Our Walk With Stage IV Prostate Cancer

Tuesday, February 26, 2013

Snow and slick roads

It was snowing a little bit this morning and I had planned to go to Canon City today to pick up a few things at Walmart. I took my truck and since it has 4-wheel drive, I decided to take the back road which is mountainous but much shorter. It is a 25-mile drive.

About 12 miles down the road, I hit a patch of ice and slid off into a deep ditch, slid for about 25 or 30 feet, barely missed a rock wall, and veered back up on the road. I saw my "low tire pressure" light come on. It is not a well populated road, but I knew there was a small country restaurant/fire department/cowboy church/combination called The General Store a few miles down the road, so I kept on driving. I made it there and they were closed but they have a nice parking lot where I could assess the damage without being a sitting duck out on a very narrow snowy road.

By that time, I had a flat tire. The running board was broken in half and the driver's door was scratched up. The people who own the General Store (and who also live there) came out and told me to come in and use their phone (there's no cell coverage along that road). So after a few hours, the tow truck came and got my truck and I called another friend who came and picked me up and drove me home.

And here's an interesting side story: Coco goes with me everywhere and when I leave the house he is right behind me waiting to get picked up and put in the truck. Today he followed me out but he absolutely refused to get into the truck. And when I tried to pick him up, he ran back to the house and wanted back in. He simply would not go with me. Very very unusual. Perhaps I should have paid attention??

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Monday, February 25, 2013

X-rays are being scheduled

Heard from Dr. Flaig this evening. He is going to order another round of x-rays for this Friday to see if he can figure out exactly what is causing this leg pain.

Some of the guys on the message boards that I subscribe to say that Xgeva (the bone strengthening injection that Marshall gets once a month) can cause bone pain in some of them and when they switch to a different bone strengthener (like Zometa, which is an intravenous infusion) the bone pain goes away. If the x-rays don't show anything on Friday, we will discuss the Zometa thing.

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Saturday, February 23, 2013

PAIN

Can't seem to get a handle on the pain for any measurable length of time. And now there is also nausea every morning. I've been able to try to be there for him for all of the things that are happening, but I can't handle the nausea. I just can't. When the nausea starts, I run for the hills (disappear into another room of the house). Depressing.

Looking forward to Friday when we see the oncologist again and we will discuss a complete change in treatment. If morphine isn't totally conquering this pain (and adds nausea and constipation to the mix), there has to be another option.

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Thursday, February 21, 2013

Another day of pain control

It was another day of barely keeping ahead of the pain. But for the most part, he stayed ahead of it, even if it did keep him a bit groggy.

We had about 8 inches of snow last night so it was a good day to stay in and look at the beautiful view of snow-covered mountains.

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Wednesday, February 20, 2013

Controlling the pain

Well, the TENS unit didn't really do the trick with regard to pain. But it was a nice try.

Marshall is getting used to his Scooter.

And he has been meeting the pain head-on rather than waiting until it's off the charts and that has been working really well. At least it appears so to me. He takes several Advil when he gets up in the morning and then the second his leg starts to twinge with pain, he takes more medication and then again when he goes to bed. He can't really go anywhere, but at least he is managing the pain.

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Monday, February 18, 2013

The Scooter arrived

Saturday, February 16, 2013

TENS Unit

Today I was doing more endless researching while Marshall was trying to control the heavy pain he had and I found several message boards where guys were using TENS units for pain (I think that's Transcutaneous Electrical Nerve Stimulation). We happen to have one of those things (they really work well on back pain), so we got it out and attached all the leads to Marshall's right leg and turned it on.

He thinks it might be helping, but he's also taken an oycodone, so we'll have to wait a while. If he's still got all this pain on Monday, I'm going to call the acupuncturist here in town. Can't hurt and might help.

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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.