Tuesday, October 30, 2012

Still experiencing some side effects

Yesterday, Marshall was still experiencing fatigue and hot flashes. We went to town to get the motorcycle (we left it at a friend's business in town when we got back last week until we could secure it in the trailer good enough to endure the several miles of extreme "washboard" road leading to our house). So yesterday, Marshall and his friend Pat attached some 2x4's in the trailer so that the trike wouldn't move around in the trailer on the ride home. We went to lunch and then came home, unloaded the trike, and then Marshall rested.

Today he had an appointment with the ophthalmologist in Canon City and by the time we got home he was having pain and discomfort in his legs. A few Tylenol seemed to settle it down a bit but not enough to really do anything.

He's been keeping in touch with his daughter Tanya (in Richmond, Virginia) and while she was totally prepared for the possible problems of Hurricane Sandy (she had food, water and flashlights), Virginia only suffered high winds and minimal power outages. So she and the grandkids weathered it okay.

Tomorrow he has an appointment to get a haircut. He hasn't had to do that in many years. It will be a novel experience.

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Sunday, October 28, 2012

Side effects of Lupron injection

Well, those pesky side effects have shown up again after getting the Lupron injection on Thursday. Marshall has been having a lot of pain at the injection site, but each day it lessens.

And the fatigue came back. He had been feeling so much more energetic lately but the injection brought all the fatigue back. He says his legs feel like dead weights.

It's not as bad as it's been in the past, though, so that's a plus. Hopefully the fatigue will disappear quickly.

Other than that, he feels really good.

On Friday, we were at Care & Share for several hours to pass out pet food and he held up really well. Then last night we went to a neighbor's 50th anniversary party and had a really nice time. Today has been a laid back day.

Marshall's daughter lives in Richmond, Virginia, and we are anxiously watching Hurricane Sandy's path.

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Thursday, October 25, 2012

Another cancer treatment under our belt

We left around 10:00 this morning and drove up to the Anschutz Cancer Center. The snow had stopped so we got up there without any weather issues.

We saw the nurse and all of Marshall's vitals checked out fine.

Then we had a brief visit with Dr. Flaig. We asked him to go over the bone scan and CT scan results with us again because we were a little confused about the purpose of the CT scan. He said that the CT scan was to check the soft tissues and the bone scan was to check the lesions in the bones. And the CT scan showed a few small nodules in the lungs which the radiologist indicated was probably related to smoking. We need to monitor those as we go along. (Marshall has now quit smoking!!)

He said the bone scan showed no change from the previous scan that was taken in April.

So Dr. Flaig said the bone scan is the more important test. And we are all happy that there was no change.

We also talked to Dr. Flaig about Marshall's pain issue last week. He said that since the injection of an anti-inflammatory got rid of the pain, he believed it has to be caused by something like a pulled muscle.  He said that if that had been cancer pain, it would not have gone away like that.  So that was good.

Marshall then got a flu shot and his Lupron injection. Then we went up to the lab and he got his Xgeva (bone strengthener) injection.

We left there around 5:00 and by then it was snowing and we went through some flurries on the way home. The roads have been opened again at the forest fire area and the fire is now 65 percent contained. Fourteen homes were destroyed. At least the wind died down and it snowed a little and both of those things helped with getting the fire under control.

We go back on November 21st for another Xgeva injection and a PSA test so we can see if the Casodex is doing what it is supposed to be doing.

Marshall has been feeling really good, his energy levels have been up and his frame of mind has been positive. Yay!

Tomorrow is pet food distribution day at the Care & Share Center.

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Wednesday, October 24, 2012

Wildfires and Snow

Tomorrow we head up to the University for Marshall's next treatment.  We'll have to take a detour to get out of here because the fire at Wetmore still has the roads closed.  It is now up to 1200 acres and 14 homes have burned.  They have evacuated the entire town of Wetmore and the fire is still not contained.  I sure hope they get it under control, it's so sad.

They predictions of snow for tomorrow are now calling for one to five inches.  We will be taking the truck with the 4-wheel drive just in case.

One of my friends here in Westcliffe -- only about 63 or 64 years old -- died yesterday in her sleep.  That is such a shock.  I still can't believe it.  My prayers go out to her family, both here and back in St. Louis.

And here is a picture of Marshall and two of the boys relaxing in their La-Z-Boy.  And Marshall's hair continues to grow....

Marshall, Okie and Coco

Tuesday, October 23, 2012

Busy Day

Today we drove up to Colorado Springs to pick the motorcycle up -- and it appears that the satellite radio might actually be fixed this time. It will take a few more rides to be sure.

