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