Good & Bad

The good part is, Don's eyesight got better every day, it is now back to normal.  That means that it's not that rare condition associated with melanoma they thought it might be and it's a reaction to the drug.

The bad part is, on Tuesday we had just arrived at our landlord's new house for a cook out when Don suddenly had to go to the bathroom.  With no warning at all, he had diarrhea but it was all blood.  So off to the hospital we went again.  His hemoglobin was fine, so he wasn't losing any blood.  His white blood count was high, showing signs of an infection.  They did a CT scan and found it was not more cancer.  They wanted to watch him for 23 hours to make sure he didn't do it again.  They didn't want to give him a colonoscopy since the colon was inflamed and it would be too easy to end up with a perforation.  His oncologist came in and could not believe all the side effects he was getting.  He agreed that he was a patient he will always remember.

The other good part, when they did the CT scan they found that the tumors on the liver had shrunk.  The problem is that so far he has been allergic to everything.  They are giving him 10 days then they will try another.  Finally, something good.

Another Mystery

When I was at the hospital with Don on Tuesday he starting asking questions like "Is it dark out?"  "Are the lights on in here?"  "Why is the TV so dark?"  He was losing his eyesight.  He described it like looking through a straw, he could see me as an outline but couldn't see my face, etc., etc.  Wednesday morning an ophthalmologist saw him thoroughly checking his eyes and couldn't find anything wrong with them.  He was sent for an MRI of the brain, (melanoma also metastasizes to the brain), luckily the MRI didn't show anything abnormal.  When I got there, his eyes were really dilated because of the eye exam yet he thought it was really dark in and out.  Dr. Weber came in and said a blood test was ordered to check this rare condition the ophthalmologist thought might be the problem.  It needs to be sent away and takes about a week.  Don has an appointment on the 23rd with the ophthalmologist for results. 

If I was hearing these series of events from someone else I would almost think they were making it up.  It is totally crazy how his body is reacting to everything.  Needless to say he is off this study too.  We don't know what the next step regarding the cancer, right now they're concentrating on his eyesight.  A home health physical therapist is coming in the morning to make sure he can function safely, should he have a cane, etc.  Next week someone from a local society for the blind will be in.  They have put him on a steroid again hoping that helps.  It's not as strong a dose or for as long a period as the previous stretch that messed up his blood sugar but he will test his sugar level, just in case.

On a good note, through all this crap there have been some pretty awesome things happen.  For example, the people we're renting the RV pad from also own a house with a huge carport in the same community that is for sale.  They have already moved to their new house.  They said that since we were going to be here in the summer heat, we could move the RV there to be out of the sun.  That will save our roof and on electricity using the AC.  They are not charging us more.  We can use the garage and they are even letting me use the laundry room.  We have a washer/dryer in the coach but it's not good for sheets and jeans, leaves them way too wrinkled.  Plus its not really big enough for blankets etc.  They were going to have us move this week-end but because of the latest developments they, along with another couple and another man, moved us this morning so that we would be all set up in our new location before Don got home.  The other couple even brought over a patio table & 4 chairs for us to use. They spend the summer in North Carolina.  We are blessed.  There are a lot of good people out there.

Here we go again!

Don started on the new clinical trial on Thursday taking his first pills late afternoon and evening.  The fatigue started setting in right away, along with diahrea and got progressively worse.  The anti diahria pills they gave him didn't work too well.  By Sunday he could barely get out of bed for anything.  I called his doctor yesterday morning and he wanted me to take him into Moffitt.  Don had all he could do to walk to the car so he got in the back of the Jeep laying on the dog's bed (a real big one) with his pillow, a bucket and a towel.  By this time he had started vomiting.  Even though he had tried to keep fluids in him, they were coming out faster than they could go in so he was very dehydrated.  Not only have his liver function numbers crept up so have his kidney function numbers.  The doctor figured it must be from the trial drug, the XL888 I mentioned in my prior post because these side effects have never been reported on the other drug.  But then, Don has reacted differently to everything they have put in his body.  Again, he has the doctors stumped. 


They have kept him overnight and will or have given him a shot of steroids.  I don't know if he will be on prednisone again, he was hoping not since his face and belly were almost back to normal.  I will be leaving shortly to go up there.  Again, thank God we are doing this here and not in Boston, we would have had to move there.


Many of you have asked how I'm doing.  I'm sure you all know it can be an emotional roller coaster ride.  I pray mostly for God to give me the strength to accept whatever he has in store for me.  I have been able stay strong, but every once in a while I have a very sad day.  I find if I just allow myself to feel that sadness rather than stuffing it, it subsides fairly quickly and my strength comes back.  This is one of those days, I guess you could call it discouraged.  By tonight I'll be fine.


Thank you all again for your prayers and good energy..

Anxiously Awaited Day

So here we are, April 2, a visit to the doctor's to get the results of all of yesterday's tests.  His liver function numbers were back to normal, his blood sugar is just about back too.  The MRI of the brain does not show any tumors but there was a spot that showed slowed blood flow.  Dr. Weber need to check that out with a neurologist.  It's usually a sign of a small stroke, but he didn't have one so it could just be age.  The main point is, no tumors.


The CT scan of the lungs shows that some tumors have stayed the same and some have shrunk.  The main purpose of the infusions was to stop the growth of tumors.  However, the tumors on the liver have grown.  One went from 7.1 cm to 8.1 cm and the other went from 4.6 cm to 6.1 cm, not good.  That leaves him with 3 options:


1.  He can do nothing for a month and scan them again to see if they have shrunk.  These infusions have been known to work slowly.  We don't like the idea of doing nothing for a month and neither did the doctor.


2.  Go into another clinical trial taking 2 different drugs in pill form and see where he's at in 8 weeks.


3.  Have the traditional melanoma treatment.


If he opts for the traditional treatment and that fails he cannot go for the clinical trial, but if he goes for the clinical trial and that does not work, he can go to the traditional treatment.  That is what Don chose, that gives him a Plan B and a Plan C.  The doctor agreed.  As soon as he gets more testing, and EKG, a biopsy and sees a dermatologist, he can start the medication.  He will be tested every week for 2 weeks after starting the medication, than every 2 weeks until he reaches week 8.  Then, depending how the drugs are working he will be tested every 4 weeks from week 8 to week 36, then it could go to every 3 months.


The drugs are Vemurafenib which is FDA approved and is currently being used by itself for metastatic melanoma.  The second is XL888, which is not FDA approved yet, this is why they are doing a clinical trial.  What this drug does is prevent the cancer from being resistant to the first drug.


Here's hoping.  Metastatic melanoma grows very fast, and if it wasn't for the first clinical trial, it would be far more advanced.