June 18, 2008

June 2008 Update


Hi Everyone,

Sorry I haven’t written in a while. The last two months have been relatively uneventful, so I haven’t had much to report.

Evan has continued to receive chemotherapy treatments every other week, and he hasn’t had any major complications since I wrote last. But with each additional treatment, it seems to take him a little bit longer to recover. In the beginning he would start feeling better within 3 or 4 days. Now, it takes a good 8 to 10 days before he feels like doing much again. Basically, he starts to feel better just in time for the next treatment. After 10 months of chemo, the cumulative effect is definitely taking its toll.

On the bright side Evan looks great! The visible signs of his early treatment have faded a lot over the past few months. His hair has grown back and a lot of the swelling in his face and upper body has gone down. He looks much more like himself these days. Now, if only he could feel as good as he looks!

Evan’s next MRI is scheduled for this coming Monday, June 23rd, at 11:30 am. We’re hoping the news will be good enough for the doctors to start talking about giving him a break from treatment sometime soon. The man from Colorado, whose treatment I’ve been following online, was able to stop chemotherapy after he had 3 good MRI’s in a row, showing no new tumor growth. He’s been off treatment for 8 months now, with no signs of new growth. We are desperately hoping for similar success.

Our family has planned a special fast for Evan this Sunday, before the MRI. If anyone else would like to join us we would be so grateful. We appreciate all your prayers and support so much! Thank you, Thank you, Thank you!!!

Love,
Margot

April 30, 2008

GREAT NEWS!!!

Hi Everyone,

We got GREAT news today!!! Evan’s tumor shrunk more than 50% since his last MRI. It’s less than half the size it was just 8 weeks ago! It’s even smaller now than it was after radiation back in November. In February the tumor measured 3.4 cm x 2.6 cm. Today it measured roughly 1.5 x 1 cm. Even our doctor was pleasantly surprised by such impressive results. He said that this level of improvement is most likely the result of faith and prayer, because medical science can’t explain it and would not have predicted it!

We wholeheartedly agree with that! Without a doubt, we know we have all of you to thank for it! Thank you so much for all of your prayers for Evan and our family! They paid off in a big way today, and we are so grateful!

Since the tumor is obviously responding well to this chemotherapy, we’ll just keep doing what we’re doing for the next two months and check it again at the end of June.

It’s going to be so much easier to live with all the side-effects now that we know it will bring some significant benefits! After the last MRI in March, when we found out the tumor had grown back to almost its original size, I felt like we had endured 7 long months of treatment with little or nothing to show for it. When the new chemo turned out to be so miserable, we really started asking ourselves, “What the heck are we doing all this for?” I don’t know how much longer we could have maintained the strength and motivation to keep fighting without seeing some really positive results today. We walked into the doctor’s office prepared for the worst, and walked out with a miracle! (We practically skipped all the way to the car!) It was the best day we’ve had in a very long time!!!

We love you all!

Love,
Margot & Evan

April 23, 2008

4th Chemo Treatment

Dear Family & Friends,

Evan had his fourth treatment on the new chemo yesterday. This one doesn’t seem to be quite as bad, or maybe we’re just finally learning how to keep him drugged enough to sleep through the worst of it. I think we were too conservative with the drugs at first. Now he starts taking the full dose of both anti-nausea drugs as soon as we get home, before the nausea even starts. There’s definitely a learning curve with all this.

Unfortunately, the treatments wreak such havoc on his digestive system, and cause so much pain and stiffness with his bones and joints that he still doesn’t feel good even after the nausea has subsided. There’s just no such thing as a good day on this treatment. In spite of it all, he’s been handling it as well as anybody could. He doesn’t complain and he just seems willing to take whatever this thing has to throw at him.

We had a bit of a scare three weeks ago, a few days after his second treatment, when I noticed that the whites of his eyes were turning yellow. The blood test that checks his liver function had been a little high the previous week, but the yellowing eyes suggested that something more serious was happening. When they re-checked the blood they discovered his liver function had suddenly gone through the roof. The measurement is supposed to stay between 0 and 45, and Evan’s was 217.

