eric preferred, APC. 2 rounds of Docetaxel and Carboplatin; ended up in ICU, coma for 9 days shortly after (ARDS, sepsis, pneumonia). Stopped chemo. Levels all good. Cancer seems to be on hold. Xgeva failed (side effects), switched to Zytiga. Currently taking it, plus prednisone; Firmagon and Xgeva, 7/16. As of today cancer remains metabolically inactive.

Treatment at Stanford University, Dr. Srinivas. Also being seen at Mayo for C-11 scan every 6 mo. Next one in June 2017.

I am attending the upcoming PCRA conference in Marina del Rey, CA on March 25, 2017. Anyone else attending?

Hit me back if you want to chat. Really.

[paulofaus]

Thanks for the message celler6 . It sounds like you've had a few set backs lately, with treatment failures etc. Your ideas are really good, keep up the good work, Cheers Paul.

[rickcricow]

Where did you find a post about Eric's passing? Can you post a link? Thanks.

[Darryl Partner in reply to rickcricow]

Here's the post about Eric's death.

healthunlocked.com/advanced...

[Hidden]

I plan to go. Have the airline tickets

[celler6 in reply to Hidden]

Awesome. I'd love to meet since I know no one at the conference that I know of. I am reachable at Please private message me for phone number. Text me and we will find each other.

[Hidden]

Is that Mayo C-11 scan available only in MN or is it offered in Phoenix too?

[celler6 in reply to Hidden]

My understanding is that it is only available at the main clinic in MN. I think there was talk about it, so you might check.

[efsculpt]

What about the G68 PSMA pet/ct scan? It's a UCSF.

[celler6 in reply to efsculpt]

Not aware of that one. Tell me more!

[efsculpt in reply to celler6]

I am a patient at Stanford. However, though they have the G68 PSMA, it is considered experimental and I was told it is not available (It was used last year!). It is supposed to be a PET scan that can be used at very low PSA. I called UCSF to arrange a second opinion- (got to get going on this). This is what I can find regarding PET scan- I'm not sure it is the G68 but it does use Galenium. I spoke to an appointment person and she mentioned the G68 scan.

radiology.ucsf.edu/patient-...

Also, in our HealthUnlocked dialog- here is UCLA trial (it mentions UCSF)

radiology.ucsf.edu/patient-...

Let me know if you find out more.

Regards,

Craig

[ctarleton in reply to celler6]

I had a Ga-68 PSMA PET/MRI at the UCSF China Basin facility in August 2016, across the street from the SF Giants ballpark.

I was referred by Dr. Eric Small of the Genitourinary Oncology group at UCSF Mission Bay.

ucsfhealth.org/clinics/geni...

It was via his referral to a Clinical Trial seeking data for the possible FDA approval of that particular marker.

urology.ucsf.edu/news/all/2...

"In the last few years there has been significant improvement in the imaging of prostate cancer using Prostate Specific Membrane Antigen (PSMA) PET. We were the first institution in the United States to imaging patients using 68Ga-PSMA-11, otherwise known as the Heidelberg compound of HBED-CC PSMA. We are involved in a multicenter trial to obtain data that will eventually lead to the FDA approval of the compound. We are also progressing towards creating a trial using PSMA-617 as a targeted therapy treatment."

Clinical Trials

•Initial evaluation of PSMA PET in prostate cancer patients (NCT02611882)

•Gallium-68 PSMA-11 PET in Intermediate to High-risk Preprostatectomy Patients (NCT0291911)

•Gallium-68 PSMA-11 PET in Patients With Biochemical Recurrence (NCT02918357)

Hope Lab Contact

PI: Thomas Hope, MD

Assistant Professor in Residence

UCSF Department of Radiology & Biomedical Imaging

Email: [e-mail]

Charles

[Daddyishealing]

Thank you for your kindness, and we are all rallying with you as well. Xoxo happy healing

[DFZ4835]

Celler6.

You idea sounds great. I would like to participate in that effort. Contact Joel to see if it can be done on this forum. I know most of us need reassurance and hope after we hear the word cancer. I sure did.

Let me know what I can do to help. I am 73 and have a part time job to help pay for the runaway cost of cancer. I don't work because I want to. I need to.

DFZ4835

DENNIS

[Darryl Partner in reply to DFZ4835]

What is the celler6 idea 💡 that you are referring to?

[DFZ4835 in reply to Darryl]

Darryl

See the top of this post. Celler6 explains it in his opening remarks. It expresses what we're about in this forum. It is the thing Eric would have loved.

Dennis

[Darryl Partner in reply to DFZ4835]

If you're talking about live meet-ups, we have that built in right now. We call it people near me .. find it under the settings tab. Eric wanted to help us fund raise to improve the code so people could meet at conferences like pcri in addition to their local. Community 😊

[Darryl Partner in reply to Darryl]

Click here for our "people near me" healthunlocked.com/people-n...

[DFZ4835 in reply to Darryl]

Darryl,

I have the ( people near me ) feature. I live in the Chicago area and the only person close to me was Eric. Two others are listed within 100 miles. I don't believe we need to see someone face to face to comfort them or give them information. To be able to chat with them in a private area or talk to them on the phone could be very helpful. We just need to know if someone needs talk.

Dennis

[Darryl Partner in reply to DFZ4835]

Private messaging is available now! Just click on the persons name and you will see a "message" button...I'll send you a message now to show you. A "please call me" feature is something we are working on. As I wrote in the Eric PDF. Unfortunately simply posting your own phone number online or blindly sharing it is dangerous so we are developing code to do that safely .

[Darryl Partner]

There are two ways to send private messages to individual community members in our prostate cancer support communities. Here's an article that explains how to do both. We just updated it a couple of days ago so please let me know if it is helpful

support.healthunlocked.com/...