Sunday, March 31, 2013

15 days of no pain

Marshall has now had 15 straight days of no pain.

He is having more severe hot flashes but they don't last long. And he thinks that he is more fatigued than he was, say, 4 months ago, before the excruciating pain started. But from my perspective, comparing him to 4 months ago, he is like the Energizer Bunny these days! What a difference.

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Tuesday, March 26, 2013

2-week checkup

Marshall has to be monitored every 2 weeks now that he is on the new drug, Zytiga. Today was the first monitoring visit to the Cancer Center.

We got there at noon and had the lab work done. Then we saw Dr. Flaig's Nurse Practitioner to go over the results.

I have to say that I got very confused at this visit. I usually write everything down and leave with a decent understanding of what's going on but even though the NP was very clear and answered all our questions, I was still confused.

But here's what I think we went over: Marshall's liver and kidney functions were fine (and that's the main thing they are checking). But his calcium levels and Vitamin D levels were low. I think she said that this didn't have anything to do with the Zytiga but instead was associated with the Xgeva (the bone strengthener) injections that he's been getting. One of its side effects is hypocalcemia or low calcium levels.

I also think she said we would maybe delay the next Xgeva injection until we check the Vitamin D and calcium levels again. She said to continue taking the Citracal every day because it has elemental calcium and that's the best kind but that the Citracal should be taken on an empty stomach. This presents a problem. We have so many medications now that can't be taken at the same time and some on an empty stomach, some with food, that we are not sure we can work out a schedule that will fit every dosage instruction. I think I need an Excel spreadsheet. :)

She also said that she prefers he gets as much calcium as possible from food and she gave us a list of food items and their calcium content. But she said to try to not take the Citracal close to the same time he eats a dairy product because it doesn't absorb as well. On the up side, though, on her list of food items that contained elemental calcium is ice cream!

Then she talked about the prednisone. Marshall had gained a few pounds and the NP said that the prednisone could be increasing his appetite and that if he continues to gain weight they will probably need to adjust the prednisone to a lower dosage. My mind is racing -- since the prednisone is a part of the cancer medication team (Zytiga and prednisone), won't it be less than optimal to adjust the prednisone to a lower level? I'm having trouble keeping up.

But we go back in another two weeks -- on April 8 -- for more lab work, and this next time there will also be a PSA test, and I'll try to get a better grip on it then.

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Monday, March 25, 2013

The Scooter Store has gone out of business!!!

Marshall got his power chair from The Scooter Store.  I then ordered several hundred dollars worth of ramps.  I waited three weeks and they didn't come and The Scooter Store didn't respond to my emails and they didn't respond to voicemails.

Today Marshall finally reached someone in Customer Care and they told Marshall that The Scooter Store is basically now out of business.  They have laid off a lot of people and the only department that was going to remain running was the service department.

They said they would forward my request for a refund to their refund department but does anyone think I'll actually see that $250 again?

I paid them through PayPal so I thought I could go to PayPal for help but, oh no, it appears that buying from a PayPal Verified Seller doesn't really mean much.  I have to submit a complaint and wait 45 days for the Seller to reply (since they are out of business that means I'm just waiting 45 days for nothing).  Then I can file a claim with PayPal and they basically go through the same thing and it could take two to three months to even get a response from PayPal as to their final decision with regard to the claim.  I don't have high hopes of getting my money back.

So in the future I won't be using PayPal to pay for anything other than eBay purchases.

PS:  Marshall is still pain free and we had another great day.

Sunday, March 24, 2013

More of the same :)

Just a quick note -- things are still great. No pain. Much more energy. Out and about living life. We love Zytiga.

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Thursday, March 21, 2013

Days 8, 9 and 10 of Zytiga/Prednisone

Tuesday (3/19), Wednesday (3/20) and Thursday (3/21) -- all pain free and active.

On Tuesday, March 26, we go back up to Cancer Center for bloodwork to test for any side effects to liver, kidneys, etc. This bloodwork will need to be done every two weeks as long as he is on Zytiga. They won't do a PSA test until early April because our oncologist says that doing PSA tests too close together is like "chasing your tail."