To make a long story short, they decided it probably wasn’t the chemo that was causing the liver damage but the new blood thinner that Evan had started taking. They had changed his blood thinner from a pill (Coumadin) to a daily shot (Fragmin) because the shots keep the blood more stable than the pills, and the new chemo can cause the thickness of the blood to fluctuate more than the old chemo. However, the new blood thinner can cause liver problems in a small percentage of patients. Evidently, Evan is one of those lucky few! So, he’s back on the Coumadin, and the liver function is doing better.

So now that Evan’s had his fourth chemo treatment, he’s ready for the next MRI. It’s scheduled for next Wednesday (April 30th) at 9:00 am. We’ll meet with Dr. Choucair at 11:30 am to get the results. If the tumor has shrunk or stayed the same, then we’ll continue the current treatment for another 8 weeks. If the tumor has grown, then we’ll have some tough decisions to make about what to do next. There aren’t many treatment options left, and they all come with huge risk factors.

We’ve looked into a few experimental treatments that may be approved for human trials later this year, but in most cases we would have to submit a tissue sample in order to be considered for the trials. Since the surgeon was not able to safely remove extra tissue from Evan’s tumor when he had his biopsy last August, it would be difficult for Evan to qualify as a potential candidate.

Anyway, that’s the latest. I’ll write again next week to let you know about the MRI results. We send each of you our love and gratitude for all your support. Even on the worst of days we feel so blessed, just because we know you’re there and praying for us. Thank you so much!!!

Love,
Margot

March 25, 2008

New Chemo Treatments

Dear Friends & Family,

I wanted to let everyone know how Evan was doing on the new chemotherapy. He had his first dose two weeks ago (Tuesday, March 11th), and his second dose today (Tuesday, March 25th).

The first treatment took forever because they administer the first dose very slowly, just in case you have a strong reaction to it. From start to finish, Evan was there for about 5 hours. It made him extremely tired and nauseated for about three days afterward. He pretty much slept around the clock those first few days. He has felt a little better since then, but nowhere near as good as he felt on the old chemo.

We had hoped that the stiffness and soreness in Evan’s joints and muscles might improve a little bit on the new chemo, but no such luck. It actually got worse! Evidently, because the new chemo drug wreaks havoc on the white blood cells, at the end of each chemo session they have to give him a dose of another drug that boosts the production of white blood cells in his bone marrow. And wouldn’t you know it, this drug causes bone pain! Over the last few days he’s tried Advil, 800 mg Motrin, and finally Lortab, but nothing has worked to ease the pain.

Today he had his second chemo dose. It went faster this time (only 3 hours), but the nausea hit him a lot faster too. Last time, he didn’t start feeling sick until early the next morning, but this time he was pale and miserable within about 45 minutes after we got home. It’s a lot more intense this time too. (AARGH!!!)

He’s finally resting now, so I thought I’d come down and vent my frustration on the computer. It’s so hard to see him like this, and to be so completely powerless to make it better or easier. It’s infuriating and depressing all at the same time.

On the receptionist’s desk at the chemo center, she has this beautifully framed plaque that reads, “Cancer Sucks!” I’m resisting the urge to go paint that phrase in big giant letters across my garage door right now!

Thanks for listening, and thanks for your prayers, we need them more than ever right now!

Love,
Margot

March 3, 2008

Latest MRI Results

Dear Family and Friends,

This morning Evan had the MRI we’ve been waiting anxiously for, and we met with his Oncologist this afternoon to get the results. I’m afraid we didn’t get the news we were hoping for. It turns out the tumor has started growing again.

The easiest way for me to explain how the tumor has changed is just to give you the measurements:
Last August, the tumor measured 3.6 X 2.3 cm.
In November (1 month after radiation), it measured 3.2 X 2.3 cm.
Today, (after 3 months of chemo), it measured 3.45 X 2.6 cm.

Basically, this means that the type of chemo Evan has been taking is not working and we need to try a different one. He’ll be starting the new chemo sometime this week. The technical term for the new drug is Irinotecan (don’t ask me how to pronounce it). I googled it this evening, and was happy to discover that it’s commonly referred to as Camptosar or CPT-11. (That will be much easier to pronounce!)

This type of chemo is administered through an I.V. once every two weeks, and each dose takes about 2 hours to administer. Evan will also start receiving another new drug called Avastin. Evidently, recent studies show that when a patient takes this drug in addition to the chemo they get better results than when they take the chemo by itself. The Avastin will be administered through the same I.V. as the chemo. I guess the “carefree” days of just popping a pill every night are over, but at least we won’t have to drive to Salt Lake all the time. Evan will be able to receive the treatments right here in American Fork.

