TARCEVA REALLY SUCKS

Since my last blog Jon has been in the hospital. At one point his fever spiked to 106. After much hydration, antibiotics, anti-inflammatories, x-rays, ultrasounds, etc. it is finally the consensus that this, indeed, is an allergic reaction to Tarceva. Starting today they will give him high doses of steroids to reduce the inflammation in his lungs. He should be breathing on his own and out of the hospital by Monday. We have stopped the Tarceva and am planning on delaying the second round of intravenous chemo for a week or two.

On a positive note, we have had excellent care from the doctors at Auburn General Hospital. He has an internist, pulmonary specialist, and oncologist. The nursing staff has a wide variety of quality but there is always a Nichols close by to keep their eye on things. Elizabeth and Staci both came home to be with Jon and, of course, the entire Nichols clan has been to visit. Maelie (our granddaughter) even made a special appearance this morning.

Today is Jon's birthday and we are planning a party in his hospital room at 4pm with his favorite Baskin Robbins ice cream cake. What a way to celebrate your 52nd birthday!

Tarceva Sucks

Jon has been on an oral chemotherapy, Tarceva, for the past week. Started out rather innocuous with the only expected side effects skin rash and diarrhea. Not for Jon...he spent last night with an allergic reaction of fevers, chills, headache, and extreme night sweats. So on his "day off" from chemo he got to have IV hydration and antibiotics (just in case of infection). He goes back tomorrow for follow up lab work and more hydration. He is resting comfortably on the bathroom floor next to the heater :(

CT RESULTS ARE IN!

We met with Dr. Chue at 1:00pm this afternoon and he was giddy with excitement. The CT scan revealed that Jon's tumors have shrunk to nearly half their original size!! At this point, the outcomes are better that Dr. Chue had even hoped. In addition, Jon's alkaline phosphotase is now a solid 83, also half its original value. Dr. Chue commented that he believes the tumors are probably even smaller than the CT revealed because they leave pockets of dead tissue in the liver that would not be differentiated from a tumor in a CT scan.

Jon has two weeks off and then back on a second set of intravenous chemo for twelve weeks. At the end of the twelve weeks he will have a PET scan and Dr. Chue expects him to be stabilized at that time. He would then use interferon (injections) to build up his immune system and Tarceva (oral chemo) to assure no additional tumor growth for a period of time (weeks??).

Interestingly enough the Seattle PI featured a front page article today on Aaron Barret and Dr. Chue. Aarron was the first pancreatic cancer survivor at Seattle Cancer Treatment and Wellness Center treating with the same protocol Jon is receiving. He is currently training for the Seattle to Portland Bike ride in July. I thought I might give him a call to see if we can join him :)

Still Waiting...

Jon had his CT scan today at 9:30. He was quick to congratulate the technician, explaining to him that he would be the first person to view his cancer-free liver :)

I am praying he's right!!

We were hoping to get the results over the phone today but Dr. Chue only gives them in person. We will call first thing in the morning to try to schedule an appointment for some time tomorrow.

CT SCAN WED AT 9:30AM

Sometimes I Forget Who I'm Dealing With.....

With Jon's energy taking a dive this month I have been concerned about what 12 more cycles of chemo will do to him with just a 2 week break. He has also been interrogating me repeatedly about the details of each of the new chemotherapy drugs. Thinking that he might be apprehensive about his new regime I suggested that maybe we ask Dr. Chu to consider using the Tarceva (oral chemo) a week or two longer for a better break between intravenous chemo. Jon replied "Doc, my goal is to take the largest dose of chemo ever given to any man in the shortest amount of time and live to tell about it."

What can I say???

Another Day

Jon woke up this morning and said, "Hey, it's been five months and I'm still alive!"
I said, "I've noticed." :)

I've been recently giving frequent thought to the original prognosis of 4-6 months and am thankful for every day. We will both breathe a sigh of relief when we pass the 6 month mark (May 2).

There is some controversy regarding Jon having a CT vs a PET scan next week. Last I spoke with Dr. Chu he was leaning toward the CT for now (cheaper, good imaging, and covered by our insurance) and saving the PET scan for after the next series of chemo (imaging more sensitive to cancer cells, $8000, and possibly not covered by our insurance). Either way the test will be done sometime late next week. I will probably scan it and put it on the blog if the news is good!

Jon is still exhausted from his low red cell count and sleeps most of the day. We are considering trying an oxygen bar to see if we can boost his energy level. Low RBCs=Low Oxygen=No Energy. I found one in Seattle but it is closed tomorrow so I will keep looking. All the doctors tell us that this is perfecly normal after 13 chemos so we are not overly concerned. I know Jon is frustrated with his lack of activity but he remains in surprisingly good spirits. He is on the couch with a warm blanket and a stack of UFC videos!

Powerful Prayers

All of you people out there who have used your positive thoughts and powerful prayer for Jon need to add one more person to your list...

His name is Paul, he is 25 years old and in the advanced stages of testicular cancer. He is married to Kelly, they have one small child and she is pregnant with their second, due in June or July. They are close friends of my receptionist and friend, Sarah. He has already failed chemotherapy and surgery and is now undergoing a stemcell transplant.

His doctors say this is his last chance for a recovery.

I say never give up hope.

Please keep Paul, Kelly and their family in your thoughts and prayers.