But we are told that with this drug we should not be concerned if the PSA rises before it goes down. The important thing is how the patient is feeling.

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Monday, March 18, 2013

Days 5, 6 and 7 of Zytiga/Prednisone

Day 5 (Saturday) - horrible day, pain and moodiness

Day 6 (Sunday) - pain seems to be less. And Marshall actually got outside for more than an hour and helped me get the truck ready to trade in. Kelley Blue Book says we can get $25,000 trade-in for the truck. I find that hard to believe.

Day 7 (Monday) - got up early to go to Toyota dealer and see about trading in truck and getting new 4Runner. Woke Marshall up and he was pain free for the first time in weeks and weeks.

Went to Pueblo Toyota, spent hours there making deal for new car (Kelley Blue Book was right!), went to lunch, went shopping, got home around 4:00 ---- and still no pain.

And we now own a Salsa Red Pearl Toyota 4Runner which is plenty big enough to put a hydraulic lift in the back to load Marshall's power chair when we go places!

So he is exhausted but he had a pain free day.

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Friday, March 15, 2013

Day 4 of Zytiga/Prednisone

He still has pain, but it seems like it is lessening just a little bit every day. Still lots of fatigue and long naps.

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Thursday, March 14, 2013

Day 3 of Zytiga/Prednisone

Marshall had some pain today, but it wasn't "over-the-top" like it's been. Can't say for sure yet, but the pain seems to be lessening. His sugar levels dropped this morning during that time period when he needed to keep his stomach empty so we had to call the oncologist's office to see what to do. We spoke to Sarah and she said to give him orange juice and maybe he should consider taking the pills at a different time of day.

And then there's me: I have a nondangerous heart condition called supraventricular tachycardia. It's where sometimes the top of the heart beats at a different rate than the bottom and the pulse gets up over 200. It feels very much like a heart attack, but I know now that it isn't. For me, this comes on when I've been drinking too much coffee, which I have definitely been doing this past year. And the episodes usually start out with me fainting and then the irregular heartbeat lasts about an hour or a little more.

Well, I had one of those tonight and poor Marshall was trying to help me in any way he could from his Power Chair -- we were like the blind leading the blind. It started at 6;30 and at 9:30 the heart rate was still at 185. And I was doing all the silly things the cardiologist had told me to do: plunge my face into a bowl of ice cold water, hold my nose and then blow, cough, etc. Just when we thought the heart was not going to go back into rhythm on its own, all of a sudden it did. Then I was left with a slightly sore chest and a headache.

My sister has a more serious version of this -- atrial fibrillation -- and when her heart goes out of rhythm, she sometimes has to have it shocked back into rhythm. I'm the lucky one....

But guess what? I really think I'm going to be able to give up coffee for good this time. This was a miserable evening.

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Wednesday, March 13, 2013

Day 2 of Zytiga/Prednisone

Today was the second day of the new medication. Marshall was exhausted again and took another long nap. But at least the pain today was the normal everyday (2 oxycodone/3 Advil in the morning and evening) kind of pain and not the kind that needed morphine. I guess that's good news.

I thought I'd get my truck back today but the repair shop is fighting with the insurance company about some charges, so Farmers has approved the rental car for another few days. I have no problems with that -- I am loving this 4Runner.

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Tuesday, March 12, 2013

Day 1 of Zytiga/Prednisone

This morning at 9:00, Marshall got his first dose of Zytiga (which I dispensed wearing rubber gloves and using long tweezers to grab the pills!). Then at 10:00 he had a little breakfast along with the 5mg prednisone pill. He tried to not take any pain pills this morning but the pain got too bad and he took his pain pills, too. At 10:30 he couldn't hold his eyes open and went back to bed for three or four hours.

