HealingWell
Search Close Search
☰

Oh FUDGE (except i didn't say "fudge")

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/30/2013 4:52 PM (GMT 0)
 Its a sad day for me. The plan had been to take an HT holiday. been on the stuff for 1 year now and i hate it. Only needed to confirm that my METS, previously visible only with a PET scan, did not grow so as to be visible with a nuclear bone scan. My PSA has been effectively zero for 6 months now, so I had NO expectation of a problem

Stupid me, 2 Tumors visible with the bone scan. Not only will there be no HT break for me, but i now face a very uncertain future. I see petrylak tomorrow.  Took a long 2 hour walk in central park, its a lovely spring day here in NY.

Post Edited (Keeping faith) : 4/30/2013 10:55:20 AM (GMT-6)

Posted 4/30/2013 5:08 PM (GMT 0)
Keeping faith. Time to get provenge. The sooner the better. Insist on it. Todd
Posted 4/30/2013 5:26 PM (GMT 0)
Sorry for the news. Have you looked into Provenge? It appears that you might be a candidate with evident mets that are non or minimally symptomatic. Technically you should be hormone refractory. Some people are having good results like Todd1963. Many doctors are reporting that they believe other treatments are workinh better after the Provenge has taken effect.
Posted 4/30/2013 6:02 PM (GMT 0)
They can do a lot of good things with bone mets these days. So, it's good to talk a nice long walk as you think about the future -- a very hopeful future.

We'll sure be hoping & praying for you to receive great benefits from future treatments so you can finally put all of this behind you.

Hang in there!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 4/30/2013 6:56 PM (GMT 0)
Yes, you're allowed to use that word in this situation.

Sorry to hear you have to deal with this at this level.

Do check out the provenge - it a good option.

All the best,
Andrew
Posted 4/30/2013 8:36 PM (GMT 0)
Before jumping on any bandwagon, what HT are you on?

Is your PSA rising or are the images the only evidence?

Is it possible to just zap the Mets?

What about that "liquid radium" stuff (AON 239 or something like that). It is supposed to help with bone Mets. Maybe abiritone. (I can't remember the spelling of all these drugs).

I'm not sure you should move to the next step just yet.

This is where having a god PC expert medico comes in

Mel

Posted 5/1/2013 12:34 AM (GMT 0)
Keeping faith,
You have excellent doctor ( Dr. Petrylak ). I remember when panel of doctors discuses case of patient who has advanced prostate cancer ( he was on Xtandi and his PSA started rise) and moderator asked what experts will do next and only Dr. Petrylak said Provenge. He was only right. That patient took Provenge and still continue Xtandi . Several months after Provenge therapy was completed, his PSA began to drop and dropped back to undetectable levels, where he is now, which is about 8 months or 9 months later.
I posted that case on Provenge thread on February 10, 2013

www.healingwell.com/community/default.aspx?f=35&m=2487796&p=4


You are in good hands. Dr. Petrylak is one of the best.


My best to you.
Posted 5/1/2013 12:58 AM (GMT 0)
Fudge ... (I agree, but used a different word too.) ...

For what it's worth, my short list of options should i get similar news is:
* Provenge
* Kwon at Mayo and Pet ChII scans / specific treatments based on what he finds
* new drugs in the pipeline XL184 and Ipilimumab

Having a great doctor (or more than one even!) is very important. Sounds like you've got one and the beginnings of a plan. Prayers and hugs.

Ray
Posted 5/1/2013 1:46 AM (GMT 0)
good luck with this. Hope never die's endorsement is a plus since he is your one already. I know zip about provenge, but icompiler's advice is not that far off base, to me. though todd1963 is a power hitter for provenge. Just not sure when it would be time for the nuclear option so to speak, might be used in a if all else fails. But honestly, I really don't know. your tag will stand you well with any decision you make IMO
Posted 5/1/2013 1:51 AM (GMT 0)
sorry to hear of this, good luck, no easy answer for what ails you at this point, hope you have a lot of faith in your doctor's sense of direction at this juncture.

david
Posted 5/1/2013 2:18 PM (GMT 0)
Fudge is close to the right word. Sorry about your news

We have a meeting with our ufo coming up for our next steps. I am thinking we should ask about Provenge too. I will be interested in your updates
✚ New Topic ✚ Reply