EXCELLENT RESULTS FROM MDA

Dave had a CT scan and blood work done yesterday, 7/30, and discussions with his MD Anderson doctors today.  To cut to the chase, everything looks great, including Dave.  All the nurses, PAs and the doctors commented on how well he looks.  Gone is the grey-skinned, frail man that slept all day and lost a lot of his hair.  One nurse ran her fingers through his hair, saying how lucky he was to have such a full head of hair.  If you can't tell from the pictures, he is a lot grayer than before, but it looks good on him.  (Men are so lucky that way!!)

Dave checking in at MD Anderson

His melanoma specialist, Dr. Bedikian, is retiring next month, so if Dave has any more issues, he will be assigned a new medical doctor.  As long as he doesn't have any issues, he will continue to see his surgeon, Dr. Ross, who will become his primary contact. We were happy with that, as we like Dr. Ross a lot, and he was the one who suggested Dave forego the Isolated Limb Perfusion (ILP), and instead have a lymphadenectomy.  It turned out to be exactly the right thing to do, since melanoma cells were then found in a lymph node under Dave's collarbone.  If he had decided to do the ILP, the metastasized melanoma cells may not have been found, and the results could have been very different.  We are very happy to continue seeing Dr. Ross.

Dave in his new glasses

Dave is feeling so much better than he was in early April when he had his 'event' as he calls it.  It was a seizure-like problem, and no cause was found. He has been walking several miles a few times a week, he has gotten back to kayaking a few hours at a time, and is talking about starting his swimming again.  He still gets tired after any exertion, and it takes him longer to recover, but I can see improvements week by week.

We've had a really good time while here in Houston.  We're staying at Jon and David's beautiful home, and taking power walks in the mornings.  Last weekend Dave went shooting with his brother and nephew, on Monday we shopped for wedding table centerpieces for Libbie, Tuesday we celebrated Jon's 60th birthday, Mom is here from Charleston for the week so we've been antiquing, and tonight we are hosting our siblings, in-laws and Mom for a dinner at a little French restaurant, Bistro Provence.  We celebrated our anniversary there last year, and decided we want to go again.  Also, Jon, Mom, Dave and I bought new eyeglasses at a great little boutique. We all had to have Jon's okay before we purchased, though.





So Cheers!  We are so thankful.

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.

CHECKUP 3/6/14

It's been a month since I've updated this blog, as it's been a month since Dave had a checkup.  The last one was in Houston at MD Anderson when all the indicators were peachy, and yesterday's results were just as good.  Last week Dave had a brain MRI and a whole body PET/CT scan.  Thankfully, Chad was able to read the radiology reports within 24 hours and told us everything looked good, so we didn't have to wait to get the 'official' review.

Yesterday's visit included blood work.  Dave's white blood cell count stayed steady at 2.3. His platelets improved from 149 to 171, but the GRA dropped from 1.4 to 1.0.  This is the infection-fighting part of his white blood cells, so as usual, we are careful to avoid any infection-carrying people - which means avoiding being in crowds!  Dave dropped 3 pounds since the last time he was weighed in this office, which makes a total loss of 19 pounds.

Overall, both Rosemary (NP) and Dr. S. were impressed with Dave's ability to tolerate his treatments and his great attitude.  They didn't think Dave had much hair loss, but we know differently!  He's lost a ton of hair, but it is growing back. He has lots of short little fuzzy new growth.  You may not be able to tell in this picture.  He's been working on our taxes, and his sister's, and I think maybe he's pulled some of the hair out himself.

Dave's progress is so steady, he isn't scheduled for another appointment for 6 weeks!  Then in August we'll be going back to Houston for another checkup at MD Anderson.  And since we don't think Dave is up for a traveling vacation this summer, we're already starting to plan one for 2015!  We want to take another river cruise and spend a few days in Paris (which is why this blog still has the Eiffel Tower photo - inspiration!).  Who wants to go?

CHECK UP DAY 2 @ MDA

Nothing but good news today.   Dave saw Dr. Ross, his oncological surgeon, after seeing
Dr. Ross' nurse and his PA.  Dave went through his issues with all of them, his fatigue, weakness, hair loss, skin rashes, and the occasional discomfort and pain at his surgery site. All of them, especially Dr. Ross, commented on how good he looks and how well he is doing. Today is a 'day-after' (a shot) so Dave really isn't feeling very well, and he was surprised and gratified at all the positive comments.

