My Last Post

On August 30th Don no longer wanted to take his anti-nausea meds or morphine orally.  He also wanted something to help him sleep.  Since that only left getting shots, they had to transfer him to The Hospice House.  He thought he would be gone in a couple of days.  It was horrific to watch him go through what he did.  They were wonderful and kept him as comfortable as possible.  Bruno and I were able to stay there around the clock.  Up until the last 3 days when I did have to leave I made sure someone was there in case the nurse needed to be called.  He passed away at 8:20 p.m. on Wednesday Sept. 10th.  His last few days were comfortable, he didn't wake up even when they bathed him.  It's a relief that he is no longer suffering but I will miss dearly.  I'm so thankful that we had the years we did have.

This will be my last post since this was OUR blog and I'm finding it too difficult to be on it.  If anyone wants to get in touch with me my e-mail address is wyselb@gmail.com.  Here is a link to his obituary.

http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Donald-Wyse&lc=1643&pid=172440796&mid=6118483&cid=em.legacy.dm.1643.6118483&eid=sp_sciobitposted

Hospice

We got the results of the MRI and CT scans from Boston.  The MRI determined that there is no melanoma in the brain, it was definitely a stroke.  The CT scan showed that the 3 tumors in the liver had shrunk considerably.  He had been down to 1 cancer pill a day, of his own choice.  He was so sick of feeling so terrible that he stopped taking it altogether.  By Wednesday the 20th, he could barely get out of bed but didn't want to go to the ER.  I convinced him to let me call the doctor to see if he could see him.  My sister helped me load him in the back of the Jeep so I could drive him there and help me put him in a wheel chair to get to the Dr.'s office.  He was dehydrated and his vital signs were not so good so they wheeled him right to the ER who in turn admitted him into the hospital.  They did another CT scan on Friday the 22nd.  The tumors multiplied and grew so much that the smallest tumor was larger than the largest one the prior week.  The liver is enlarged and pushing on the stomach which is distended since it can't drain.  They finally found a nausea medication that is working.  The oncologist said since he does not want chemo he suggest hospice.  I asked him for a time frame, he said his best guess is a month maybe less.  Don chose to stay at home so they brought him home by ambulance yesterday.  A home health aide comes in every day for an hour and a nurse will be coming in 3 times a week, more as needed.  They will also send a chaplin and a social worker for both of us.  A very dear friend, Joyce Casavant, is spending the week with me, her husband is bringing up their RV next Wednesday and staying indefinitely.  

He seems to be at peace.  It will be lots of work taking care of him but very much worth it.

First Dana Farber Appointment

On Wednesday we went to Dana Farber Cancer Institute in Boston.  I drove as far as Portsmouth, N.H. and his son met us there and drove us into Boston.  He came to the appointments with us which was wonderful, he got to see things first hand and it took some of the pressure off of me, not to mention Don's appreciation for having him there.

First we saw the neurologist.  We all liked him, it was especially good that Don liked him.  He ran a few tests on him and told him that the stroke had caused "left side neglect".  He explained how important it was that he not drive.  His peripheral vision is OK if there is something on the right OR on the left, but if there is something on both sides only the right side will register in his brain.  Don asked if he could compensate like a person who is blind in one eye and the doctor said that he could not since his eye does see it, it just does not register.  So if he were driving and there was a pedestrian, bicycle, car, whatever, coming on both sides, he would not be aware of the one on the left.  The Dr. also explained that if he drives anyway, has an accident with someone who is quick to sue, all they have to do is check his medical record and find that he should not be driving and we can lose everything we've got, even in a minor fender bender.  He needs to be tested by a company that does simulation driving testing and pass before he can drive.

Don then went for blood work followed with a visit to Dr. Hodi, the melanoma oncologist he has been working with for the 4 years prior to going to Moffitt Cancer Center.  Unfortunately he had not gotten the records from Moffitt yet, so he called Dr. Weber personally to get enough information to be able to talk about his condition.  He suggested that Don have an appointment with a tem of doctors who can tell him what clinical trials are out there that he would qualified for.  Don explained that Dr.Weber had suggested not trying anymore trials since they have to follow protocol and give the same dosage to everyone.  Don does not seem to be able to tolerate full dosage of anything so it would probably just make him sicker and put him in the hospital again.  The other option is chemo, but he definitely does not want that.

