Fangorn Forest

I am newly diagnosed with prostate cancer at age 62. It is metastatic. I am starting this thread to share my experiences as I begin a journey that has only one endpoint, but I have no notion of how long it can last at this time.

I do hope that my story, as it develops, can help others find a space to relax and breathe, to learn more about this peculiar condition that is so very similar and so very different in each of us, to not feel isolated and alone in facing PCa, and maybe to help a fellow traveler as I have been helped from following this forum for two long weeks.

It is also a very good place for my distant family to check in and know what I am about on this journey, and maybe, like me, they too will gain some comfort from the support and warmth and knowledge that flows through this community everyday. I feel like I am in the chute at a rodeo, sitting astride a massive and angry bull and having never been to a rodeo in my life, the chute is about to open- posters on this forum have, at the least, convinced me that I can hang on for a while, and they have told me how to do it.

So... a word about the thread title. Fangorn Forest is place from JRR Tolkien's trilogy "The Lord of the Rings"- a favorite of mine. It is a very dangerous place, but there is good in it as well- the Ents live there, and although they may be slow to act, if they act at all, they are strong and clear in their purpose. While they cannot rid the world of dark forces, they can create a safe but temporary haven for those in need. For me it serves as a metaphor (better than the rodeo) for this journey.

On to my story.

TO PSA OR NOT PSA?
Yeah the USPSTF recommendation not to use serum PSA level to screen for prostate cancer makes sense; screening does not decrease the number of deaths from prostate cancer, and it does result in overtreatment that can have devastating consequences- that was recommendation was posted in May 2012- how ironic for me. Where I worked at the time, they offered free lab draws as part of a wellness program, and I could always include a PSA for $20-40. I did so each year, always seemed to bounce around in the 2s. August, 2012 I go see my GP for something, she includes the PSA since I had been following it at work regularly (and 2.x is kinda high for many, although in normal range...), and it comes up 6.24. She suggests I consult a URO. DRE normal, no symptoms, biopsy with 12 cores negative, some guys run "hot" on PSA, URO says lets check again in 6 months. May, 2013 and PSA = 6.16, no change, normal DRE, let's check again in 6 months. March, 2014 ( I seem to be about 2 months late for each URO appt) and my PSA is 14.6; time for another biopsy, 19 cores and still negative. BPH clearly, but no urinary symptoms of note. URO places me on Proscar to shrink prostate- if PSA goes down with shrinkage, that is good, if it goes higher that is red flag; also shrinking prostate could make it easier to find those cancer loci that biopsies are missing...

October, 2014: PSA = 10.5- good direction
June 2015: PSA = 6.51- yay!!
March 2016: PSA = 19.0!! ***....

NEW TOOLS
Back in 2014, on my second biopsy, it was not common to use MRI to guide repeat biopsies to find cancer in prostates- now it is 2016, and is almost standard of care- clearly it is essential

MRI shows three regions of PIRADS 5 (high probability of cancer) and one regions of PIRADS 4 (signficant probability of cancer), median lobe pressing into bladder, probable extraprostatic extension at apex, suspicious looking iliac nodes bilateral.

Given the MRI report, doc could have hit these regions blindfolded (quite extensive throughout prostate); April, 2016: 31 cores and one week later, call to come see URO (on phone to MA "can you tell me the Gleason?", "yah, 10"- I knew to bring my wife to next appointment)
Biopsy showed many zones with Gleason 10, one with Gleason 8. URO sez "hardly ever see Gleason 10- this is unusual" - small solace in being anomalous.

