Our Walk With Stage IV Prostate Cancer: Veterans Fundraiser

Friday, October 11, 2013

Veterans Fundraiser

Marshall was invited (by Jana Bartlit) to display his motorcycle at a veterans fundraiser last night. So we got the bike prepared (polished it, drained the gas tank, disconnected the battery) to be displayed inside a building. And we drove up to Denver yesterday morning.

The event was at the Wings Over the Rockies Air & Space Museum. We got the bike there and got it all set up and then went back to the Bartlits' to get ready for the event. We had a great time, but it was also very emotional being reminded of the plight of many returning veterans. I believe the event raised a nice amount of money to help veterans. We took Marshall's power chair so he could mingle easier.

We spent the night at the Bartlits and this morning went back and picked up the bike and headed home. Got back around 4:00 this afternoon. I am happy to report that for this two days Marshall's pain level steadily decreased enough that he could get up out of a chair without help.

This photo is Marshall getting set up to display the bike and tell people the bike's story:

This is Marshall with Jana right before the event started:

This plane is displayed at the entrance to the Air & Space Museum and it is special because by the tail number, Marshall realized that this was an actual plane that he worked on during the Vietnam War.

Shortly after we got back, we got an email from the University that there were new tests results to view on our Health Connection website. I logged in and found that an additional test had been run on Marshall's blood draw from Monday, a test that they hadn't mentioned to us.

It was Chromogranin A-serum and Marshall's "value" was 1,665 and he should have been in the 0-95 range. Well, that sure didn't sound good. So I immediately consulted Dr. Google and learned that this test could relate to (1) cancer getting worse; or (2) being treated with a proton pump inhibitor such as Prilosec or Protonix.

Marshall had taken Prilosec for years and was recently changed to Protonix. Dr. Google said that if your Chromogranin A-serum is high your doctor will probably take you off of the proton pump inhibitor for a week or so and then repeat the test to see if the levels go back to normal. If they do, all is well.

I immediately left a message for the oncologist because I didn't like getting a message like this that isn't accompanied by some reasoning. We've got another week before we see the oncologist again and it will be a week of worrying myself to death. Hopefully he will call back on Monday.

And we have now made the appointment with the neurologist (Monday, 10/21) and we believe the MRI will be scheduled for this Monday or Tuesday.

We were scheduled to go to Chicago next weekend for my firm's 20th anniversary celebration but Marshall has decided not to go. So I will be leaving on Friday and returning on Sunday (so I can be with him for his appointment with the neurologist and then with the oncologist on Monday the 21st).

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Marshall's Story (condensed)

On 3/14/12 went to emergency room with severe chest pain (turned out to be bone pain)
3/17/12 diagnosed with Stage IV Prostate Cancer (metastasized to the bones), PSA was 49
3/29/12 Biopsy confirmed advanced cancer, with a Gleason Score of 8, PSA had risen to 95
3/29/12 Received a double injection of Firmagon hormone therapy (very painful!)
Early April 2012, within less than a week, bone pain subsided, and he was out of bed!!
4/30/12, PSA had gone down to 9! Hormone therapy changed from Firmagon to Lupron (a 3-month injection) Side effects: fatigue & hot flashes
6/11/12, PSA now down to 3.9! Considering a clinical trial.
6/19/12, decided against the clinical trial.
7/10/12, lab work done at request of VA regarding Agent Orange claim.
7/12/12, evaluation by a private doctor at request of VA.
7/26/12, visit to oncologist. PSA remains at 3.9!!! Very good news. Bone strengthener postponed for 6 weeks. Next appointment 9/13/12.
8/6/12, VA approved Agent Orange-prostate cancer benefits; Marshall is now considered 100% disabled. This decision will be reviewed again in six months.
9/4/12, passed out, chest pain, pale, sweating, clammy, rushed to hospital by Flight for Life. Doctors were unable to find a cause, but it wasn't cancer related. Left the hospital 9/6/12.
9/13/12, PSA went up to 6.6 ... depressing. CT scan, bone scan and another PSA test scheduled for 10/11/12.
10/11/12, Bone scan showed no change from prior bone scan; CT scan showed slight increase in "activity"; PSA up to 10.01. Casodex is started as well as megadoses of Vitamin D2.
10/18/12, Excruciating back pain, thought it was a Casodex side effect; oncologist says it is not SE. Went to clinic, got x-rays of spine, showed nothing, maybe hairline fracture, got injection of "aspirin" and started feeling better.

