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

January 5, 2008

HAPPY NEW YEAR!

Dear Friends and Family,

Happy New Year!!! We hope you enjoyed the holidays. Our Christmas was an incredibly memorable one! It was an experience we will never forget! We were blessed with countless acts of loving service, as well as gifts of unbelievable kindness and generosity. Some of these gifts were given in person and others were given anonymously. It was truly overwhelming!

Thank you! Thank you! Thank you to all of you who brightened our days and lifted our spirits, in person or in secret, through little notes, cards, e-mails, gifts, or service. We appreciate it all so much, and it has made us anxious for the day when we’ll be able to pay it all forward and do for someone else what has been done for us. Until that day comes, I think we will feel incredibly unworthy and undeserving of so much love and attention. There is just no way to express how grateful and humbled we feel by it all. Thank you again!

We had our monthly appointment with Evan’s Oncologist last Wednesday, so we have a couple of new developments to report.

The best news is that Evan is finally off the nasty steroid (Decadron) that has caused so many problems. Yeah!!! We are very happy to be done with that drug! Some of the short-term memory problems started coming back as we got lower and lower on the dose, and it might get a little bit worse over the few months as the drug leaves his system completely. But right now, that seems like a small price to pay to get rid of the eye problems, the swelling in his face and upper body, and the joint and muscle pain.

In order to start rebuilding some the muscle tissue damaged by the Decadron, and improve the flexibility in his joints, Evan will be starting Physical Therapy next week. I am thrilled about this! I think it will be so good for him to get out and get some physical activity. I really hope it will help him feel a little better and a little stronger. He has his first session on Monday.

Evan finished the first cycle of Chemotherapy on Christmas Eve, and then had a week off before we met with the doctor. Since Evan’s white blood cell count remained so high during that first cycle, and since he didn’t get horribly sick, the doctor decided to increase the dose of chemo for the next cycle. Evan was on 160 mg/day in December. For January he’ll be taking 180 mg/day. If he continues to tolerate the chemo well, they will increase the dose again, to 200 mg/day, for February. The 200 mg/day would be the highest dose they could give.

This information came as a bit of a shock to us (we naively thought the 160 mg/day was the highest dose). We haven’t decided yet whether this was good news or bad news. If the higher dose does not make Evan horribly sick, and it can shrink the tumor faster, then it will be good news. If it makes him horribly sick and we have to go back down to the lower dose, then this will be a long miserable month, and from now on we’ll know that we’re fighting this battle without the strongest weapon available. To put it mildly, that would stink!

So – cross your fingers, and send out a few prayers that Evan will be able to tolerate the higher dose! His next MRI will be at the end of February, after he finishes the third cycle of chemo. Take care, and we’ll keep in touch!

Lots of love,
Margot

December 13, 2007

Eye Appointment

Hi Everyone,

I’m afraid there’s not much to report after Evan’s appointment with the retina specialist on Tuesday. After two and a half hours of testing, he basically just confirmed what we already knew - that the fluid collecting behind Evan’s retina is coming from a leaking blood vessel. The only new information we got was that the problem is most likely being caused by the high doses of the anti-inflammatory steroid (Decadron) that Evan has been taking for the last four months.

The only good news about that is that Evan’s oncologist has been gradually lowering his dose of Decadron, and we’re hoping he will be off of it completely in about three weeks. The eye doctor expects Evan’s vision problem to go away on its own within a few months after he stops taking the medication. If not, the treatment would be some type of eye injections or a laser eye surgery.

We’re not too happy about having to wait for months to see if it goes away on its own. But evidently the treatment options are pretty major, and probably pretty expensive, so they don’t just jump into these procedures unless they absolutely have to. So, once again, the name of the game is “wait and see.” You would think we’d be used to that answer by now, but it doesn’t seem to be getting any easier.

Hopefully we’ll have better news the next time you hear from us. Until then, we hope you all have a wonderful Christmas!!!

Love,
Margot