Our Walk With Stage IV Prostate Cancer: Doctor visit and test results

Thursday, October 11, 2012

Doctor visit and test results

Last night we had a great dinner with Kevin and Angie at Ruby Tuesdays. Good food, good company. Got back to hotel around 9:00 and relaxed.

This morning we got to the Anschutz Cancer Center at 9:30 and went straight to the lab for the blood draw. Then we saw the doctor at 10:30.

The last few visits we've seen what it's like to be at a teaching hospital. Last time -- in September -- we spent lots of time with a resident (Dr. Huo) and much less time with Dr. Flaig. That was confusing because we didn't expect it so we didn't get the answers to questions we wanted (although we sent Dr. Flaig an email and he responded quickly).

So today we saw a Fellow (Dr. Sumey) and we were prepared to ask questions of both Dr. Sumey and Dr. Flaig and that part of the visit went smoothly this time. Dr. Sumey addressed our questions and concerns for quite a while and then Dr. Flaig came in to talk about test results. I will see if I can correctly relay what Dr. Flaig said.

He said the bone scan showed little or no change from the bone scan that was done back in April when Marshall was initially diagnosed. That disappointed Marshall, but Dr. Flaig said he was pleased. He said the CT scan showed slightly more activity in the hip area than previously. And he asked how Marshall was feeling, whether there was any pain, etc. Marshall told him that he hasn't had any pain to speak of and had a bit more energy than back in August and September, and he still had hot flashes.

So Dr. Flaig said that, first of all, in his opinion, the bone scan "trumps" the CT scan and since the bone scan showed no real change, he considered that a good thing. And then when you take the bone scan along with the fact that Marshall has been feeling pretty good, he thought that indicated things were going along pretty good. However, he thought Marshall should also get an x-ray today just to have one more comparison done at the same time as the other tests. (We stopped at Radiology on our way out and Marshall had that x-ray done and we'll get that result tomorrow).

Then he told us that the PSA went up to 10.01. That was disappointing, but Dr. Flaig said not to be disheartened. He has added a new drug to the mix -- Casodex. Casodex is a testosterone blocker. Marshall will be taking a Casodex pill every day for the near future. It is supposed to create a block that will stop testosterone from feeding the cancer. So we will now be watching the testosterone level as well as the PSA level. He said that after a certain period of time on Casodex, if it drives the PSA level down the way he expects, he will stop the Casodex and see how things go. He told us about several patients who took the Casodex along with the Lupron and then stopped the Casodex when the PSA level got down to undetectable and those patients then went on to enjoy several years of "remission." So that is our plan going forward.

Next, we talked about Marshall's dangerously low Vitamin D level. Marshall had been taking Citracal and Dr. Flaig said Marshall should continue on that. But he added another drug that will give a megadose of Vitamin D (50,000 Intl Units in one pill). Marshall will take one of those every week for 12 weeks and we will measure the Vitamin D levels again.

So we left there feeling pretty good. And Marshall's frame of mind stayed good. He had one or two instances of the "demons" showing up. But Marshall has a technique of forcing the demon in a box and when the demon closes the lid, Marshall moves on feeling better.

On the way home, we stopped at Harley to see if his motorcycle was ready (he had taken it in last week for its 5,000-mile tuneup and to try to get the satellite radio fixed). The bike was ready so he got to ride it home and that was a good end to the day. The satellite radio problem turned out to not be fixed so that will be another battleBut we are now home and all in all, it was a good day. We go back on October 25 for his next Lupron shot and his next Xgeva shot.

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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.