NEXT STAGING
OK- lets do CT of abd and pelvis with contrast and bone scan in April: no bone mets (yay!) no visceral mets (yay!) "extensive pelvic and retroperitoneal lymphadenopathy" (ouch!)- time to find a medical oncologist

MEDONC
May 2, 2106: Looks like we will do current standard of care for cases like mine: HT and chemo with taxotere up front; I ask medonc what does Gleason 10 mean with regard to transition to castrate-resistant condtion in HT, he sez it often occurs in 6-12 months in such cases; I start casodex to minimize flare when I go on Lupron 1 week later

HW FORUM
I discover this place. I post (my first thread "new to everything"). Tall Allen suggests I look up a clinical trial for castrate sensitive cases where HT and chemo are combined with PROSTVAC. My medonc thinks that is great idea. I get info from NIH on Friday, collect my files and send them in, very organized, next Tuesday. Wednesday they call me back. May 24 I am scheduled for a screening exam at NIH.

LUPRON
Started on May 9; chemo on hold as it will be administered in trial, should I be eligible. So far no major side effects; I have felt better and seriously decreased ibuprofen intake for lower back pain since starting casodex

THE NIH TRIAL
NCT02649855 Docetaxel and Prostvac for Metastatic Castration Sensitive Prostate Cancer

This is a Phase II trial. Pt must be on HT and showing reduction in PSA as result. Two arms: Arm A is 6 rounds of docetaxel chemo followed by PROSTVAC primary and boosters over another 18 weeks; ARM B is PROSTVAC primary followed by boosters q 3 weeks with docetaxel given next day after booster for 6 rounds.

no placebo arm; the goal, as I understand it, is to explore whether giving immune stimulation (PROSTVAC) while killing PCa cells at same time exposes immune system to more PCa antigens, arming more T-cells to attack PCa tumors- it is a trial of sequencing treatment to best effect.

Now I wait for SE from HT and place my hope on qualifying for
for this trial. We shall see. Days seem a lot longer now- I try to be more active in entropy control in trying not to think, but thinking always happens and make the moments go slower- which must mean, relativistically, that I am in a singular frame of reference with velocity greater than that in the rest of the world- I think that's right, but sometimes these days I am a little foggy in the brain, and it seems harder to focus these old eyes..

enough for now

rf

rockyfords, Thank you for the very well-composed post. Your story is both upsetting and inspirational, in that you have been dealt a bad hand, but are dealing with it with both mental grace and the best possible medical intervention.

Good luck to you, and keep us posted on your experience in that clinical trial.

Hello rockyfords,

Welcome to the forum! So sorry you find yourself here but glad you found us.

I've added you to the roster for the Gleason 9 Crew (https://www.healingwell.com/community/default.aspx?f=35&m=3182035). We include Gleason 10 guys as well since your risk is clinically similar to ours. The roster is the fourth comment on the first page of the thread.

Hello Rockyfords,

Our paths have already crossed here, and pleased to see you actively posting --- we welcome you to the "fraternity of brothers" here --- we need you --- and we value your insight --- and your willingness to post your experiences.

That being said, your journey into Fangorn Forest is just beginning --- there will rushing streams to ford & wildlife lurking in the undergrowth, to be sure --- but in your SURVIVAL PACK, you've found the trail map and the golden compass --- and these will guide you through the wilderness ahead. Don't look back ... keep your feet on the forest path ... the tall trees around you can create shadows ... but there's dappled patches of sunshine everywhere in the forest ... so, always keep facing FORWARD. You're now the trailblazer through Fangorn Forest, Rockyfords ...

Meanwhile, I will look forward to your posts as a fellow "Battle Brother" and I also value the bond we share as educators --- thank you for your thoughtful and insightful posts !

Handshake of friendship,
Iowa State University ~ CYCLONE FAN

thank you all-

it all helps for sure--

regarding the elephant allen talks of, my goto meditation is music (gitar-singer-songwriter dude, developed in late age, like 56 yo) and it always transports me to a better place- i will do it till i cannot-

erbob--

not rocky ford, but on the front range and always eating those best cantaloupes when they arrive

rf

Thanks for giving us the details, RF, sorry you have had to join our club, I pray that you have spectacular success!

rf, thanks for the great report....Congrats on being a part of this major trial. I salute you. You are truly showing the way for those who come after.

Keep us posted on your progress.