When he got up around 2:30, he felt okay with minor pain. At 5:30 he had his second prednisone pill. He started feeling pain again so he took the regular oxycodone/Advil combination. The pain quickly escalated to excruciating and he needed a morphine pill. About 30 minutes after the morphine, the pain subsided and he felt better. I hope this is not going to be the daily routine on this new medication.

I have developed a VERY high regard for the men and women who choose nursing as their life's work.

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Monday, March 11, 2013

We have a ramp

Our friend Bill came over and gave us his time and materials to build a ramp that will help Marshall get in and out of the house with his Power Chair.
When he finished, he prayed over Marshall and that was very moving.

Bill working on the ramp on a snowy day.

Ramp is done -- now I need to paint it. Bill tells me to mix an oil based paint with sand to give it a nonskid surface.

I had to close the blinds to keep all the animals from being on high alert while Bill was working outside the window ... but Okie managed to find a spot where he could keep a close watch.

On another note the pharmacist told me to wear rubber gloves when dealing with this new drug and if any women of childbearing age need to handle these pills, it is IMPERATIVE that they wear gloves and wash their hands afterwards. Wow.

Saturday, March 9, 2013

Thoughts on PSA

In my nonstop research of all things prostate cancer, I came across this blurb that really helps to put some things in perspective and I am posting this for the men with prostate cancer (and their wives) who read this blog:

Mr. X was diagnosed in 2008 with a PSA of 7,000 ng/ml - YES, SEVEN THOUSAND - with a diagnosis of Stage 4, a diagnosis that would have most people predicting a survival that might be measured in weeks or months rather than years. A year later, he commented that his PSA was now down to 240 ng/ml and he was feeling OK.

His comment just demonstrates how men react in so many ways to such a wide variety of PSA levels. While Mr. X was OK with his 240 PSA and another guy is happy with his PSA of 6.4 because it was down from 15, there were men concerned about a PSA of 4.2 because it had 'gone up' from 3.9, and other men considering salvage therapy in the light of a perceived increase in an ultrasensitve PSA.

So there are differing levels of PSA which might be considered appropriate in differing circumstances. The man who has had surgery will have different concern levels from the man who has had radiation or the man on hormone therapy. But.....how often are PSA movements predictive of a fatal outcome, even in the long run?

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Friday, March 8, 2013

Zytiga is on the way

The pharmacy called today and did the phone "screening" -- lots of questions and instructions -- and then took our credit card info for the copay. They are shipping the medication by UPS overnight and we should have it Monday morning. Marshall will start taking it on Tuesday. He has to take prednisone along with it.

He needs to be closely monitored while taking this drug so we will be going either up to the University or to our clinic here in town every 2 weeks for lab work.

March 17th will be the one-year anniversary of the actual cancer diagnosis. I look forward to many more.

I talked to some friends today -- Bill & Eva -- and Bill is going to donate his time and materials and come out next week and build a ramp going out our front door so that Marshall can get outside with his power chair. That brought unexpected tears! How nice.

This has been a very tough few weeks for Marshall. His PSA went up, he got turned down for the clinical trial, the Zytiga was almost not approved, he continues to be in lots of pain, and he is trying to shake off the depression. It seems like all we do is wait for one thing or another at a time when we should be living the best life possible.

My truck is still in the shop being repaired and I have fallen in love with the Toyota 4Runner rental vehicle we got. :)

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Thursday, March 7, 2013

We have been approved for Zytiga!

We got a call from the oncologist's office this morning.  They found a pharmacy that has approved us for the Zytiga with a relatively small co-pay.  What wonderful news.

The pharmacy will be calling us later today to get delivery of the drug set up so we should have it by Monday or Tuesday and Marshall can get started on it, along with the prednisone that has to be taken with it.

That's all I know right now.

Wednesday, March 6, 2013

Medicare won't pay

Several phone calls today from the finance people -- Medicare won't pay for the Zytiga and the cost is $5,000 a month. The finance person says she will submit an application for us for financial assistance. Now we wait some more.

In the meantime, the pain has not subsided and Marshall stays zonked out every day on oxycodone and Advil.

