Our Walk With Stage IV Prostate Cancer: We're back.....

Tuesday, March 3, 2015

We're back.....

I can't say that I'm as relaxed or regrouped as I'd like to be but I'm back anyway.

After Marshall got home from the hospital after the spinal surgery, we had a physical therapist from Centura Home Health come in twice a week to work on his muscle strength again. She made a lot of progress with Marshall. She also arranged for a nurse to come in regularly to check Marshall's vital signs and medications and to also talk about diet. That will be a wonderful thing because she may notice things that I'm too tired to see.

Over the course of several weeks, Marshall's pain diminished gradually until all he had was a bit of soreness from the surgery. So he is weaning himself off of the morphine. He was taking three 100mg morphine pills a day (one every 8 hours) and now he is down to only one every 24 hours. Pretty soon he will experiment with stopping the morphine altogether and see what his pain level is. Hopefully it will be at zero.

We went back to Denver for Marshall to get "mapped" for his radiation treatments. That was a quick one-day trip.

Then we had another emergency visit to the veterinarian for Coco. He has a kind of X-rated problem so I won't go into detail but it requires some additional care for him in addition to his other health issues. Poor little guy.

Then we had to put the physical therapist and the nurse on hold so we could come up to Denver for Marshall's two weeks of radiation. We got here on Sunday, March 1st, and checked into the hotel that we always stay at. It will be a hefty hotel bill but when you consider that so far we have had very little out-of-pocket expense, we thought we deserved the comfort level of this hotel during a stressful time. Yesterday was his first treatment and today was his second. They are scheduled for every day at 5PM (excluding weekends) for 10 days. We are prepared with anti-nausea medication and anti-diarrhea medication just in case. So far, the only side effect he has had is fatigue.

He has slacked off on his exercises but today he got back in the swing of things. It would be terrible to lose ground with his leg strength after all he has put into building it back up.

He still has to wear the bulky intricate brace all the time and he's getting a little tired of it. It looks like a bulletproof vest! We see the surgeon on Monday for our post-op visit and we hope that he will tell us the brace can come off soon. The surgical incision has healed nicely.

He felt pretty good today after the radiation treatment so he wanted to go to Panera for dinner. He decided not to use his walker but instead to just hold onto me to go in and out of the restaurant. Bad idea. On the way out his legs gave out and he kind of slid to the sidewalk. Two lovely young people ran over and got him back up. We won't try that again unless the physical therapist says he is ready for it.

We will also be seeing the oncologist while we're here (on Monday) for lab work and to discuss what kind of treatment Marshall will be on going forward.

I'm still having anxiety attacks (palpitations and balance issues) but after 12 hours in the emergency room, several EKGs and an MRI of the head, nothing was found, so I guess I'll live. Tricia found an online meditation course and we both took it. It helped a lot. The "mindful" breathing showed me that I was constantly holding my breath so now I spend a lot of time concentrating on breathing. I no longer need the oxygen. It was a happy day to learn I don't have to lug that oxygen tank around any more -- and it's a great motivation to keep up with the mindful breathing.

I think I've caught you up. I will try to report regularly from here on out.

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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.