We went back to Boston for an MRI of the brain and a CT Scan.  The neurologist said he would call Don the first of the week to tell him the results.  He was not convinced that it was not melanoma that caused the stroke.  He said once the blood from the hemorrhage dissipates, sometimes they will find a melanoma lesion.   We see Dr, Hodi on the 26th when we get the results of the CT Scan and how the tumors have changed.  Don seems to be getting weaker every day, but he barely eats, he has gone from his regular weight of 215-220 to over 230 when he was on prednisone and now to 185.  The personality changes from the stroke are still there, every now and then I get a glimpse of the Don I know.

We're Home

We got here Friday night, we are at Range Pond Campground in Poland, Maine.  When I turn on the cold water faucet I actually get cold water.  I can sleep with the windows open and get some cool air, real air.  I need a blanket to sleep, I can sit outside without all that humidity, the list goes on.  I guess I'm just a true Mainer.  Bruno is enjoying being outside too.  I saw my granddaughters Friday night for a quick hug and picked them up at noon yesterday for the afternoon.  It was awesome.

We had some visitors yesterday, which was really good for Don.  We had someone come visit today but he did not want to get out of bed, this is one of his very angry days.  I tread very lightly on those days, and on real bad days at least I have somewhere close to run away to.

Finally, Some Good News

Don went for his MRI and CT Scans yesterday.  This morning he saw the oncologist, Dr. Weber.  He said that the scans show that the tumors on his liver have shrunk, even though he hasn't been on cancer drugs since the stroke a month ago.  I had imagined growth.  Needless to say, they put him back on those meds.  He explained what happens with a hemorrhagic stroke and how the healing process causes these short circuits, which is why its not safe to drive.  He said it would probably take 2 weeks to heal.  He wants to see him in 4 weeks but said if we wanted to go back to Maine, he would set it up with the doctor he had back at Dana Farber Cancer Hospital in Boston, Dr. Hodi.

Then he had an appointment with a neurologist who performed a few tests and said he should go 3 weeks before driving.  He wants another MRI and visit also in 4 weeks, but we can also do that at Dana Farber.  Bottom line, Don's 2 friends will be here Wednesday the 23rd, so we should be back in Maine sometime over the week-end.

He's Home

Don came home today.  Now I have to be sure he stays safe.  11 days until his CT Scan and MRI, and a visit to the oncologist and neurologist the following day.  I Pray that it goes by fast.

Improving

I'm not sure what to report except that physically he is improving every day.  Unfortunately it has effected his personality.  I did find out that right strokes (effecting left side of body) usually do cause personality changes, left ones usually cause speech issues which he does not have.  I also found out that right sided strokes are a lot less common than the left.


I found a support group which was very helpful, but they meet only once a month.  Hopefully we will be home by their next meeting.  I consider myself a strong person, but I'm finding this is very difficult to do by myself.  Keep the prayers and good energy coming.

Therapies Going Well

Don is responding very well to Physical, Occupational and Speech Therapy.  I have not seen a social worker yet, so on Monday I will find someone who can give me an idea as to how long they think it will take before he is discharged.  On July 17 he is scheduled for an MRI at Moffitt, and on the 18th he will have blood work, see a neurologist and his oncologist, Dr. Weber.  Hopefully, shortly after that, we can go home.  I think he will get better faster if he has friends and family around.  Like his son says, we are on an island, alone with no support.  We have made wonderful friends here who will do just about anything to help, but it's not like old friends.

I have someone lined up to come pick up the coach and drive us home.  I have a rehab facility lined up to admit him if he still needs it, and I have a campground to stay at for the remainder of the summer.

On Tuesday I went to the hospital to report the neurologist I had an issue with.  I saw a patient advocate in the Risk Management Dept.  She was appalled and suggested I report it to the Watson Clinic, the doctors' organization he works for.  I reported it to a patient advocate there and they agreed it was totally uncalled for and it would definitely go to the board.

In Rehab Facility

Don was admitted into the rehab unit yesterday.  I picked one that allows dogs to visit.  When he was discharged from the hospital, he needed 2 people to move him.  He had his evaluation this morning before I got there.  I spoke with the physical therapist and he said he needed just one assist.  When I got to his room he was sitting up in a chair.  He was able to transfer to the bed by himself, the therapist had taught him how.  He was a little frustrated because he only got that short time with him.  Getting admitted on a Saturday was a little rough since not much goes on with therapy over the week end and he gets a little impatient since he is so frustrated.  He said its like his hand and leg can't hear what his brain is asking them to do.  Visiting with the dog was really good for both of them.  Bruno got right up on the bed and laid down with him.

Tomorrow I have to go to the hospital to get a form giving me permission to get his medical records, go back to the Rehab, get it signed and back to the hospital to get the records, including the CD with his MRI and CT Scan, then to Moffitt.  Luckily the hospital and rehab are close together.  Then I wait to hear from the oncologist, Dr. Weber.