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Tuesday, March 5, 2013

Bad news regarding the clinical trial

Dr. Flaig called this evening to say that Marshall has not been accepted into the clinical trial. Evidently his bloodwork showed a "low threshold" for clotting and their requirements strictly forbid any participant with a propensity for blood clots. It is a VERY depressing day.

So we move on to another drug -- Zytiga -- and we are now entering a phase of this treatment where Medicare may not pay and this drug is $5,000 a month. Dr. Flaig will have the hospital's financial whiz work on this and then call us to tell us where we stand. That could be another depressing day. But no use putting the cart before the horse.....

I am now signing off to start researching and see how much I can learn about Zytiga (and the prednisone that needs to be taken with it). Dr. Flaig is going to try to get Marshall started on this drug in the next few days.

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Friday, March 1, 2013

Today's visit to oncologist

First thing on arrival at the hospital, Marshall was sent to radiology for x-rays of the left and right femur to try to see if anything has changed that would cause the leg pain he's been having. We won't get those results until over the weekend or on Monday.

Then blood was drawn to see where the PSA stands today. Before we could talk about the clinical study for GTX-758 (an estrogen treatment), the PSA needed to be rising. If it went down, he would not be eligible for the clinical study and we would have to go a different direction. Well, the PSA was 31.06 ... almost tripled in six weeks. Kind of a downer, but on the plus side, it definitely makes him eligible to apply for the clinical study. (Note: today's tests showed that the testosterone level, which is the hormone that feeds the prostate cancer, has gone down to less than 20ng/dL. I just did some quick research and learned that the castration level of testosterone -- which is what they are shooting for in prostate cancer treatment -- is right at 20 or below, so to me that is progress.)

But also, in order for Marshall to be eligible for the clinical study, he needed to meet certain criteria, one of which was a BMI of 35 or lower. We knew it was going to be close. When he got weighed when we arrived, they calculated his BMI at 35.1. Bummer.

But we had a really cool nurse and she asked Marshall if he wanted to try again with all his clothing and jewelry off and, of course, he did. So he stripped down, removed all jewelry, put a hospital gown on and went to the scale again and woo-hoo, the BMI worked out to 34.7! So that hurdle was conquered.

They went over the initial paperwork with him and he signed all the consent forms. They took DNA swabs (not sure what that was for but she said they had to sign a release saying they would not send any results to the paternity database!), they took a urine sample, and then they took a bunch of blood. The bloodwork was to assess his propensity to possibly have blood clots. They will get the results of these tests back in the next week or two and then he will be contacted to see if he has been accepted into the study. I know Marshall is going to worry himself silly these next two weeks constantly thinking about a rising PSA, but hopefully he'll also think of the lowered testosterone.

Our oncologist says that he thinks this GTX is going to be the treatment of the future for prostate cancer patients. The initial studies have shown that there are very few side effects and the results have been extremely promising. Marshall suffers from extreme hot flashes now and the GTX takes away the hot flashes. The GTX also strengthens the bones.

So now we wait. One of the things I love about the clinical trial is that Marshall and the other participants will be monitored very closely (way closer than he is being monitored now) and to me that is very comforting.

In the meantime, over the past several weeks Marshall has slowly but surely come up with a painkiller regimen that has been working rather well. In the morning he takes an anti-nausea pill. Then when he feels the slightest onset of leg pain he takes two oxycodone along with four Senokot laxative pills and 30 minutes later he takes 3 Advil. Last night we even went out to dinner (thank you, Donna & Russ!).

We are all settled in a hotel room now for tonight. He's going to visit with his nephew this evening and I'm going to kick back and read a book on my new Kindle (I want to see what all the Kindle fuss is about.)

Stay tuned for updates.
PS: We asked Dr. Flaig about whether the leg pain could be caused by the Xgeva injections and whether switching to an alternative bone strengthener (like Zometa, given by IV) might relieve that situation. He said that every man is different and it is possible but that the toxicity of the Zometa is dangerous and his advice would be to stay on Xgeva. So that's what Marshall will do.

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