DECISION TO STOP CHEMO

Dave's seizure on April 6th was very scary, and a turning point in his treatment plan. Although there was absolutely no evidence of cause for (or, thankfully of any damage from) the seizure, we can't help but attribute it to either his drugs or maybe even the fact that his body is just plain worn down.  The x-ray, CT scan, EKG, EEG, MRI, MRA, ultrasound, and echo-cardiogram he had two weekends ago could not identify any problem, and a stroke was ruled out.  His oncologist, Dr. S. told him to stop injecting his Intron for at least a week, and to make an appointment at his office.

That office visit was yesterday, April 17, and I was out of town.  I didn't get to hear the discussion, but the bottom line is Dave decided to forego any further treatment, while he has no evidence of melanoma in his body.  

Dave had contacted his MD Anderson oncologist, via email, and had a phone conversation with the nurse practitioner.    They had no objection to Dave stopping the treatment, although they made it clear that they were not convinced that his drugs were the cause.

Dave was on a year-long treatment plan, as you may remember.  The first month (last October) he had four weeks of daily (Mon.-Fri.) intravenous treatments.  In November he started a three-times-a-week injection of Intron.  By April 6th, he had had 6 months of the 12-month protocol.  Unfortunately, there are no studies that show the effectiveness of a 4-, 6-, or 8-month treatment as compared to the 12-month standard.  Dr. S. said early on that over 50% of patients cannot even finish the first month, and that completing the first month seems to have to most benefit.  

Dr. S. advised Dave to continue; his reasoning based primarily on the fact that an Intron-related seizure is such a tiny risk.  And we don't know that it was related to the drugs at all. However, the person that experienced the seizure, Dave, didn't like even the tiniest of risk of it happening again.  Dr. S. was in agreement with Dave's decision.  It wasn't his preferred option, but he certainly understood Dave's position and had no issue with Dave's decision. Backing up a little, I should say Dave went into the discussion fairly certain he wanted to stop, but was open to a compelling argument to continue.  The studies just are not available to compare 6 months of treatment to the benefits of 12 months.  We will see.

In the two weeks Dave has been off his drugs, his color is better and he's gained a few pounds.  Compared to a month ago, his white blood cell count and GRA has improved (though they are both still low), and his platelets are back in the normal range.  Such an improvement already!

Dave will be getting checkups with Dr. S. and at MD Anderson every 3 months for a while, alternating between offices.  I appreciate everyone keeping up with this blog, but since the postings now may be few and far between, I will also post a note on Facebook when I am updating.  

Melanoma has been a nightmare, but having such great support from our family, friends and medical professionals has really made us grateful.  More than I can express, more than you know.

OVERNIGHT IN THE HOSPITAL

We just came home after Dave's 28 hours in Memorial Hospital.  We were at our Parish Weekend in Waverly, GA (near the GA-FL border) when, during brunch, Dave had an episode that looked like a seizure.  We were having brunch in the camp dining room with several parishioners.   I asked Dave, just as he was setting down his plate of food, if he would bring me coffee when he got his.  He went to get coffees.  With two cups in his hands, he got dizzy, then was unable to control his movements, and was unable to ask for help.  I was not watching him, so we don't know exactly what happened, but someone was immediately by his side (our priest's wife, we think, who is a nurse) and suggested he put down the coffee.  When our priest came over to me to tell me Dave was having trouble, I turned and saw a couple of people helping Dave walk to a chair.  His hands, arms and legs were spastically moving and he had trouble walking.  He sat down, someone got him water, and as he sat and drank his water, the 'seizure' (which is what it looked like to me) passed and his jerky movements stopped.  Someone brought his plate of food to him, he ate a few bites, and someone asked if he was feeling better.  He was trying to say he probably should eat the healthy food (eggs) instead of the sweet food (cinnamon roll) but he couldn't quite find the words.  In the meantime (between getting him in the chair and while he was eating) I ran back to our room to get my phone, and called Chad.  Chad said to call 911 but as we were talking I got back to the dining room and Dave seemed much better.  He was eating and talking, slowly but clearly.  I really didn't want to go to a hospital in Waverly, GA, so told Chad that unless Dave has another episode, I wanted to drive back to Savannah where Dave has his doctors. Chad told me I was taking a risk, but to me, it was a risk worth taking.  I knew that if Dave were to have a problem, I would pull off the road and call 911.  People stayed with Dave while I ran back to the room to throw all our things in the car, gathered up Coleman from his playtime with his buddy, drove the car to the dining room to pick up Dave, and we were on our way.  It was pouring rain all the way.  Dave leaned back and closed his eyes, Coleman concentrated on his DS, and I white-knuckled it through the rain and thought about the possibilities - melanoma in his brain?  a random TIA?  a stroke?  It was a long 90 minutes to Memorial.  Frightening!!