Doctor Skuabble.

Don's physical abilities got worse today, but his confusion got better.  The neurologist (Dr. Campbell) insists it was a stroke and the oncologist (Dr. Weber) wants to be sure since he has seen this before with melanoma.  Let's face it, a second opinion is always good.  The neurologist does not want to call the oncologist, says "I don't chase doctors, they need to call me."  So Dr. Weber tried to call him and he was told that Dr. Campbell said he could talk to the doctor on duty, which he did, but he still wanted to talk to the neurologist personally.  He called and left messages, paged him, nothing.  This is not a common cold we're talking about.  So I spoke to the unit director, gave her Dr. Weber's cell phone number and asked her why Dr. Campbell was not returning the call.  She said he would after he was done his rounds at 5:00. it was 4:55.  So she brought the number to the nurse practitioner.  Derek & I were on our way out.  At 5:06 I get a call from Don's phone.  It was Dr. Campbell asking me what was up with Dr. Weber, he's been harassing him, paging him while he was seeing patients, it had to stop.  After about 3 minutes of ranting & raving I told him there was no reason why he should be going up one side of me and up the other for this, I didn't do it.  He said he wasn't, that it was about setting boundaries and he needed to set the record straight.  He must have gone through the same statements 3 times.  I broke down and cried and asked him why he was doing this do a family member who was under lots of stress already, he said it was about setting boundaries.  I asked him twice to PLEASE call Dr. Weber, he said he would after he was done his rounds.  I wish I would have thought of it, I would have told him instead of wasting 7 minutes harping on it with me, he could have called Dr. Weber.  At 6:00 I got a personal call from Dr. Weber asking me to go to the radiology dept. and get a copy of Don's MRI and CT Scan on CD and bring it to Moffitt on Monday morning.  I called the hospital and they said I can't get it until he gets discharged.  "Oh, but maybe if you ask the nurse, she can get it".  You know I'm going to the top with this.  There was absolutely no need of this.  Unfortunately tomorrow is Saturday so I may not be able to get anything done.  But I'm not dropping it.   Thanks for letting me vent.

Update

Things are a little better but his memory is shot, his left hand is uncoordinated and he has lost his peripheral vision in his left eye.  The neurologist said it was a regular stroke and not a melanoma tumor causing it.  His fever is going up and down so they are doing a blood culture to see if there is an infection, unfortunately that takes 3 days.  He is finding and bed extremely uncomfortable and can't wait to come home.  He's been asking about the blood test every couple hours and they have to remind him it takes 3 days.  They are planning physical and occupational therapy.  Will keep you posted.

He was very happy to see his son.

Totally Unexpected

Yesterday afternoon Don got a bad headache.  He NEVER gets headaches.  Once in a while he'll get something that lasts about 5 mins.  He went to lay down, about 15 minutes later he came out to call his doctor to see if he could take aspirin for the headache.  (His doc wants him to call before taking anything).  As I watched him try to do that, I could see there was something definitely wrong.  I was concerned that he might have had a stroke, so I took the phone and told the nurse his symptoms.  She preferred having us go to Moffitt but didn't want to have us take 45 minutes to get to medical attention so she had us go to the emergency room in Lakeland, 10 mins. away.  They admitted him, gave him an ultrasound, didn't see any hemoraging or tumors but could see the weakness on the left side.  The headache was behind the right eye.  This morning they took him for an MRI but he was combative when they tried to put the helmet on him, definitely not like Don.  I went with him for the second try, he made it half way.  The machine is very noisy and he still had this bad headache, when they took him out he was in a panic.  When he has these done at Moffitt he's wearing headphones and doesn't have a headache.  All he had here were ear plugs.  They got enough to confirm it was a stroke.

Tomorrow they will do a CT scan with contrast which should determine whether it was a regular stroke or one caused by the melanoma.   Will let you know what happens.

His son Derek is flying down tomorrow, I'm sure he'll be happy to see him. 

Progress

I'm almost scared to say this, but I think they are finally onto something.  My last post stated how well he was feeling on just 2 of medication A.  After a week the doctor increased it to 3.  By the time we saw him yesterday, and nausea, fatigue, having to force himself to eat, etc. was back.  Very discouraging.  Like the doctor said, they are going to have to tweak this to suit his body.  He put him back on 2 of Medication A and started him on Medication B.  So far so good, he has energy today, actually woke up hungry, had TWO peanut butter toast without batting an eyelash.  This is only day 2 on his new regimen but its looking hopeful.  He has to call the doctor Monday to report in, if all is well he sees him again in 2 weeks and gets scanned 4 weeks after that to see if the medication is working.  If its working he goes on an 8 week cycle which means we could go home for a while.  I hate to even think that far ahead.  I know I need to stay positive but for now I am going to take it one step at a time.

