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.

Blood Sugar Comming Down

When he started the prednisone he was taking 10 per day, decreasing by one pill every 5 days.  He is now at 2 pills a day and his blood sugar is coming down nicely.  Instead of taking the insulin 5 times a day, he is down to once or twice a day.  Maybe he should have a few more but we are having trouble with Medicare B renewing the test strips before the 21st.  I have been on the phone with the  pharmacy, Medicare & the doctor's office.  The doctor has talked to and faxed Medicare a bunch of medical notes but they won't budge.  Consequently he's not testing 4 times a day like he's supposed to, making the strips last til the 21st.  It's a good thing he's not in the 3-4 hundreds like he was.  I want to call them again tomorrow, one last ditch effort.

We're counting the days to April 2 when we find out how his few treatments worked.

Another Bump in the Road

Two weeks ago the doctor's office had him make an appointment with his Primary Care Physician because his blood sugar was going up, which is a side effect of prednisone.  Since he is in Maine, they made one with a Doctor of Internal Medicine right there at Moffitt.  We were there Thursday the 20th.  Blood sugar levels should be about 100, his was over 500.  I checked another blood test he had in December taken after being on prednisone and it was only 93.  So now he has to check his sugar level 4 times a day, before every meal and at bed time and give himself a shot of insulin at a dose based on his level.  This is a fast acting insulin.  At bed time he also has to give himself a shot of the slow acting insulin, so that is 5 shots a day.  Thank God it is so much easier now, no long syringe and bottles of insulin.  It's in a pen with a dial to measure your dose and the needle is only 6mm long.  The doctor told us today that he will need less insulin as his dosage of prednisone goes down.  He has 30 days left on it, after which his blood sugar should go back to normal.

It's this big vicious circle, they put you on a drug then you have to go on another to get rid of the side effects of the first, then another to get rid of the side effects of the second, and on and on and on.  It's a mess but will be well worth it if it takes care or slows down the cancer.

Two Blood Draws a Week

Not much to report, liver numbers coming down, being tested twice a week until liver is back to normal and will keep going into Dr.Weber's office every 2 weeks as scheduled but not get an infusion.  He has been able to get only 3 of the 10 infusions, it raises heck with his liver.  There is a plan B if the final results are not good, but we won't know what that is until we get the final results the beginning of April.  Wish we had more to report medically.  He is feeling lots better once he got back on the prednisone, a 50 day cycle.  He even played golf yesterday, about 11 holes.  Great improvement.

Much Better

Just brought Don home after 2 nights in the hospital.  His liver enzymes are going down to normal so he is feeling MUCH better.  He will be on prednisone for another 50 days which will bring him to the end of this 12 week cycle of the trial.  That means no more infusions.  The doctor said if these infusions are effecting the liver so adversely, think of what it's probably doing to the cancer.  I hope he's right.  His spirits are up and he's back to being very positive.  He can't wait to get back on the golf course.  Thanks for all your prayers and positive energy.

Three Steps Back

My last post was on the 27th, the next day, Tuesday the 29th, he had a pretty good day.  We sat outside visiting with friends most of the day.  In late afternoon he had to excuse himself to go lay down, he suddenly felt very tired.  Later that night he was freezing, I took his temp and it was 102.1.  He wanted to wait & keep an eye on it before calling the doctor.  By 11 p.m. it was down to 99.8.  The next morning it went to 100.2 so we called Moffitt.  Since there were no emergency beds available they had us go to Lakeland Regional Hospital to get evaluated and have the doctor there report back to Dr. Weber.  They did not find anything, no infection, lungs were OK, liver enzymes normal, kidneys OK, CT scan showed no abnormalities other than 2 spots on his liver, which we knew about.  Dr. Weber knew that a temp is a side effect of his latest infusion but since he had just had a liver biopsy he wanted to make sure there was no infection.

He has had a low grade temp since, his coughing is getting worse but nothing comes up, he has been feeling terrible and has had a very dry mouth and a terrible taste in his mouth.  He has been drinking lots of water, even during the night, but his urine was a dark orange this morning.  Dr. Weber had him go to the emergency room at Moffit this morning.  He has thrush, yeast infection in his mouth, and his liver enzymes are very high.  They have admitted him and given him a strong dose of steroids in his IV.  I seriously doubt that he will get his infusion on Wednesday and I don't know where they are going to go from here.

Doing Much Better

So he slept 37 hours of his first 39 hours home after his infusion.  He was in bed most of the day yesterday but did not sleep all the time, just didn't feel good.  Today he has been up most of the day and has only slept a little.  He has improved a lot each day.  Next infusion is on the 5th, hope he doesn't react to that one more than he did this one.