We went straight to the ER.  Molly had called a friend of hers who met us there to pick up Coleman.  Oh - I didn't mention Molly, Chad, Chase and a friend were in SC at their beach house, but packed up and were on their way home to help out.  Chad had called ahead to let the ER know we were coming.  Within a few minutes, Dave was being checked over by an ER doc.

He had a chest X-ray, and EKG, head CT scan and blood work, and an IV port inserted (though it was never used).  Chad came to Memorial to see him and talk to the ER doc.  After several hours, knowing it could take several more hours to get a room, I went home to change clothes, get pajamas and clean clothes for Dave, dinner for the two of us, and I needed to drop off Coleman's clothes and school backpack.  Our internist's partner, who was on call, called me to say he had spoken to Dave and reviewed the test results.  He ordered a few more tests, and said our internist would see him on rounds in the morning.  Back to the hospital for me, and surprise, Dave had been assigned a room in the Endovascular Procedure Unit (EPU).  When I arrived, he was off getting his MRI.  I waited about another 1 ½ hrs. before he came back.  By then it was after 9 PM.  Dave ate his dinner and I went home.

At 2 AM he had an ultrasound, and at some point, I don't know when, he had an MRA.  I had a very restless night, as you can imagine, not getting to sleep until about 1:30, and at that point I chugged some NyQuill, as my head was stuffed up and my throat hurt.  I had about 5 hours of sleep, then finally got out of bed at 7.   I felt like poop - like I had a huge head cold.  Hoping it's just allergies, I swallowed some Benedryl and Airborne.  Molly called to tell me Chad had already seen Dave, he was feeling well, and all the tests so far had come back negative for indications of a stroke.

I went to the hospital, and Dave was fairly cheerful.  He had seen Chad and our internist. We knew his oncologist and a neurologist would be coming by, and he still had to get an echo cardiogram.  After the neurologist visited, he ordered an EEG to rule out a propensity for further seizures, suggested that Dave take a low dose aspirin every day, and although it was prescribed in the morning, there was no need to continue Lipitor, as Dave's cholesterol counts were good.

After the X-ray, CT scan and EKG, the 'working theory' was that the seizure was a TIA, possibly a side effect of the chemo drug Dave is taking 3 times a week.  Dave's oncologist, Dr. S., came about 3:30 pm today, after the neurologist, and the echo cardiogram, and he was not willing to say that was the case.  He said this type of episode was atypical and had a frequency of less than 1% on patients taking interferon.  (By the way, he has already spoken to Chad, knew what was going on with Dave, and had done some research before seeing us.)

Dr. S. said to skip this week's interferon injections, and make an office visit next week.  He was recommending staying on interferon, but as he said to us, you are the decision maker.  I told him after such a scary event, my inclination is for Dave to get off interferon, even if it's just a 1% chance of having a seizure or TIA.

Nice wrap - and pony tail (26 electrode wires)

The tech came in to do the EEG, and when he was finished the charge nurse came to say the results would not be back for a while and Dave may need to spend another night.  We told her we REALLY wanted to go home, especially since Dave was feeling fine and every single test had been negative for symptoms of another problem, and there were no signs of damage.  She left to call our internist, and came back with the good news that he was discharging Dave.  Hooray!

Getting highlights?  No, an EEG.

We drove into our driveway just after 5 pm.  It's been a scary time, but ALL the tests seem to indicate Dave is a healthy guy, the 'episode' has no explanation, and all he has to do is be extra-vigilant for the next week.  We won't go far from home!

Since this episode happened in a dining room full of our parish members, we know we've had lots of prayers for Dave's good health, and we thank you all for your support.  We also had innumerable offers to help, as one friend put it, "for ANYTHING."  Molly, Chad and the boys cut their time at the beach short to come back to help.  The friends and family I contacted offered their best wishes and help.  We are so grateful.