Our Walk With Stage IV Prostate Cancer: We are home, but.....

Sunday, November 2, 2014

We are home, but.....

We left the hospital around 1:30 and went to Walgreens to fill a bunch of prescriptions. The prescription for Dilaudid couldn't be filled because it is evidently such a heavy duty drug that we have to go through several layers of approval in order to get it. So I will take the necessary paperwork to Walgreens tomorrow to try to get that in the works.

Marshall was fine all the way home. We got home and he was getting all settled to watch a football game when all of a sudden he had trouble breathing. He has oxygen here (he uses oxygen at night) so we got the oxygen out and hooked him up.

I left the room for a few minutes and when I came back, he was face down on the floor. He says he fainted. I was going to call 911 and he wouldn't let me. He says he is not going back to the hospital and delay that radiation any longer.

Somehow he was able to get into bed with the oxygen and he fell asleep leaving me in a total panic.

Since his only oxygen problem here at the house was due to his sleep apnea and he uses a CPAP machine with oxygen at night because of that, and he's never had problems during the day before, I am inclined to think that this evening's episode was brought on by anxiety. I gave him an Ativan a little while ago to calm him. But he is still sleeping with the CPAP mask on.

So now tomorrow I need to get over to the oxygen place and see if we can get him set up for our trip to Denver on Tuesday and if it turns out we need to spend a week or so in Denver, we're going to need to be ready with oxygen. I told him tonight that it is time to start looking for nursing help. After he went to sleep I tried to get a plan together for taking the MANY MANY pills he has to take every day and I was completely and totally overwhelmed.

He needs morphine at 6AM, 2PM and 10PM. If he has any breakthrough pain between those times he gets to take a Dilaudid "as needed." He needs Zofran at 7:30A. He needs chemo at 8:00A. He needs prednisone at 9:00 and 5:00. He needs Prilosec in the morning and at bedtime. He needs Spiriva in the morning whenever he gets up. He needs sleeping pills at bedtime, as well as an antidepressant. He has allergy pills that need to be given twice a day and also "as needed" if there is any coughing.

Then there's the over-the-counter stuff: fish oil, vitamin B, vitamin D3.

Then there's the insulin injection before bed, one blood pressure pill in the morning and a different blood pressure pill at night. And then I need to be sure prescriptions get renewed before they run out (keeping in mind that with things like sleeping pills or antidepressants or tranquilizers you can't renew them too far in advance -- they have to be almost gone before a renewal will be allowed which cuts it very close). When you add the possible need for oxygen on top of that, I'm so afraid that he will have serious health problems because I screwed up on the meds.

But for now, we will limp through this whole radiation thing. At least once we get up there we will be just a block away from the University Hospital. I've sent a message to the radiation oncologist to see if he can tell me now what the radiation schedule will be so I will know whether to pack for one day or two weeks. And also we have to give our house-sitter a little idea of how long we need her.

Let's hope that tomorrow I have little or nothing to report in this blog.

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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.