Audentes fortuna iuvat

Hero

CHAPTER 3: A GOOD START

Getting up at 1:45 AM to drive 1.5 hrs to catch a 5:32 AM nonstop to BWI is one way to start a journey. However, I think the most trying element on this trip was waiting to clear the payment line during noon hour rush at the NIH cafeteria. Small stuff. about 12 hours after flight takeoff, I was in the NIH day hospital getting my 1st PROSTVAC injection.

WHAT'S IT ALL about?
PROSTVAC therapy is really cool. It is based upon viruses from the orthopox virus family, which includes smallpox. For years we used vaccinia virus as a vaccine for smallpox. No one knows specifically where vaccinia virus came from, but it is so closely related to smallpox that our immune response to a localized vaccinia infection
(the vaccination) confers protection against smallpox.

One important aspect of this virus family is that all of their reproduction takes place in the cell cytoplasm- viral DNA therefore never enters the cell nucleus and never jumps into host cell genomes. Any genes on the viral DNA end up making proteins in the infected cell cytoplasm- and those proteins will behave according to normal cell rules. Vaccinia virus, the primary vaccine agent in this therapy, can easily accommodate a large amount of extra DNA in its genome, and through the magic of genetic engineering, viruses can be designed as immunotherapy agents to attack cancer cells. Vaccinia virus vectors present multiple opportunities for stimulating the immune system in different ways, and PROSTVAC is but one approach and is specific to PCa.

A lot of vaccination is based on getting your body to make antibodies against a possible pathogen BEFORE you get infected. The DPT immunization is an example of that, where non functional toxins from diphtheria and tetanus microbes, and whole killed pertussis microbes, are injected. The body makes antibodies that bind to toxins or bacteria and prevent their entry into cells or their colonization of cell surfaces.

Another leg of our immune response is the generation of cytotoxic (cell-killing) T-cells that can identify one of our cells already infected with a virus, bind to that cell, and trigger it to undergo apoptosis (programmed cell-death, a switch present in all of our cells). This is a good way to clear infections by agents like viruses and some bacteria (such as tuberculosis and plague bugs) that reproduce inside our cells where antibodies cannot enter. Cytotoxic T-cells can also be stimulated by vaccination, and that is the goal of PROSTVAC- stimulating the growth and development of a T-cell population that will bind to PCa cells and tell them to die.

How does PROSTVAC do this? First there are two stages of inoculation, primary and booster. The primary inoculation uses a vaccinia virus that can infect our cells but will not grow well in our body (it is a live virus), and that virus has been genetically modified by introduction of genes for four new proteins. Three of the genes make proteins that, as a group, are called TRICOM.
These three proteins (called LFA-3, ICAM-1, and B7.1) will be made by virus-infected cells and will be presented on the cell surface, most especially on a cell in our tissues called a dendritic cell (more later). The fourth gene in the PROSTVAC primary makes the PSA protein, which is chopped into fragments in the cell, which are then placed into a binding site on another protein called MHC-1, and then presented on the surface of the infected cell. This is called antigen-presentation and it represents the first step to triggering the few T-cells in our body that can bind specifically to PSA fragments. These few T-cells are activated to multiply and go find other cells that make PSA and kill them. Dendritic cells are the professional antigen-presentation cells in our body that drive this process. T-cell activation requires a second binding interaction past the PSA fragment binding, and that is where the TRICOM proteins come in- they are the second signal molecules required. While the cytotoxic T-cells do there thing, a subset of T-cells will be stimulated to become memory cells, which hang out in the blood waiting for the appearance of more PSA- when that happens they rapidly divide and become active in killing their target cells (hopefully those PSA-expressing cancer cells).

So I got the PROSTVAC primary yesterday. Being a live virus, I have an active viral infection going on in my thigh, which I must keep dressed and dry and away from kids < 3yo, pregnant women, and the immunecompromised for at least two weeks. In two weeks, I go back to NIH for a PROSTVAC booster and my first docetaxel infusion. The booster is made in a fowlpox virus (same virus family but CANNOT reproduce in mammals) and again carries genes for TRICOM and PSA. I assume that presentation of this virus will stimulate memory T-cells from last inoculation to multiply and activate. I must wait at least 20 hours after booster before getting docetaxel- again, I assume that allows those T-cells to grow out before we bring in the artillery.

