All is Good

Yesterday's blood tests were good, levels are where they should be.  He gets one more on Tuesday just to be sure they remain that way.  That prednisone works wonders.  Next is January 7 when he gets the PT scans and MRI's, etc. and finds out if phase 1 worked at all.  Then the next day he sees the doctor and gets the first infusion of phase 2.  He will get 6 of those, 2 weeks apart, we hope.  The best part of yesterday is the couple we met in the waiting room.  He had melanoma in the lungs and liver, note I said "had".  He went through a clinical trial with Dr. Weber and has been cancer free for 2 years.  He still gets maintenance infusions but they're getting so they are pretty far apart.  There is hope, lots of it.

Blood Work, Blood Work and More Blood Work

Friday's blood work showed high liver numbers....still, so they started him on prednisone again, 100 mg for 5 days, 90 mg for 5 days, etc.  Total of 40 days by the time he is weaned off.  Within a day he was not tired all the time, breathing got better and almost no coughing.  Had more blood work done this morning, just got the results, 2 numbers are down but one is up.  Again, they have never seen anything like it.  More blood work Wednesday along with a visit with the doctor.  They are really baffled.

 

He's golfing tomorrow, yippy!  He's excited about that one.

Got Doctor Baffled

Like I mentioned in the previous post, the doctor thought that his tiredness, lack of energy and labored breathing was due to the medication effecting his pituitary and/or thyroid glands but the tests came out fine.  Then he thought maybe low testosterone, but that was fine.  They did not give him his infusion today, the doctor didn't want to give him more of the same thing until he knew exactly what was going on plus his liver function numbers were up again.  They did a chest x-ray and that was fine.  I was really relieved about that one since he coughs and is short of breath.  He is now questioning if there is some kind of infection, kidney or liver (hepatitis) going on, so they did a urine & a couple of blood cultures.  We don't have the results of that yet.

 

Had things gone as expected he would not have to go back to Moffitt until January 7th, but he needs more blood work on Friday then a doctor's visit on Wednesday.  The doctor said he has not seen this reaction in this study so he is going to watch him really close.  So we are just taking it one day at a time,  I want to thank you all for your prayers and good wishes.

More Side Effects

Had to visit the doctor again yesterday.  Don has been extremely tired, sleeps at least 18 hours a day.  What really concerned me was that his breathing is becoming labored.  Knowing how fast melanoma travels, I could picture all of these new tumors in his lungs, especially since he had to skip the third infusion.  Since they want him to call for every little thing, he called on Wednesday.  He told them he was playing golf on Thursday, they told him to keep them posted.  On Friday he couldn't even get out of his own way, much less play golf so he called the hospital.  When the doctor heard he couldn't play golf he said "get him in here right away".  So we went in on Friday and had blood work done.  His rash is coming back but not severe.  This tiredness is another classic side effect since the drugs in the infusion sometimes effects the pituitary and/or thyroid gland.  We are now waiting for the results of the blood tests.  If these glands are being effected it would make him very tired and they can give him medication for it.  I was quite relieved.

 

I mentioned before that the drugs he gets don't kill the cancer, they boost the immune system so his body can kill the cancer.  What I don't believe I mentioned is that this combination of drugs is made especially for him.  They originally did many, many blood tests and some DNA testing to come up with the right combination for him.

 

The owner or founder of the restaurant "Outback" just donated $5 million to Moffitt Cancer Center for melanoma research.  You bet we'll be eating there more often.

Good Numbers

Had our visit with Dr. Weber this morning, his liver function numbers are almost back to normal.  The rash is gone, just a little discoloration of the skin and a little bit of peeling.  He's feeling great, back to being foolish and playing golf tomorrow.  He doesn't have to go back to Moffitt again for 3 weeks when he gets his last infusion of this medication, unless there is any slightest change.  Yippie!!!

Lots Better

Saw the doctor today.  The prednisone started working with the first dose.  Rash is still spreading but its not as intense as it was.  The itching is just about gone without having to take the anti-itch medication, hence he's awake.  Unfortunately the prednisone is keeping him awake most of the night.  He will still go for his appointment next Wednesday, get the blood tests but no infusion, just get his rash checked.  The doctor said they had never seen such a bad rash reaction but it didn't by any means mean it wasn't working.  We won't know until his CT scan which isn't until January 7.