Long Day

Up at 5:15 a.m. and leave at 6:00 to make it for a 7:15 appointment for blood work on Friday.  Then for a liver biopsy.  That didn't take that long but he had to lay there for 3 hours after to make sure there was no bleeding.  Then off to see the physician's assistant, the doctor was out, for the results of the morning blood work and a check-up.  His liver and kidney functions were all normal, waiting to see the results of the thyroid, adrenal & pituitary.  That takes several days.  He is still sleepy most of the time, sleeps a lot.  But he got the green light for the infusion.  It was scheduled for 2:30 but didn't get it until 4:00.  Since he had been over 6 weeks without treatment, the doctor needed to write a new order. (couldn't take last 2 of the first round because of high liver numbers and couldn't take the first of the second round since he was on prednisone).  We never got home until 6:30.  He went straight to bed and it is now 4:00 p.m. on Saturday and he has slept most of time.  Hope tomorrow is better.

We met someone in the waiting room who is at the end of the same trial (2 years) and he never had any side effects.  Don has had many.  Also in re-reading the information we were given on our first visit, about 80% of the 242 having completed the study experienced a side effect from the first drug he received and only 10-15% from the drug he just started.  Here's hoping.



Change in Plans

Don got a call from Moffit yesterday with a change in plans.  He was supposed to get an infusion on Wednesday, but since the spots on the liver did not improve, he needs another biopsy of the liver.  He will have that done on Friday, then have his infusion.  It's going to be a long day.   Thank God the lady across the street and I walk each other's dogs when needed.  She has a miniature Schnauzer and the first time Bruno pooped while she walked him she said "Now I know why I have a small dog".  The arrangement is working out real well.

He is finally off the prednisone which really made him balloon out.  He is also very short of breath.  Don't know if that is a result of getting off the prednisone, even though it was done slowly, the extra weight or whatever, but I want him to call them on Monday since they want to hear about every little change.  Will let you know how Friday goes.

Test Results

We got results from the CT scans and MRI.  Some of the tumors have gotten smaller and some have gotten bigger and another has showed up on the liver.  So he has 5 on the lungs and 2 on the liver, but it has not gone to the bones or brain.  The doctor said that is all good.  The 2 infusions he got sometimes take several weeks to start working.  Basically he said that if there is not a big increase in the tumors, it's good.  The company conducting the trial has a limit of 25%.  In other words, if the condition worsens by more than 25%, the patient is out of the trial.  Between the "better" and "worse" I'm not sure where his percentage is, but he's way within the limits.  He did not get an infusion today since he's still on steroids (prednisone) so he will go to the 2nd infusion in 2 weeks and get only 5 total.  The trial is very strict and everyone in it has to stay right on schedule.  There have been about 150 so far and it looks like the sequence he is in is working better, the infusions of ipilimumab first followed by infusions of nivolumab second.  So it looks like we're good.

Stray Dog

Remember the stray dog Bruno befriended?  He was finally caught, brought to a no-kill shelter and neutered.  His collar had started growing into his skin so his skin was ulcerated and he had a cut on his ear.  They neutered him, worked with him, got him back to health and a gentleman who lives here alone adopted him.  He's a really nice dog, walks well on a leash, lets people pet him, and still gets to play with Bruno.  Awesome save.




Temperatures barely got to 60 yesterday, 30 this morning with a high of 46.  Just a tad bit chilly for Florida.

Took a Week Off

Since Don had no blood tests to go for, phase 2 doesn't start til Jan. 7 and he's doing fine on the prednisone, we decided to go to Titusville for a week.  The same place he workcamped last winter & the winter before.  We got to spend some time with our old friends Paul & Joyce which was great.  Other friends, Chuck & Kathy had just gotten back to Titusville after spending time with family over the holidays, so we got to enjoy them for an evening of dinner & cribbage.  We were not too far from New Smyrna Beach so we visited with Don's 93 year old Aunt Arleen.  We also spent some time with my 92 year old Uncle Chick in Melbourne along with my cousin Beth & husband Bill.  It's always nice to spend time with friends and family.  It gives us strength to face whatever is in store for us in the next 3 months of phase 2 of his treatment.  Tuesday is testing and Wednesday we see the doctor and get the first of 6 infusions.  Anxious to see what the results of the tests will be but also a little nervous about it.  Again, we want to thank you all for your support and words of encouragement.

 



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!!!