Today's Bloodwork

Jon's alkaline phosphotase was down to 110! {Normal is 38-114, 195 at his worst}.
An excellent indicator of liver function. His red cell counts are all low and he doesn't have much energy these days (except the day after chemo when he's pumped full of steroids!)He is still too high for any Procrit to increase his oxygen level. I've been force feeding him rasberry leaf tea to help his red count so hopefully we'll see some improvement.

CT scan next week...still waiting on the day and time.

The hair on his head keeps growing in like goose down (pure white and soft) but the hair on his legs and back is starting to fall out. Pretty wierd!

The Link

The link didn't display as I had hoped. It is www.seattlecancerwellness.com Select "Stories of Real Hope" and have a box of Kleenex ready!

The Link

The link didn't display as I had hoped. It is www.seattlecancerwellness.com Select "Stories of Real Hope" and have a box of Kleenex ready!

The Link

The link didn't display as I had hoped. It is www.seattlecancerwellness.com Select "Stories of Real Hope" and have a box of Kleenex ready!

A Personal Experience

Anyone who might be interested in our cancer experience should check out "Stories of Real Hope" at the Seattle Cancer and Wellness Center Website. It gives you a real feeling or what it is like to be a part of this amazing experience.

Update From Dr. Chu

It has been a much better week for Jon. Acupunture on Tuesday seemed to work miracles for the respiratory infection he had been fighting. The zpack, supplements, rest, and time probably were also contributing factors. He was able to do most of his normal activities, including 3 weight workouts so he's a happy guy. Staci has been visiting this week and Jon even joined us dancing Friday night...of course he did bring a blanket and pillow to sleep in the car once he ran out of steam :)

We had a visit with Dr. Chu on Tuesday who gave us more information about the remainder of Jon's treatment. His last chemo for this cycle will be March 20. He will have a CT scan shortly thereafter. On March 21 he will start on Tarceva, an oral chemotherapy for two weeks. (sidenote: Tarceva will cost $1900 for two weeks, our insurance covers $400 of it. We are thankful its two weeks and not two months!!)In early April he will start his second round of chemotherapy with a different "cocktail". This combination is designed to kill any microcancer cells so his cancer does not return. That cycle should last another 12 weeks so we will be at this until June.

We were a little disappointed to discover that, even if his CT is normal, he will need to do another round of intravenous chemo. However, being the goal oriented people that we are, it is helpful to know what to expect over the next couple months. We are optimistically anticipating the CT results and expect to be backpacking by August.

Through this process Jon remains the most remarkable person I have ever known. His positive mental attitude, self-discipline, strength, and dedication are astounding. He has even managed to hold onto his sense of humor. When Dr. Chu was examining him with a student from UW Medical School, Jon told the student how fortunate he was to study with a legend like Dr. Chu....told them both the Dr. Chu was the "Johnny Cash of Oncology"!

Support

Hi Everyone! It's Staci writing...I wanted to pass on some things I've seen showing support for my Dad.

From my cousin Kyle's myspace blog:

"Friday, December 08, 2006 - Pray for my Uncle Jon

I have recently become very close with my Uncle Jon. He took over a lot of the roles my parents played when my parents moved to Japan. He was recently diagnosed with cancer and things aren't looking good from what I hear. The cancer is spread out from his pancreas, lungs, liver and lymph nodes. Please keep him your prayers. I want him to make it!!!"

(By the way, Kyle just earned All-American honors at the NAIA National Wrestling tournament this last weekend!!)

A recent e-mail from my old college friend Tobias Brace:

"Your father is an inspiration. I wish all my patients took that much interest in their health. hell I wish I did. Anyways, I get a good vibe on him too...give your dad my best. hoo-rah...But if anyone was ever in the top 3% and a survivor on top of that it would be your Pa."

You have no idea how much your support means to us!

Ann Joins the Girls Team

Ann Lenting, daughter of Jon's sister Tonya and husband Tony, takes a few inches off in honor of her Uncle Jon

Sick of Being Sick

Jon has had a pretty tough week. He had been struggling with a headcold for the last month that has progressed into a respiratory infection. The doctor gave him some antibiotics on Tuesday, of course he refused to take them. Finally after a week of low energy, fever, and body aches he started his zpack last night. Hopefully he will start to feel better this weekend. As you can imagine, after eleven chemos his body is pretty depleted. We are really not sure if his fatigue is from the cold or all the chemo. His blood work remains good. White cells normal, red cells only slightly low, and alkaline phosphotase slightly elevated. All good signs that he is holding up well, all things considered. Three more chemos to go before the next CT scan.

True to form, Jon has still managed to get a few weight workouts and walks in this week. He even went to the airport on Thursday to get on a plane to take him to the Collegiate National Wrestling Championships to watch our nephew Kyle wrestle for a National Title. Unfortunately, the flights were cancelled due to snowstorms in the midwest and he was unable to go. Although it was probably for the best, considering how sick he's been, Jon was disappointed he was not able to watch Kyle compete. So far Kyle has won all of his matches and continues to compete today. We are cheering for you from home, Kyle!

I hear rumors of more haircuts on the way and am awaiting emails of any pictures you might have. For the record, although Jon may appear completely bald in the pictures, he actually has the same haircut as all the other men (I believe its a #2). It's just his hair has turned so grey you can't see it very well! It will be interesting to see how it grows back after chemo. It kind of looks like goose down these days.

Thanks again to everyone for all of the recent photos, emails, cards, phonecalls, prayers, and support. It keeps us going strong during weeks like this.

FROM STACI

I might not have shaved my head, BUT I'm damn sure I cut off more hair than everyone else put together. That's gotta count for something!

Staci




--------------------------------------------------------------------------------