Had to Re-visit Doctor

Don's rash got REALLY bad over the week-end.  He slept most of the time from his anti-itch meds.  The doctor wants him to call with every little change, he was going to wait until he saw him Wednesday but decided he'd better call.  Good thing.  The doctor had him go in, they thought they might be admitting him.  On Wednesday the doctor said his rash was a level 2, now its a level 3.  They did another blood test, his liver function numbers have gone up some more.  He put him on prednisone, said they had never seen a rash that was that bad and they would skip his 3rd infusion that was due next week.  They also said that his reaction to the infusion was probably the reason his liver function numbers had gone up and that the prednisone should help both.  He goes back on Wednesday for more blood work and a look at his rash.  He might not be able to get his 4th infusion.  My first question was whether that meant he was out of the trial.  They said he would not be out, they would give him the 2nd part of the treatment (the 6 infusions 2 weeks apart of the other medication).  I don't know if it would start as planned or if they would start it earlier.  We take it one day at a time at this point.

Side Effect

Don was tested yesterday for liver function.  The numbers are worse than they were last Wednesday.  They will test again next Wednesday, hopefully it will go down enough by the 20th so he can get his next infusion.  He has also started having one of the 2 most common side effects, a rash and itching.  It started at his waist but now it's all over.  The doctor told him to take Bedadryl and apply cortisone cream.  The Benadryl wasn't working well to he prescribed something stronger.  The only problem is it makes him very sleepy and he sleeps a lot.  Hopefully this won't last too long. 

Big Cat Rescue

We went to visit the Big Cat Rescue in Tampa.  Most of the big cats they have are cats that people tried to have as pets, some are retired circus cats.  Some didn't even know they could climb, they had to be taught.

 

Click on these so you can really see the cats.  Here are 2 cats snuggled on their perch.

 

A tiger was found in a person's basement when he was arrested for dealing drugs.

 

All of the cats have a cave type house in their area. 
Works really great for shelter in bad storms.  They look like small areas but they're all a series of rooms.  They have lots of place to roam and hide if that's what they want.  So this lion was laying there, the group we were in stayed there for a while.  Suddenly the lion stood up and went to his cave, see it at the top right.

 

 

Then he came out with this white tigress.  It was almost like he went in there and said "Come on, we've got company."

 

 

 

They were rescued by someone who was trying to breed a white liger, yes, that's not a type, a liger.  The facility is amazed at how well they get along, being from 2 different continents.

 

Isn't he majestic?  I didn't realize this, but if they neuter him he will lose his main due to the lack of testosterone.  So they gave him a vasectomy.

Isn't she beautiful?



 

This is a serval, really pretty, they had lots of these.

 

 

 

 

This is a black leopard, you can see the spots if you look closely.



 

They rescued lots of cats from fur farms.  They used just the belly fur from these cats to make coats because it's so soft and is easy to dye.  It takes 20 cats to make one coat.

 

I liked this sign. 

 One of the many things that impressed me about this place is that you could not smell anything, you would never know they had so many cats.

Second Treatment

Before every infusion they do a bunch of blood work.  His liver function levels were a bit high so the oncologist checked the protocol to see if he could postpone the treatment another week.  That couldn't be done so they gave him his treatment today but he has to go next Wednesday for another liver function test to see if he can remain in this clinical study or not.  Another hurdle.

 

On the good side, he, I should say I, found some golfing buddies and he's playing tomorrow.  People are starting to come in for the winter so hopefully he can do more of that.

Bruno's New Friend

 

There has been a stray beagle/hound here since we got here.  He started off being very scared of everything & everybody.  When we went for our walk after dinner (still light down here then), we would see him hiding in a gully or behind a tree.  The minute Bruno went towards him, he would run away.  But then we'd look back and there he'd be following us at a distance.  We noticed he was wearing a collar, but there was a big hole on the top of it like the metal piece that had the piece to hook a leash was pulled right off.  Almost like he had been tied and pulled so hard to get loose that the piece pulled right out of his collar.  As time went by he would follow us a little closer until he & Bruno finally started playing a bit, but at a distance.  Now he walks next to us.  Yesterday when Bruno went out to pee, guess who came running from down the street.  Bruno wasn't on his leach so we weren't up close, so the stray dog we call Buddy didn't feel threatened so they went through the sniffing introductions.

 

 

My turn, your turn.

 

They ran & played.  Bruno even came back in the coach to get his pillow to share.

 

 

There are people here who want him caught, but there's a handful of us who are concerned about having a dog catcher catch him, will he go to a shelter who kill their dogs after a week?  He's getting so he will take a treat out of our hand but runs real fast so we can't catch him with a rope that's been looped at the end.  You can tell he's a really nice dog.

  

 

So when Don went out with Bruno this morning for his morning duties (Bruno's, not Don's), guess who was waiting for him.

Looking for Swans

 

In our travels we have come across towns that have statues of a certain animal painted in many different ways.  Our first encounter was in March 2010 in Cherokee, N.C.  We went to the Chamber of Commerce to find out what they were all about.  Different organizations had been commissioned to paint a bear and they were to be placed at different places throughout the city.  Some were still being painted, but after a year they were to be auctioned off.  We found several bears.