The weather was a little cold in the morning but it warmed up during the day, and Marshall felt good all day long!

On the way home, as we approached Wetmore, the road was closed because of a wildfire, so we had to backtrack and go another route about 20 miles out of our way. The fire is about 30 miles from our house and when we got home (finally) we checked the news and the fire has already burned about 800 acres. They are evacuating people and several structures have been destroyed. Don't know the cause of the fire yet. But it was incredibly windy today which doesn't help in fighting the fire.

Tomorrow should be a quiet day and then Thursday we head up to the University, hopefully in dry ... not snowy ... weather.

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Feeling Much Better

Good news. Marshall felt better and better all day Sunday and this morning (Monday) was better yet. He did not need any pain medication today.

As a matter of fact, we went to Pueblo to run errands and had a very nice day together.

Monday night I got on one of my favorite prostate cancer forums, For Ladies Only, and asked about Casodex side effects. Four out of 10 women reported back to me that when their husbands were on Casodex it threw their arthritis into overdrive, so it just seems to me that since the anti-inflammatory injections took the pain away (while the oxycodone didn't), the pain had to be joint inflammation pain (arthritis) as a result of the Casodex. That sounds reasonable, doesn't it? Don't you love the way I am forming medical opinions?

I'm writing this in the wee hours of the morning because it is so windy here in our mountains that it sounds like a hurricane outside. My dachshund, Coco, is terrified and is clinging to me, so since I'm awake and listening to the howling, as well as the deck furniture flying around, I might as well be on the computer.

Tomorrow (Tuesday), we are going to run more errands. Marshall's motorcycle is back at Harley to try to get the darn satellite radio to work and we are going to go up and get the bike and bring it home before the snow hits, which is supposed to happen on Thursday. And Thursday is also our next appointment up at the University Hospital for Marshall's next Lupron injection and Xgeva injection. Should be a fun trip.

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Saturday, October 20, 2012

Another injection, pain lessening

Today we went back to the doctor and Marshall got another injection of the anti-inflammation drug. He feels much better than he did a few days ago. Since tomorrow is Sunday and the clinic isn't open, we can't get him another injection, so by Monday the injection will have worn off and we'll know if this pain has died down. If we need another injection, we can go back in on Monday as well.

After we went to the clinic today we went out to breakfast, so he was definitely feeling better. :)

I have been doing tons and tons of internet searches these past few days and even though Dr. Flaig didn't think this back pain could be related to the Casodex, I found case after case of back pain being a side effect of Casodex. So we will talk to Dr. Flaig about that when we see him on Thursday.

On a different note, Marshall's West Virginia Mountaineers lost today and my St. Louis Cardinals are still in the playoffs for the National League Championship.

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Friday, October 19, 2012

Emergency doctor visit today

I heard from Dr. Flaig early this morning and he said that the back pain Marshall was experiencing was not what he would consider a normal side effect of the Casodex.  He suggested that we see our primary care physician.

I called the clinic first this morning and they scheduled Marshall for 10:40.  When we got there and they asked him to rate the pain he was feeling, he said, "Three times the highest number."  The doctor talked to him for a while and then sent him back for x-rays of the spine.

Then he showed us the x-rays and pointed out some cancer-related issues in the spine, some black spots that showed where the cancer was, things we already knew.  However, he didn't see anything that could cause pain.  He said the spine was in perfect alignment and looked normal.  So he guessed that there is a hairline fracture in the spine that isn't visible.

Marshall didn't want to take any more oxycodone, so Dr. Mohr ordered an injection of something that he said was "like aspirin."  He said it wasn't a narcotic and therefore didn't have the side effects of a narcotic, but that it helped most people with pain.  Marshall got one of those injections today and if he needs it he can go back every day (but Sunday) for another injection up until Thursday, the 25th, which is when we go back to the University Hospital for his next treatment of Lupron and Xgeva.

We will have questions for Dr. Flaig about how we treat a possible hairline fracture and whether or not the Xgeva (bone strengthener) will help in that regard.

As I am writing this, Marshall is still in pain but is feeling better.  We're both tired.  I predict it will be an early night.

Thursday, October 18, 2012

Painful side effects of Casodex

Well, first of all, Google was nice enough to give me my blog back.  I have no idea what was going on, and I was never allowed to talk to an actual person, but the "Google robots" finally conceded that I was not perpetrating any fraudulent activity with this blog.

Now back to Marshall.  After the slight back pain on Friday from the first Casodex pill, Marshall felt pretty good on Saturday, Sunday, Monday and Tuesday.  It was looking as though the Casodex was going to be a breeze.