Another change is that Evan will get an MRI every 8 weeks from now on, instead of every 12. It made me feel better to know that the doctors will be keeping a closer eye on things. With the type of cancer Evan has, if growth goes unchecked for too long it starts to grow with increasing speed. So, the more often they check things out, the safer Evan will be. Also, it will just be nice for us emotionally to find out what the tumor is doing on a more frequent basis. Waiting three months between MRI’s has been really hard!

Although this definitely felt like a setback, it’s not necessarily a big one. We knew this would be a roller-coaster, with plenty of ups and downs, and this is most likely just a temporary down spot. Another high point could be waiting just around the corner.

I’ve been following the story of another man (in Colorado) who is the same age, has the same type of cancer, and has received the same drugs and treatments as Evan. His wife posts her husband’s updates on a website every month or so (sound familiar?). He was diagnosed 15 months before Evan was, so it’s been like having a crystal ball to see some of the things that could lie ahead for us. After several months on the Temodar, his tumor started growing back and he had switch to the new drugs too. The new treatment has been working fine and there’s been no sign of new growth for many months. So far, our journey has been very similar to theirs in many ways – so I’m hopeful that we’ll be able to have similar success with the new drugs.

As far as how Evan is feeling these days – he’s finally seeing some improvement with his eye, and his hair is making serious progress. He looks good! He’s had no problems with his speech, his energy has been good, and his short-term memory has been relatively good. The continuing problem has been extreme soreness and stiffness in his joints and muscles. It’s basically like he has serious arthritis. When he walks, climbs the stairs, or tries to get up from a sitting position he feels like he’s 80 years old. We had to take a break from physical therapy this month because it was just too painful for him.

Originally, the doctor thought this was just a temporary after-effect of the steroid. But it’s been getting worse instead of better for several months, and now the doctor thinks it has probably been caused by the Temodar. If that’s the case, switching to the new chemo could solve the problem. That would put a huge silver lining on the news we got today!

Well, I’ve been rambling on for a long time now. That’s probably way more information than you wanted to hear. I think it’s probably therapeutic for me to organize my thoughts and sort out my feelings when I write these letters, so thanks for indulging me. And as always, thanks for all your prayers and messages of love and concern!

I’ll try and let you know how Evan is feeling on the new treatments in a few weeks.

Love,
Margot

February 7, 2008

February Update

Dear Family and Friends,

We had our monthly appointment with Evan’s Oncologist earlier this week, so I thought it would be a good time to send out an update. Overall, Evan is doing well. He didn’t have any new side effects on the higher dose of chemo during this last month, so that was great! We’ve noticed some gradual improvement with the swelling in his face and stomach, so we hope that continues. And the most exciting news is that Evan’s hair is finally starting to grow back in the areas where he received radiation (yeah!!!). He happily stopped shaving his head about two weeks ago, and is really looking forward to losing the “bald look.”

On the downside - although Evan has been off the steroid for more than a month now, he’s still dealing with many of its stubborn side-effects. The arthritis-like symptoms are still a big issue. Evan’s joints and muscles are continually stiff and sore. It makes physical therapy, as well as normal activities, difficult and sometimes painful. The doctor says this will eventually go away, but it might take a few more months.

Evan’s eye is still a problem as well. We met with the retina specialist again recently and even though Evan hasn’t noticed any improvement himself, the doctor said it looks much better than it did a month ago. So at least it’s headed in the right direction, but again it will probably take another month or two to heal completely. It’s always a waiting game!

Something else we are waiting anxiously for is Evan’s next MRI. He started his third cycle of chemotherapy this week and the next MRI will be at the end of this cycle. It’s scheduled for the morning of March 3rd. Later that afternoon, we’ll meet with the Oncologist and Radiation Oncologist to discuss the results. What we would love to hear is that the tumor has been reduced enough that Evan would qualify for one of the radiation surgeries that are out there. We know it’s a lot to hope for, but we also know that if it fits into God’s plan for us, then anything is possible.

As always, we express our deepest thanks for the many thoughts and prayers you continually send our way. I don’t know how we would make it through this experience if we weren’t surrounded by so much love and support. Thanks again!!!

Love,
Margot