 

 

Then in May 2012 in Saratoga, N.Y. we found horses.

 

 

 

That same week we found moose in Bennington, VT.  These had already been auctioned off so they were a little harder to find.  We have a friend we were visiting there who was able to help us.

 

 

In April of this year we found bears in New Bern, N.C., some were standing and some on all fours.  They also had their fire hydrants painted in interesting ways.  We saw other animals in different places but I couldn't easily find pictures.  I remember rams in Montana.

While exploring Lakeland, FL we saw swans, some with their wings up,



 

 

And some with their wings down.

 

 

Again we checked with the Chamber of Commerce and they said that they originally had 62 around the lake in the center of town but they had been auctioned off and were now scattered.  We found several.

 

 

 

We also found butterflies.  Many establishments had both the swan and the butterfly.  Some were painted.

 

 

This one looks more like it's sculptured with glass in it.

 

This one was a mosaic.  It was difficult to take a good picture, the glass sparked so much.  Some of the glass pieces were actually mirror pieces.

You can click on any of these pictures to enlarge it.

All Is Good

Wednesday was another full day.  I stayed home with the dog but Don went in for 7:45, had that test where they harvest some white blood cells to freeze and compare to the one they will take in 6 months.  That took 2 hours.  Then they took more blood for more tests.  He had his first infusion which takes 1 1/2 hours.  It was 3:00 before he got done.  He will be getting this medication every 3 weeks, 4 times.  In December he will be getting more MRI's and CT scans to see if the cancer is still growing, melanoma grows very fast.  Then in January he will get another medication through a 1 hour infusion every 2 weeks 6 times.  It has been 2 days now and he has not experienced any side effects.  They are having him watch for and report anything out of the ordinary, especially diarrhea, rash & extreme fatigue.

When his little IV bag emptied the nurse squeezed everything out.  When Don asked what she was doing she said "At $28,000 a bag, I want to make sure you get every bit of this."  Another reason  we're glad he's in a clinical trial.

Onother Day of Testing

Loads of blood tests, cardiogram, and a biopsy of the liver, busy day.  They got 5 samples.  Left home at 7:00 a.m. and never got home until 4:00 p.m.  Our friends, Paul & Joyce and their dog Casey, who are in Tittusville, an hour and a half away, came to let Bruno out and stay with him for a while.  Awesome friends, we have been lucky with friends.  Bill & Nancy babysat Bruno while we were in Maine and going to Boston, and Larry & Luci and their dogs Daizy and Patches babysat him several times too.  Everybody loves Bruno.

Only one test left, the one where they harvest white blood cells to see where his immune system is.  This will be a base line.  This will be done next Wednesday, it will take a couple of hours.  They take blood out of one arm, have it piped into a machine that takes the white blood cells out, then the blood goes back into the other arm.  I believe his first infusion will be the same day.

Hoping for the weather to cool down, it gets really hot in my "woman cave", can't wait to get in there and scrapbook some more.

More Good News

The doctor's office called today and scheduled him for more blood work and his biopsy on Thursday, this will probably take all day.  It was the Clinical Study Coordinator who called and she said he would probably start his treatment next week, said he wouldn't have to wait the 3-4 week we originally thought.  That is awesome.  Again, thanks for all your support.

I have been able to spend some time in my "woman cave" doing some scrapbooking, that has also been awesome.  So glad we brought some of my "stuff".

Good News

Dr. Weber finally called at 8 p.m. from the Austin, Texas airport.  He had a conference there.  The MRI of the brain showed nothing (hehehe), seriously, no growths there.  The CT scan  showed that there was growth on the others but not so much that he needs treatment "right now".  They are going to schedule him to have a biopsy then he will start treatment as soon as there is an opening, 3 weeks or so.  That is the clinical trial we were hoping he could get into, the one I described in my last post.  All is good, and thanks for all your support.

Our First Meeting With Dr.Weber

Four and a half years ago when Don was first diagnosed with melanoma and we were told that it was deep and they were concerned that it might travel somewhere else through the blood system, I did some research on line.  I found that when melanoma travels it usually goes to the lungs, its called Metastatic Melanoma.  It pretty much said that there really was no treatment for it.  It scared the dickens out of me.  As a matter of fact, I never showed him the article.  When the oncologist told him he had spots on his lung and that it might be melanoma, his surgeon said that 2 years ago they would have told him to enjoy the time he had because not much could be done about it but a lot had been done in the past year with wonderful results.  As a matter of fact one drug had just gotten approved by FDA. 

