Our Walk With Stage IV Prostate Cancer: Today

Thursday, February 25, 2016

Today

This morning I was feeling very upbeat about seeing the doctor today (appointment was for 2:45). Also, I got a call this morning from the guy at the University and he gave me a few places to call for a widow/widower support group. I'll make those calls tomorrow.

At 1:00 the doctor's office called to say that Dr. Pacheco had an emergency and they needed to cancel the appointment and he didn't have another opening for a week. I kind of lost it and burst into tears. She said she would keep me posted if the doctor got back to the office.

When I calmed down, I called her back and asked if I could come in anyway and see the nurse to get my INR blood work done. And I reminded her that they were supposed to "interrogate" my pacemaker today. She told me to come on in.

My INR was 2.7 and the nurse said that was good.

The pacemaker rep did the interrogation of the pacemaker and ran a few tests and then said he had to go call the doctor. I asked him if he made any adjustments to the pacemaker and I can't remember what he said -- I've got to clarify that tomorrow.

Anyway, he came back in and asked if I could wait around for a few hours because the doctor needed to see me. That couldn't be good. The rep said that one of the leads on the pacemaker had gotten a little loose and it looked like I needed to have another surgery to have a new pacemaker implanted. Just what I wanted to hear...

So the doctor got back around 4:30 and he took a look at the interrogation report and examined me and here's how he explained it (Or at least the way I interpreted what he said): One of the reasons I am having some of the problems I've been having is because of this loose lead. It's causing a bit of shakiness. And he said that this situation can be caused simply by the body's attempt to accept this foreign object and that it is possible it can right itself so he wants to see me in two more weeks to check it out again and we can hope I will not need the surgery.

But if we do need to do the surgery, he said, it's best to do it now and get it over with before things get too settled in the body. The longer we wait the harder it would be to remove whatever needs to be removed which would make it a more extensive surgery. I'm not sure if I got all of that right, but that's the way I understood it.

So I go back in two weeks to see what the future holds.

I talked to the doctor about the dizziness and the numbness I've been having and asked if it could be related to the Afib medications which he had increased over what I had been taking when I left the hospital and I told him that it seems like those symptoms are the main side effects listed for these medications. He said he did not think these medications caused any of my symptoms -- he thinks it is more likely to be me still getting used to the pacemaker. I asked him if I could decrease these medications to see how it goes and he gave me permission to cut down the Flecainide from 150mg twice a day to 75mg twice a day but not the Metoprolol. He said he didn't want to lower them both at once. So we will see how that goes.

The doctor saw that my INR reading was 2.7 and he said he'd rather see it at 2.5 (even though his nurse told me it should be between 2 and 3) so I have a new goal.

Now I really need to be sure I find a pet-sitter, don't I?

- Posted using BlogPress from my iPad

1 comment:

TspoonFebruary 26, 2016 at 5:02 PM
Oh Marilyn, I hate to hear all this. No wonder you have been feeling so badly and certainly even depressed.

I hope you find a group to connect with soon or maybe just make a new friend. I will send good thoughts your way, Terri
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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.