Again, thank you all for your prayers and positive energy.



We Might Finally Be Getting Someshere!

Don has been taking 1 pill twice a day since my last post and he is doing better than he has in 2-3 months, his appetite is coming back, he doesn't sleep all the time, etc.  I was pleased to hear that the doctor said today that he should increase the dosage to 3 pills a day rather than 4 pills a day like originally planned.  Just a very slow increase.  He may not be able to take the entire dose, but that doesn't mean it won't work.  He sees the doctor on Friday.  Now we have to take care of the boredom.  He wants to call the golf course to see if they have any scrambles early in the morning since there is no one left here to play golf with.

Another Try

Three days on the new meds and Don was totally exhausted again and having dry heaves.  He called the doctor's office on Friday and he told him to stop the meds and go in on Wednesday for blood work and to see him.  His blood work looked great so this is what he is trying.  The new meds schedule was to take 2 of medication A twice a day and 1 of medication B once a day.  Now he is going to try easing him into the proper doses.  He started on Thursday taking 1 of medication A twice a day and he is to call the office on Monday.  If he can tolerate that, then he is to go to 2 of medication A twice a day for a week, go for more blood work and a doctor's visit.  If all is good, he will take Medication B every other day, and after a week, take it every day.  Lets hope this works.  Again, thank you all for your prayers and sending all that good energy.

Still Growing

We met with Dr. Weber today and got the results from Friday's tests.  The MRI was fine, so it still has not metastasized to the brain.  The growths on the lungs have stayed the same & gotten slightly smaller, but they were pretty small anyway.  However, the ones on the liver that had shrunk about 15% have grown bigger than they were before.  One is 8.4 cm, another is 7.0 cm and a third is 4.0 cm.  In inches, that is 3.3, 2.75 and 1.5.  There is another drug he wants to start him on that will be ready Thursday.  If he gets any side effect at all, the doctor said to stop taking it and call him.  If that happens, he will have to inject chemo right into his liver.  He sees the doctor again in 2 weeks.  We hope this one works, what else can I say, other than we are doing fine.

Very Slow Progress

We tried to leave a few times, but Don got so tired in so little time, we had to stay.  For example, one of the first things he does is check the pressure in all the tires, after doing that he had to sit and rest.  After having to rest after every little chore he realized it would not be safe for him to be on the road with such a large vehicle.  On Monday, the 12th, he called the doctor's office.  They had him go in for a blood test, all his levels were good except the adrenal glands.  That should be between 20-60 and it was 4 even though his cortisol levels were OK.  His other problem is appetite, he has none having to force himself to eat.  Quite a change from a month ago when he was eating everything in sight because he was on prednisone.

We have been seeing an improvement in the last 4-5 days.  He is not so exhausted and his appetite is better.  Instead of taking 3 naps for 2-3 hours each every day, he's been taking one 1-2 hour nap.  Friday is his day for CT scans and Tuesday he sees the doctor.

Bruno and I are doing fine.



Getting a Drug Free Vacation

In my last post I mentioned that they were giving Don 10 days then were going to start another treatment.  Well during those 10 days he was on 2 very strong anti-biotics, prednisone, a pill to control blood sugar and one to reduce the stomach acids.  Well by now we all know how he reacts to medication, it really did a number on him, which got him discouraged, angry and depressed.  It got so it was very difficult for me to keep my own spirits up.  Don mentioned, and I agreed, he should get a couple of weeks off drugs.  He's been off everything for 5 days now, but still needs more time before they start pumping him with more.

 He had a doctor's appointment today.  The first thing he said was that he needed a vacation from the drugs, like 4 weeks.  So tomorrow he is going for an MRI of the brain and on the 27th he will be getting his CT scans so they can have a base line.  Then he will start a new medication, not a clinical trial.  That last drug was specifically for melanoma that has that BRAF mutation that I mentioned before, and after just 5 days, the tumors on his liver had shrunk 15%.  But again, it was part of a clinical trial and had to be given in a specific dose.  The one they are starting him on is also for the BRAF mutation but they are going to start him in small doses and progress as his body will allow.  Here's hoping it shrinks those nasty tumors.  Hopefully we will go on a 10-14 day trip to get a change of scenery.   I will keep you posted.



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.