We received the results of the blood tests.  Dave's white blood cell count dropped from 2.9 to 2.3.  His platelets rose from 139 to 149 (back in the normal range).  MD Anderson's count of the neutrophils seems to be on a different scale from what we get from Dr. S. in Savannah, so I can't compare these numbers to what we usually see.  We know his liver enzymes were checked, and the PA said all the numbers look good for someone being on this treatment plan. We have the printout, so we will of course share the results with Dr. S.

Dr. Ross requested a new CT or PET scan when Dave gets back to Savannah, and then a return visit 6 months from now.  He told Dave to stay on the treatment plan, and Dr. S. did the right thing by reducing his dosage.  As long Dave doesn't find any new bumps, lumps or moles, he is free to not return, but Dave likes having that second opinion, and wants to stay in touch with Dr. Ross.

It's been a rainy day.  Before Dave's 1 PM appointment, we had an early lunch with Bobbie and Jeff.  Bobbie twisted my arm and we started with a glass of wine to go with our pizzas.  :-) How much cozier the restaurant seemed.  When it was time for Dave's appointment, we dropped off our car at the valet service, and were checking out 1 hour and 8 minutes later. MDA is efficient!  Then when we got back to Jon and David's, the sun came out.  Like I said, nothing but good news today.

CHECK UP DAY 1 @ MDA

Here we are in Houston for the first day of Dave's two-day check up schedule.  I know I'm repeating myself, but MD Anderson runs like clockwork.  We checked in at 9:30, Dave had 4 vials of blood drawn, a chest X-ray, then his visit with Dr. Bedikian, all on separate floors with different check-ins and waiting rooms and all crowded with people.  We checked out at 11 AM.  What a finely tuned and efficient business!

We don't have the results of the blood work, but Dr. Bedikian said the chest X-ray was negative for anything suspicious.  He gave Dave a whole body exam, listened to his lungs and heart, felt his lymph nodes, asked about his treatment and how he is responding, and said the adjustments to his treatment (the 50% dosage based on his counts) was appropriate and clearly his doctor in Savannah is doing the right thing.  He also told us today is his last day, as he is retiring.  He said if Dave feels he needs to see an MD Anderson oncologist in the future his nurse practitioner will give Dave a recommendation for a new doctor.  As far as Dr. Bedikian is concerned, there may not need to be any further check ups at MDA.  He did mention that Dr. Ross, the surgeon, may want to continue to see him, but there does not seem to be a reason to come to Houston unless another problem arises.

Dave will see Dr. Ross tomorrow and hopefully we'll have the results of his blood work.  So far so good!

1/23/14 CHECK-UP

I was under the impression Dave was seeing Dr. S. today, but instead we saw Rosemary,
the nurse practitioner.  Dave hasn't been to the office for two weeks, and Rosemary said it seemed like forever since we've seen her.  She's right; we've been to the office at least weekly since October!

The counts --
WBC rose from 2.5 to 2.9.  We're shooting for 4.1.
GRA stayed at 1.4.  We'd like to see 2.0
PLT dropped from 164 to 139, just one point below the target 140.

PLT, the platelets, help prevent infection, so as in the past, Dave has to be careful to avoid cuts when he shaves, slices veggies, or does anything with a knife or razor in his hand.

Dave and Rosemary spent most of the visit talking about his fatigue.  Rosemary had several suggestions: Do some walking every day, not just every other day when he feels better.  Limit naps to about 30 minutes; no more than an hour.  Don't lie down in bed unless you plan to sleep - no more lying in bed while on the iPad or watching TV.  Stay hydrated.

When Rosemary did the physical check up, listening to his lungs and heart (sounded good) then palpated the liver, she thought his liver may be slightly swollen.  She asked about Dave's Tylenol intake and suggested he cut back even more.  She asked about any symptoms of liver problems he may have, but he did not seem to have any issues, and his liver area was not tender.

Dave is still losing his hair, but not as rapidly as he was in the last two weeks.  He also seems to be much grayer.  Still a handsome devil, though.

Yipee!  Houston here we come.

We leave for Houston a week from today, and Dave has appointments at MD Anderson on Feb. 2nd and 3rd. We assume they will do a complete work up; we'll know more after that visit.

Between these doctor visits, Dave has still felt like being social, in spite of his fatigue. We made a very short (too short) trip to Amelia Island with Mom to see my cousin Anne and her husband Jeff.  We celebrated my birthday (several times!) and Molly's 40th last night. Molly's birthday is Sunday, but she and her family will be in Costa Rica, so we had an early celebration. We've been to a few movies, getting ready for the Oscars.  We have to have our opinions on the winners, you know.  Now we're looking forward to seeing our brothers and their families next weekend in Houston!