10/25/12, Lupron injection; Xgeva injection; flu shot. SE from Lupron was pain at injection site for several days.

11/21/12, PSA 10.22, Xgeva injection.

12/17/12, Kavanaugh (radiation oncologist)

12/20/12, 12/21/12, 12/22/12, first 3 radiation treatments

12/27/12, 12/28/12, last 2 radiation treatments

1/1/13, called 911, stomach pain, taking laxatives per instructions of Dr. Yeh, radiation oncologist. In hospital 3 days, diagnosed with radiation colitis. PSA 12.3. Colitis can't be treated, needs to resolve itself. Sent home 1/3. Advised that white blood cell count was low, get it retested.

1/7/13, went to clinic for lab work

1/8/13, appointment at clinic, white blood cell count heading back up but sugar very low and dehydrated. He was put on intravenous fluids for 40 minutes, felt better.

1/17/13, PSA 13.2, Vit D in normal range, Lupron shot, Xgeva shot, discontinue Casodex, white blood cell count almost back to normal after radiation.

1/28/13, went to emergency room with excruciating pain in right leg; no blood clot, no hairline fracture, no sciatica. Advised that fracture was imminent and to get wheelchair.

2/7/13, saw oncologist to get tests after emergency room visit. They do not agree that fracture is imminent and thought pain may be caused by withdrawal of Casodex. We go back on 3/1 for PSA test and discussion of clinical study of GTX (estrogen therapy) added to the treatment plan.

3/1/13, saw oncologist; PSA almost tripled to 31.06; started process to participate in clinical study for GTX-758.

3/4/13, not accepted in clinical study, bloodwork showed "low threshold" for clotting; will start Zytiga & prednisone on 3/12/13, started Zytiga with Prednisone;

3/17/13, FIRST PAIN FREE DAY IN MONTHS!

4/7/13, STILL PAIN FREE

4/8/13, visit to hospital for lab work; all good; PSA DOWN TO 10.23!!

4/22/13, visit to hospital for lab work; all good. Received Lupron shot. Xgeva will be stopped until calcium levels go up. STILL PAIN FREE.

5/8/13, lab work; all good. PSA down to 5.1. Got Xgeva shot.

6/12/13, lab work; PSA down to 1.45. Dehydrated, hemoglobin low. Need to come back in a week to re-check kidney function.

6/18/13, lab work, kidney function back to normal; need to start iron supplement for anemia caused by Zytiga.

7/9/13, PSA down to 1.04 !!!!!

7/31/13, PSA down to 0.88 (woo hoo!)

8/28/13, PSA 0.88, got Xgeva shot

10/7/13, PSA 1.28, Xgeva discontinued because of side effects

10/16/13, CT scan, bone scan, MRI

10/21/13, results of tests showed healing in the bones, no evidence of new metastatic disease

11/13/13, lab work normal, got referral to psychologist

12/11/13, PSA 2.16, doctor says not to worry

1/6/14, saw psychologist, went well

2/4/14, CT scan, bone scan

2/6/14, PSA 2.8, scans look good, CT showed healing, got Zolodex injection, still off of Xgeva

3/5/14, PSA 2.45, all lab work normal

4/7/14, PSA 4.64, lab work normal, doubling the antidepressant, saw psychologist

5/15/14, PSA 3.72, lab work normal

6/19/14, PSA 7.46, lab work normal, bone scan showed new activity in upper spine

7/17/14, PSA 9.4, repeat scans set for 8/12

8/14/14, PSA 11.23, cancer progressing slowly, may start chemo in a few months.

9/15/14, PSA 20.8, new scans set for 10/14, then we find out what happens next.

10/16/14, PSA 33, Zytiga discontinued; started on Cytoxan; radiation scheduled for early November.

11/18/14, PSA 35.6, Zoladex injection, could he be suffering from radiation "flare?" Radiation oncologist says no.

12/1/14, discontinued Cytoxan.

12/22/14, PSA 28.0, he is in nursing home for physical therapy.

1/15/15, PSA 33, scans scheduled for February

2/9/15, scans cancelled; emergency surgery to remove tumor wrapped around spine; PSA 40

3/9/15, PSA 43, spots found on liver

4/13/15, PSA 45.62, spots on liver are probably fatty tissue. We will watch closely. Continue on oral chemo Cytoxan.

5/13/15, PSA 64.9

6/4/15, PSA 65, got quarterly Zolodex injection

7/2/15, PSA 262, will get radiation and will try Zytiga again

7/9/15, Hospice.
7/22/15, R.I.P.