Our Walk With Stage IV Prostate Cancer

Saturday, February 14, 2015

Taking a break

Marshall is being released today from the hospital. Supposedly we will have physical therapy at home starting on Monday. Then we come back on Wednesday to get "mapped" for radiation. Then the following week -- if all goes according to plan -- we come back for the radiation.

Then on March 9 we come back to see the oncologist to get started back on a cancer treatment.

I am now going to take a break from this blog. I have no more mental or physical energy left and need to rest and regroup.

Thank you all for the love and support. It has meant the world to us.

I will be back in a few weeks.

Marilyn and Marshall

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Friday, February 13, 2015

Marshall is being discharged tomorrow

They told him today that they were sending him home tomorrow. My panic attack from yesterday doubled in size because I have no idea how to take care of him. I was not prepared for this.

But the hospital found a company that will send rehab people out to our house so that is a good thing.

One day at a time.....

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Thursday, February 12, 2015

Day three after surgery

Marshall got up and walked around the hospital floor today (with his brace on and his walker). He is making fantastic progress. He was moved to the orthopedic floor today, too, so his rehab can be easier.

I, on the other hand, spent the entire day in the emergency room for stress-related symptoms.

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Wednesday, February 11, 2015

Day two after surgery

They got him to a standing position today. She says the hardest part will be laying back down. He has to "be a log." No twisting.

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Tuesday, February 10, 2015

One day after surgery

Today went fairly well. Marshall has pain from swelling of the spine but he has a pain pump to push when it gets out of hand. They tried to get him up today but all he could manage was to sit on the side of the bed. They all said that was very very good for the first day.

There were a few little issues during the day but all in all it went well. When I Ieft to come back to the hotel tonight he was having dinner.

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Monday, February 9, 2015

Marshall is out of surgery

I just spoke to the doctor and Marshall is out of surgery ( it's 8:15P and the surgery started at 5:15P).

The doctor said it went really well and there were no surprises (which he said was a very good thing). He said they removed the tumor "cleanly" and that the screws went in nicely. I believe they also put some "cement" in to strengthen the bones. He said the cement was calcium something-or-other.

He said that until the spine calms down Marshall will be in a lot of pain so he will have one of those pain pumps so he can control his own pain medication.

They will be putting him in what the doctor called a "step down" room. He said that was between ICU and a regular room -- he felt Marshall needed a day or two of extra care.

When Marshall leaves the hospital (in about five days) he will be wearing a brace and he won't be allowed to bend, lift or twist for 3 months. I told the doctor that should be interesting because Marshall is a restless sleeper and sometimes his bed looks like it's been hit with a tornado!

He will be sent to off-site rehab -- we think he may go back to the VA Nursing Home for rehab which would be nice.

In a month or two he will have something called radiofrequency ablation (I will need to get a better handle on what that is) and then he will also have some more sessions of regular spot radiation. So there are still some tough times coming, but if the spinal pain has been removed, he should be able to handle everything else very nicely. We are very excited about this.

Our oncologist called to say that he thinks this surgery was definitely the thing to do and we would revisit further cancer treatment as soon as we settle down from all of this.

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Surgery

A tumor in the spine is the cause of the problems.

Marshall will have spine surgery in about an hour to remove as much of a tumor as possible and put in a few screws.

Then in a month or two he will have radiation to try to kill this tumor all the way. In addition later on he will also have something called radio frequency ablation.

It will be a 3 hour surgery.

More later.

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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.