Well Metastatic Melanoma is exactly what he has.  He will be in a clinical trial but there won't be an opening for 3-4 weeks.  Since this tumor on his liver seemed to have grown quite fast, the first thing they're doing is doing a CT scan on Wednesday to see how much it has grown since his last scan.  If it's growing too rapidly he can't wait 3-4 weeks, therefore he will have to go into another study until the tumor shrinks.

The study we're hoping for will be treating the immune system.  There is no placebo used.  What they are studying is the results of using a combination of 2 drugs.  One group will get an infusion of drug A every 2 weeks for 6 doses then an infusion of drug B every 3 weeks for 4 doses.  The other group will get drugs A & B in reverse order.  This will take 6 months.  The side effects are minimal and they will watch him like a hawk.  He will have to go through testing at several intervals to see how his body is reacting.  One is taking white blood cells to see how his immune system is reacting.  They will even do a genetic test to see if he is likely to respond well or not.

I'll let you know how the CT scan goes, he has to call Dr.Weber on Thursday for the results.

Our New Temporary Home

This is love bug season, check out the windshield on the coach and the front of the jeep.  They are all over the place.

 

 

On Monday we moved into our new home.  It's a nice community, very quiet right now, but I'm sure it will liven up in the next few months.  It's a nice corner lot so we have lots of space, big lawn next to us.  There is also the storage shed with a toilet, sink, shower & place for a washer & dryer.  We won't need to get a washer/dryer since we have one in the coach.

 

There was a trash bag next to a water faucet on the edge of the lawn to the left.  When Don backed up the trailer, being the good tractor trailer driver that he is, he never touched the faucet but went over the trash bag.  No big deal, right?  Wrong, it was marking an underground valve, water started flowing all over the place.  We had to call the owners in PA who then called a friend here and he had to dig down and shut the thing off (also removed the faucet, already had 2 others on the other side).

 

We finally did get settled in.

 

Look at all the space. 

 

And I have my space and "stuff" in the trailer for my crafting.  Those cupboards are full also.  I can now quilt AND do scrapbooking.  Ready for what could be a long winter.  But at least we'll be warm.

 

 

 

 

Temporarily Sidetracked

Our plan this year was to leave after my family reunion in September, head west for the Rose Bowl Parade in Pasadena, CA., stay til spring and visit the northwest.  Unfortunately our plans were changed.  In July of 2009 Don had some malignant melanoma removed from his back.  He was treated at Dana Farber Cancer Institute in Boston.  Since the growth was so deep, they watched him carefully, getting CT and PET scans every 6 months.  Last December they found 2 small spots on his lung which were too small to biopsy.  Three months later, one had doubled in size.  On June 24th they went in to remove the bigger spot (the smaller one was still too small to even put a needle in it).  Unfortunately the spot they removed was melanoma.  On July 28, after fully healing from the surgery, they did another CT scan and found 2 more spots on his lung and one on his liver.  His first question was what would happen if he chose not to go for treatment.  The doctor said he would probably have a year.  Consequently, he has decided to go to the Muffitt Cancer Institute in Tampa, Florida to be part of a clinical trial.  When talking with the doctor in Tampa he asked when he should go to Tampa.  The doctor's reply was "If I had that type of cancer, I'd be down here as soon as possible."  It took us 3 days to pack up and head to Tampa.

They are making lots of headway with treatment for melanoma.  No radiation or chemo.  They now treat the immune system.  After MANY phone calls, he finally got his medical records transferred to Tampa.  His first appointment will be Friday the 20th.

We are at a campground in Polk City that someone recommended to us.  I was looking for a workcamper job (where you work 20 hrs. in exchange for a campsite).  I found one but when we checked out the campground we decided we really didn't want to live there.  We did some exploring and ended up subletting an RV pad at a very nice RV community, Mount Olive Shores, we move there on Monday, will send pictures but in the meantime, you can check the link.  We've already made the trip from there to the hospital.  It takes an hour but is very easy traveling.

Kentucky, Horse Country

May 5, 2012, never finished this one.  Here we are entering Kentucky, another state to add to our "states visited" list, that leaves us only 11.

I loved the roads we traveled.    Forget the major highways.

This is where we stayed in horse country.

This is one of the horse barns we visited, beautiful, and you couldn't even smell horse "dodo".

The horses were all taken very good care of.  This was a fairly new Mama.

And here is her baby.  What a cutie.

Each stall led to a large paddock, note the narrow strip between the 2.  This was a breeding farm, so they have to keep the horses apart.

Our tour bus, we went to 3 horse farms and they were all exceptionally clean.  Many of the studs were winning race horses so the stud fees were humungus.

This wasn't a breeding farm, just one of the many farms in the area.  Horses are such majestic animals.