September 20, 2009

Hey Everyone!

We just wanted to let you know that Evan's latest MRI went well. He's been off of chemo for three months now, and the tumor still looks the same. Three months without nausea and no new growth is great news!

We weren't supposed to have another MRI until the end of September, but they moved it up because Evan has been having problems with double vision. It started back in June, but got progressively worse over the summer. With the help of Evan's cousin (thanks Roger!) we got in to to see a great eye specialist who spent a lot of time with us. He determined that the problem is being caused by pressure on "cranial nerve #4." (Sounds very official doesn't it?)

Based on the MRI, this particular nerve passes right through an area in Evan's brain that is starting to show signs of damage from the radiation treatment he had two years ago. Evidently, radiation damage can show up as much as 10 years after the fact (comforting thought). But at least it's not being caused by a new tumor or something of that nature. So Evan is now the proud owner of a high-tech pair of glasses with a prism coating over the right eye. It has worked like a charm!

In other news, the kids are back in school and I started working again. Ryan is in 9th grade this year, Lindsay started 1st grade, and I'm the new secretary for the Counseling Center at Pleasant Grove Junior High School. Working again has been an adjustment, to be sure, but it's actually working out really well for all of us!

That's the latest. I hope you're all doing well! Thanks for all your support!

Love,
Margot

October 15, 2008

Latest MRI Results!

Hi Everyone!

We got some unexpected good news today! Evan had his MRI yesterday and it looks like the tumor has shrunk again!

I have to make one disclaimer though. Our doctor got called away on a family emergency and won’t be back for a few days, so I don’t have personal confirmation from him about this. However, we were too impatient to wait through the weekend to get the results - so we talked Evan’s primary care physician into printing out the radiologist’s MRI report, so we could read it ourselves. Since I knew that many of you were anxious to hear something as well, I thought I would go ahead and tell you what it looks like to us.

Two months ago, the tumor measured 2.3 x 1.3 x 1.9

Yesterday, the tumor measured 2.3 x 1.3 x 1.4

If my math skills aren’t too rusty, that’s roughly a 25% reduction (in mass) since the last MRI.

When Evan was originally diagnosed, 14 months ago, the tumor measured 4.4 x 3.9 x 2.7

So basically, from its original size, the tumor has now been reduced by 90%!!!

Considering how aggressive this form of cancer is, these results are no small miracle! They are surely the product of all your prayers!!! Thank you so much for keeping us in your thoughts, through all this time!

We had been told that this chemo would be most effective during the first few months of treatment and then just level off. So, when the last MRI came back with no change, we thought maybe we had seen the last reduction we would ever get. We had even made plans to take a break from treatment if this MRI came back again with no change. Obviously, as Evan put it, “We can’t quit now!” We definitely needed some strong motivation to face another four months of this, and I think we got it!

As a side note - in my August update, I mentioned that we were thinking about switching to a 3 week chemo schedule instead of the every-other-week schedule we were already on. But then we discovered that Evan’s chemo dose would have to increase if we switched. He would have longer to recover, but the higher dose would probably make him sicker in the short term. We decided that wasn’t an option, so we are still on the every-other-week schedule (just in case anyone was confused).

Thanks again for all your support! We’ll keep you posted!

With love and gratitude,

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