Our Walk With Stage IV Prostate Cancer

Saturday, January 4, 2014

Had to chase down Marshall's cancer drugs today

The renewal of Marshall's cancer medication was scheduled to be delivered yesterday, but we had to run to town and we missed the FedEx guy. So he didn't leave the package. That meant that today we had to run to Pueblo to the FedEx facility and pick up the drugs. Marshall only had two days supply left and we didn't want to take a chance.

But it was snowing a bit today so the ride to and from Pueblo was a little slippery for me. I was so glad to get back home.

And Monday is our next visit to the cancer center for bloodwork and a new PSA test. We always get a little anxious on those days.

Monday we will also be seeing the psychologist together.

I will report back on Monday or Tuesday.

[Tommy, if you are reading this, I hope you have weathered your chemotherapy and are on the mend -- we've been thinking of you...]

- Posted using BlogPress from my iPad

Wednesday, January 1, 2014

Christmas Photo

Christmas 2013
Back row: Marilyn, brother Bob, daughter Tricia (cat Hopscotch), sister Linda
Front row: Marshall, niece Margaret (Jack Russells Buster and Tyke), great-niece Ellie,
Margaret's husband Cody, sister-in-law Liz and son-in-law Ed.

HAPPY NEW YEAR, EVERYONE!

Monday, December 30, 2013

Christmas in St. Louis

This was one of the best Christmases ever. We had such a good time. My daughter Tricia hosted all of us and we spent two days with lots of good stories, good food and LOTS of healing laughter. Today my sister Linda and I drove over to Freeburg, Illinois -- where we grew up -- and drove around town looking up the house we spent 20 years in, as well as friends' homes, the malt shop, etc. etc. I hated to see this weekend end.

When I get home, I will post the group photo (it uploads better from my laptop than my iPad) but for now here are a few photos.

My brother and sister-in-law gave us all "miners" flashlights that you wear on your head! This is my sister Linda and my son-in-law Ed.

Daughter Tricia with her headlight:

Marshall got a West Virginia gnome, along with some 3D movies and popcorn.

My niece Margaret with her daughter (my great niece) Ellie. Ellie just turned 3 so this was SO much fun.

Ellie got a big pink elephant.

My brother also gave us strobe flashlights and we had a light show on the ceiling.

-Posted from BlogPress on Marilyn's iPad.

Thursday, December 26, 2013

Happy Holidays

We had a lovely Christmas -- went to dinner at a neighbor's house and had a great evening.

This morning our house sitter showed up at 7:30A and we hit the road at 8A on our way to St. Louis. We stopped for the night in Salina, Kansas and are kicking back and relaxing before finishing our journey tomorrow.

The trip is going really well. Marshall hasn't had any pain and his energy level has been pretty good. Yay!

- Posted using BlogPress from my iPad

Saturday, December 21, 2013

Ice

Thank you for the tips on our winter patio ice skating rink!!! We didn't get to town today but we will tomorrow and we will follow through. This ice is treacherous.

We are scheduled to leave Thursday to drive to St. Louis. The weather in the midwest is looking ugly -- I hope it clears up before we leave.

Nothing else interesting to report.

- Posted using BlogPress from my iPad

Thursday, December 19, 2013

Dentist

We went to the dentist and he decided to re-line Marshall's dentures with a temporary liner to see if that helps any. If it does, then we will try getting them permanently relined. So far, so good.

The snow we had a few weeks ago is still lingering on the ground, which would be okay except that every day the temperature gets above freezing just long enough to cause some snow to melt (but not all of it) and then it freezes again and we now have an ice skating rink outside our door. It is very dangerous and we can't figure out what to do about it. The poor dogs slip and slide every time they go out and we have to be very careful when Marshall goes out. A fall right now would not be a good thing for him.

We are getting ready to go to St. Louis the day after Christmas to spend a few days with family. Looking forward to that. Last Christmas Marshall was in so much pain that Christmas was a nightmare. It's looking like this year will be much better!

Tuesday, December 17, 2013

Fun days

The past few days have been delightful. Marshall has felt really good so on Saturday we went over to straighten up and re-stock our booth at the Marketplace Shops in Canon City. We did some shopping and had lunch. On Sunday we went to lunch at a new restaurant in town. This one is so promising. Their menu lists southern cooking and so far Marshall has enjoyed comfort food like fried green tomatoes, fried baloney sandwich and biscuits and gravy -- all delicious. Very different from all the other restaurants in town.

Yesterday we bummed around in Canon City again and today we cooked a meal together. We haven't done that in years. And since his diagnosis he hasn't been able to stand at the counter long enough to cook. So today was a lot of fun.

Tomorrow he has a dentist appointment to see if the dentist can come up with anything that can be done with Marshall's dentures.

- Posted using BlogPress from my iPad

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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.