But yesterday he had more back pain that built up a little during the day.  He took some Tylenol and it died down.  This morning when he got up he felt better but within 30 minutes the pain returned and steadily built up all day.  By mid-afternoon, the pain was a bit more than he could take, so he took an oxycodone.  That helped for about 2-1/2 hours.  Then the pain started spreading to his joints and he could barely get up out of a chair.  He held out until 10:00PM, took another pain pill and went to bed.

He is sure that this isn't bone pain, it is more muscle and joint pain.  I did a little bit of research on the internet (and plan to do more in a little bit) and learned that this kind of pain is a side effect of Casodex in about 30% of men who take it.  So far I haven't been able to learn how long these side effects last, but I will keep looking.  He won't be able to "tough this out" much longer.  And next Thursday he gets his next Lupron (hormone therapy) injection and Xgeva (bone strengthener) injection which will have their own temporary side effects.

I have a message in to the oncologist and hope to hear from him tomorrow with some advice.

Saturday, October 13, 2012

Side effects of Casodex

Marshall's first Casodex pill was yesterday morning.  By last night he was feeling some very general low back pain.  Then the hot flashes set in with a vengeance.  And he had to get up to go to the bathroom every single hour.  So between the hot flashes and the bathroom trips, he got almost no sleep at all.  Today he was dragging.

I did a little research and all of these things are recognized non-threatening side effects of Casodex.  So we hope they tone down a little each day.  I also read that in some cases, the Casodex can cause liver damage, so there will be liver function tests in his future.

On Monday he will start taking the weekly large doses of Vitamin D2.  I just looked it up and there are no side effects.  Nice.

He was tired today but he was looking forward to the West Virginia Mountaineers vs. Texas Tech game.  Well, first of all, it wasn't broadcast in our area.  And, second, West Virginia lost badly.  Bummer.

On the other hand, my St. Louis Cardinals are kicking butt.  They have moved on to the playoffs for the National League Championship.  First game in that series is tomorrow night.

Dr. Flaig (the oncologist) posted the results of the hip x-rays on our personal hospital website today (these x-rays were taken on our way out of the hospital on Thursday) and I am happy to report that the doctor's note at the top reads: "Xrays of the legs looked OK without signs for serious bone involvement. T Flaig."  Yay!!

Thursday, October 11, 2012

One more thing on bone scan...

I forgot one thing in my report of the past two days' activities.

Dr. Flaig said that the bone scan showed a small spot on the lungs.  He said it did not concern him but that we would keep an eye on it.

Doctor visit and test results

Last night we had a great dinner with Kevin and Angie at Ruby Tuesdays.  Good food, good company.  Got back to hotel around 9:00 and relaxed.

This morning we got to the Anschutz Cancer Center at 9:30 and went straight to the lab for the blood draw.  Then we saw the doctor at 10:30.

The last few visits we've seen what it's like to be at a teaching hospital.  Last time -- in September -- we spent lots of time with a resident (Dr. Huo) and much less time with Dr. Flaig.  That was confusing because we didn't expect it so we didn't get the answers to questions we wanted (although we sent Dr. Flaig an email and he responded quickly).

So today we saw a Fellow (Dr. Sumey) and we were prepared to ask questions of both Dr. Sumey and Dr. Flaig and that part of the visit went smoothly this time.  Dr. Sumey addressed our questions and concerns for quite a while and then Dr. Flaig came in to talk about test results.  I will see if I can correctly relay what Dr. Flaig said.

He said the bone scan showed little or no change from the bone scan that was done back in April when Marshall was initially diagnosed.  That disappointed Marshall, but Dr. Flaig said he was pleased.  He said the CT scan showed slightly more activity in the hip area than previously.  And he asked how Marshall was feeling, whether there was any pain, etc.  Marshall told him that he hasn't had any pain to speak of and had a bit more energy than back in August and September, and he still had hot flashes.

So Dr. Flaig said that, first of all, in his opinion, the bone scan "trumps" the CT scan and since the bone scan showed no real change, he considered that a good thing.  And then when you take the bone scan along with the fact that Marshall has been feeling pretty good, he thought that indicated things were going along pretty good.  However, he thought Marshall should also get an x-ray today just to have one more comparison done at the same time as the other tests.  (We stopped at Radiology on our way out and Marshall had that x-ray done and we'll get that result tomorrow).