There is evidence in earlier PROSTVAC trials of T-cell populations that can recognize other cancer cell proteins after vaccination. The idea is that dying cancer cells release proteins that can be recognized by naive T-cells and undergo the activation that makes them bind to new cancer cell proteins and kill more cancer. This is called antigen spreading. This clinical trial is looking for a couple of things. First, does early PROSTVAC + standard of care for mCSPC improve outcomes. Second, does PROSTVAC stimulation during chemotherapy result in more effective antigen spreading and more active anti-cancer T-cell populations as the chemo kills cancer cells right and left.

WHAT'S UP
I have had two great days! Little to no pain. Lot's of adventure. A beautiful 2 mile walk from the Shady Grove Metro to my hotel on a cool east coast evening, through a park, under a blue-orange-yellow-gray sky. A sense of purpose and engagement. Enjoying the now like never before. Learning to use my first ever smart phone e to guide me through a suburban wilderness. I am still high on the residue of that trip. I am sensing all those cells and viruses at work in my body, all to my benefit. I feel great.

LESSON LEARNED
If you are going to NIH for clinical trials, it is near impossible to book hotels close to NIH within a two week window in the summer time (hence I luckily made my excursion to the end of the Red Line- Shady Grove, which by the way is title of a traditional bluegrass tune, first one I ever learned, now a staple in my repertoire). I have booked way out now through all of my trips.

Here's to fightin!

rf

Rockyfords...I don't know how I've missed your story until now! Wow, I've just been catching up for the past 15-20 minutes. Thank you for sharing your story and the level of detail you're providing, which I know could be very helpful for others here. And I also hope that there's a personal benefit to you for this process.

I wish you the best of luck on this journey and thank for including us. I hope we can be of help to you as well.

RF,
I have been following your journey thus far, and I am sure that many are gaining knowledge (and appreciation) for what you are going through. Some of the immunotherapy medical stuff was a little beyond me, as well as Hero and Bolo posting in tongues.
Thank you for sharing! It is good to see that you continue to "live large" as Todd would say, when you are able.
My DH also participated in an immunotherapy clinical trial in Portland. We both believe that immunotherapy will be the answer to beating cancer one day.
BTW, what kind of music?...maybe you said and I missed it.
I'm a Colorado native too. Grew up in Canon, college in Pueblo, and met my DH in Westcliffe. Still love to spend time in the Sangres when I can get away from the Pacific.
Beth

CHAPTER FOUR: WHERE I REMEMBER THAT I REALLY AM SICK

I am 8 weeks post definitive diagnosis and 4 days post my first taxotere infusion. So much has happened in that time, but I think the most pervasive element of this period has been how downright good I have felt. The HT induced reduction of pain and discomfort was so overwhelming, I actually lived much of my days believing I was not so sick. HT SE seemed minimal, PSA going down, a lot of travel, active engagement in establishing my treatment program, ramping up physical activity- all of this helped to me to craft a little scenario in the back of my mind where my Gleason 10 PCa was special, an outlier, one that would respond in a miraculous way to the interventions in my therapy. Feeling well always promotes optimism.

Feeling not so well is a gentle reminder that this will be a long journey with good days and bad.

IT JUST SLIPPED ONTO MY FINGER BY ITSELF, HONEST!
Both of Tolkien's hobbits, Bilbo and Frodo, found that the pesky ring could somehow slip onto a finger at an inopportune moment. Wearing the ring caused invisibility and a displacement from the "normal" world. All of a sudden the reality of a dark force at work in the world, unknown to others and focused on my destruction, was evident.

