Our Walk With Stage IV Prostate Cancer: September 2013

Sunday, September 29, 2013

RiverWalk again

Yesterday was so successful, we went back to the RiverWalk today and Marshall really can handle that Power Chair. We also visited the Vietnam Memorial today.

San Antonio on Saturday

Today we decided to try to get to the lively part of the Riverwalk (our hotel is at the very end of the Riverwalk and there's nothing going on here).

San Antonio

We are having a nice time in San Antonio.

Our Chicago friends, Sue and Stas', came in Thursday night and they stayed at the Bed & Breakfast in Westcliffe (called Over The Brim). Boy, that place was absolutely incredible. I can't believe I didn't know about it before. It took pampering to a whole new level. Marshall and I joined them for breakfast Thursday morning and since we were eating outdoors, she left fluffy warm blankets on the ladies' chairs.

She served something she called French Toast. It didn't even resemble any French Toast I've ever had (or made) but it was incredible.

Then we brought Sue and Stas' out to our house and we spent the day catching up.

Thursday night we joined them again at the B&B for the evening wine and snacks. Again, it was incredible. They close down at the end of September for the winter, but it would be a great place for Marshall and me to spend the night as a pampered getaway. There were little alcoves everywhere and 5 or 6 patios, some of them hidden, some with awesome views of the mountains, with flowers and bushes everywhere. And the proprietors wouldn't let you lift a finger for anything.

Then Sue and Stas' left and we have started our packing and planning for our trip to San Antonio.

Sue, Stas', Marilyn, Marshall -- at B&B

Marshall, Sue and Stas' -- breakfast at B&B

Stas', Marilyn, Coco, Marshall and Sue -- at our house

Thursday, September 19, 2013

Pain

Today Marshall had his left knee x-rayed to try to figure out what is causing the pain.

The doctor called this evening to say that the X-rays showed a perfectly healthy knee. No arthritis. No cancer. So what is causing the pain? Must be a side effect of medication and there's not much we can do about that.

So this was a meltdown day.

Friends from Chicago will be here tomorrow and on Monday we head to San Antonio for his military reunion. We will be towing the bike so he can display it at the reunion but he doesn't feel comfortable riding it. Legs hurt too much.

- Posted using BlogPress from my iPhone

Friday, September 13, 2013

Gene Testing in Prostate Cancer

This is for any prostate cancer patients who follow this blog:

The following link is to the website of a burgeoning research company that will be collecting saliva for free genome sequencing of prostate cancer participants. In exchange for the free service they would be collecting your genetic info to put in a mass database regarding prostate cancer genomes. They are awaiting approval before they get started but you might like to pop on your email address to get in line. I understand that they do give you results regarding your genes. Since the tests usually cost between 5 and 10 thousand dollars I thought it might be worthwhile to check it out.

Http://myprostatehealth.us

I put Marshall on the list and if anything comes of it, I will report back.

In the meantime, feel free to share this link with others who may be interested: http://lnc.hr/p2aYD

Monday, September 9, 2013

Physical therapy

Today Marshall started his physical therapy and so far, so good. He made it through the hour doing very smooth and easy stretches and moves. This will be a good thing.

Scorpions

We have neighbors who have lived here for 20-plus years and they have NEVER seen a scorpion. Why is it that since we got here in 2003 we have seen about 7 of them? I get a little freaked out but since 6 of the scorpions we've seen were dead or close to it, I thought maybe they came with our house (which came from Texas) and they were dying off.

But tonight, our cat (Okie) was playing with something and when I looked down, I thought "well, that's a weird bug," and then I looked closer and IT WAS A SCORPION. Alive and well and moving fairly quickly. I don't handle crawly things very well, so I started yelling for Marshall who, as you know, moves very slowly these days. I managed to summon the courage to get a paper plate and keep the scorpion in one place until Marshall got there to kill it. Now I will think about scorpions every time I put on a pair of shoes...

And earlier today my cute little dog went outside and came back to the door eating a rat. There was nothing I could do. He ate the whole thing. I knew that within a few hours he would be throwing it all up. And since Marshall had been nauseous all morning, I went shopping and told Marshall I would come back after everyone was finished being sick.

On top of all that, Marshall still has leg pain and we are using painkillers again to try to control the pain.

THIS HAS BEEN AN AWFUL AWFUL DAY!!!

- Posted using BlogPress from my iPad

Thursday, September 5, 2013

Doctor appointment

Today was the appointment with Marshall's primary care physician. Marshall woke up feeling really bad so it was tough for him to get to the car and then into the doctor's office, but he did it.

Cancer Walk

Yesterday I participated in a 3-mile cancer walk here in town (Custer County Cares About Cancer).

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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.

Our Walk With Stage IV Prostate Cancer