Then he told us that the PSA went up to 10.01.  That was disappointing, but Dr. Flaig said not to be disheartened.  He has added a new drug to the mix -- Casodex.  Casodex is a testosterone blocker.  Marshall will be taking a Casodex pill every day for the near future.  It is supposed to create a block that will stop testosterone from feeding the cancer.  So we will now be watching the testosterone level as well as the PSA level.  He said that after a certain period of time on Casodex, if it drives the PSA level down the way he expects, he will stop the Casodex and see how things go.  He told us about several patients who took the Casodex along with the Lupron and then stopped the Casodex when the PSA level got down to undetectable and those patients then went on to enjoy several years of "remission."  So that is our plan going forward.

Next, we talked about Marshall's dangerously low Vitamin D level.  Marshall had been taking Citracal and Dr. Flaig said Marshall should continue on that.  But he added another drug that will give a megadose of Vitamin D (50,000 Intl Units in one pill).  Marshall will take one of those every week for 12 weeks and we will measure the Vitamin D levels again.

So we left there feeling pretty good.  And Marshall's frame of mind stayed good.  He had one or two instances of the "demons" showing up.  But Marshall has a technique of forcing the demon in a box and when the demon closes the lid, Marshall moves on feeling better.

On the way home, we stopped at Harley to see if his motorcycle was ready (he had taken it in last week for its 5,000-mile tuneup and to try to get the satellite radio fixed).  The bike was ready so he got to ride it home and that was a good end to the day.  The satellite radio problem turned out to not be fixed so that will be another battleBut we are now home and all in all, it was a good day.  We go back on October 25 for his next Lupron shot and his next Xgeva shot.

Wednesday, October 10, 2012

Tests are done

We got up here today early enough to have a quick lunch and then arrive at the Radiology Department around noon.  They gave Marshall a liquid contrast to drink (for the CT scan) and they injected a contrast (for the bone scan).

The CT scan (which was of the hip area) was at 1:00.  The full body bone scan was at 2:20 and lasted about 40 minutes.  Then we checked in to our hotel.

Marshall has kept his good frame of mind all day today.  And he hasn't experienced much pain at all in quite a while, except for occasional twinges and a bad case of Restless Leg Syndrome that seems to hit every night.  And the hot flashes -- which had dropped off for a long while -- now seem to be coming back.

Tonight his nephew Kevin (and Kevin's fiance Angie) are coming by to go to dinner with us, which will be a nice diversion.

Tomorrow morning we need to be back at the hospital at 9:30 for the lab work (PSA test) and then we see the doctor at 10:30 to get all the results.

Our thanks to Dave and Cathy for watching our "kids" for us.  It is so much less stressful knowing the boys are in good hands.

Stay tuned.

Tuesday, October 9, 2012

Tomorrow is "test" day

Tomorrow morning we leave early to head up to the University Hospital for several hours worth of tests (CT, bone scan) to see where things stand in comparison to the tests done in March/April.  We will be spending the night at a nearby hotel and then Thursday morning we go in for lab work (another PSA test) and then we see the oncologist for the results of all the tests.

Marshall was in a really good frame of mind today and is going to try to maintain that outlook through the next two days!  (But Donna, we will have your number with us in case he needs to talk....)

Send good thoughts our way -- I will report back on Friday.

And here is a link to a really good article that was in the USA Today on October 1st titled "Men Have More Options In Prostate Cancer Treatments."  It tells the story of a man who is in his 23rd year of fighting advanced prostate cancer and describes all of the new and successful treatments that are available today.


Wednesday, October 3, 2012

Home Safe and Sound

Well, it was a great trip.  Marshall just got back home this evening.  He had an absolutely wonderful time riding the trike both to and from Ft Walton Beach and he had little or no pain throughout the entire trip.  We both had a wonderful time (although I could have done without the palmetto bugs -- they are huge and scary).  Here are some pictures:

Marshall and his bike had a constant flow of admirers!

Another photo of the inside of a modern gunship.

A group picture taken in front of the gunship.

Memorial service at Hurlburt AFB remembering those who did not return from Viet Nam.

The official photographer for Hurlburt AFB came to the hotel and took pictures of the motorcycle and enlarged two of them into huge posters which were presented to Marshall at the Meet-and-Greet Friday night.  These are awesome!

This is the second poster which is a collage of all of the parts of the bike.

Sunset from our balcony.

Monday, October 1, 2012

Lightning in the Mountains

The day before I got home, there was a big lightning storm and -- once again -- our wireless router was fried. So we are waiting for a new one. I will update the blog in a few days when we are "connected" again. At least it doesn't look like any other household electronics got hit...

Marshall should be home in a few days. He has had to go through a lot of rain since leaving Ft Walton Beach and he's taking it slow.

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