Without the ring, I am superman, normal like everyone else, maybe a bit more tuned into positive vibes that emanate from almost every human interaction- I am not ill and I do not present as ill to others.

When I had my first dose of unpleasant SE from chemo, I was on a plane back to Colorado, the ring had slipped onto my finger in a very public moment.

To recap, I am in an NIH clinical trial that adds PROSTVAC to standard of care (ADT + chemo) for patients with newly diagnosed mCSPC. I get my vaccinations and chemo treatments at NIH. My primary vax was given 2 weeks earlier, my 1st booster vax and first chemo round occurred last Tue/Wed. I spent the night in NIH hospital after chemo for timed blood draws, then headed home.

As we were riding the shuttle to the airport, my tongue started burning, feeling raw. Minor discomfort, soothed by a chocolate milk shake at the airport. Since we were flying Southwest, there was a very high probability I could not sit with my wife given or boarding sections. I decided "heck- I am not that sick, but I can't predict what is gonna happen over 4 hrs on the plane, I wanna sit with my wife- I am gonna ask for priority boarding". I felt like a piker, really, like someone using a relatives disabled tag to park close to the concert arena. I tried to look sicker than I felt, I guess I worried what those in the A boarding group thought about my character, even though they could know nothing of the demons I knew to be nearby. I got a window seat near the front, my wife next to me, a 4x4 space where I could wrestle with whatever showed up, insulated from the rest of the plane and with the best therapy for my discomfort sitting on my right.

about 1 hour into the flight, tongue still raw, I started having severe epigastric pain. It was clearly a product of stomach acid working on nerve endings in the esophageal junction with the stomach. It was incapacitating, it would crescendo for 2-3 minutes to an almost unbearable pain, the subside for 3-4 minutes, then come on again. This lasted for about 40 minutes, after which I was left with nausea, which I endured for at least 5 more hours till we got home. I can only say that my wife by me side made it better, and that taking ownership of my condition in a public setting, as exposing as that can be, was the correct path. Sometimes you just got to wear the ring. (I have listed my catalog of SE from chemo in the "Taxotere SE" thread).


WHAT'S UP!
Well, hot flashes for one, HT finally hit me like a semi with 15-20 hot flashes one day before we left for DC. Ugh. But that is small potatoes, right? They are less frequent now (8-10 per day?) most of the time. Are they worth it? Well, my last PSA, just before NIH therapies last week, was 0.92, down from 16.5, and I have been feeling great. So yeah, they are worth it. Right now I am slowly coming out of the fatigue/body pain post chemo, almost normal I think (ready to take the ring off again...).

The primary vax: no reation in my thigh at all.
The booster vax: OUCH!!! like a flu shot pain in the arm on steroids!, residing now thank goodness.

My wife and I went out to DC 3 nights before the NIH appt. We started with a Segway tour of the Mall and ended with a walk through the Supreme Court building on the way to the clinical center. We celebrated our 39th anniversary on Saturday night, and I could not be more privileged or blessed than to be her husband. We had many opportunities for discussion on this trip. It was great.

LESSON LEARNED
I find that I can distance myself from this disease state most effectively when I am dissecting it at a clinical level. I tend to blather on about statistics, trying to find evidence of how my singular instance measures against the varied landscape of PCa therapies and outcomes. During these monologues, I notice a sad and distant look in my wife's countenance. What works for me tends to make her more sad I fear. On the other hand, on parting for the night when I stayed in the NIH hospital, my fears and demons came to the surface, replacing her concern and subtle sadness with resolve to make me feel better. A complicated Yin-Yang for sure, but the lesson: you have to give those who love you and care about you opportunity to exercise their feelings. This may require that you put on the ring of your own accord and own your condition and fears for a few moments of exposure.


ON DECK
I go to Texas by myself to visit family first week of July. Next week, back to NIH for 2nd round of booster + chemo. I will be flying back right after chemo this time, so feeling crappy should not occur till I get home.

Here's to fightin'

rf

Thanks for all your posts Rocky. I wish you all the best going forward....Jim