Good News

It is nice to be able to report some encouraging news. We have had a great two weeks with minor and major miracles to help us along the way.

We had some insurance coverage hiccups a few days before my planned departure for Houston to start the treatment two weeks ago. Thanks to a lot of caring and helpful people we got that resolved quickly and favorably and were able to go to Houston knowing that we had full insurance coverage for this treatment.

I went down on Sunday night (1/24) and stayed in Houston through Thursday (1/28). I had blood tests,and EKGs and visits with the study doctor, Dr. Falchook, to make sure I met the eligibility requirements for the study. All that went well and on Wednesday of that week, I started taking the new medication.

As part of the clinical trial they monitored me for 10 hours following my first dose. This included hourly blood draws and almost hourly EKGs. After that I went back to my hotel. The next day Thursday I had to return for another blood draw 24 hours after my first dose, then I headed home. I continue to take the medication via oral pill twice a day.

At this point I wish I had X-ray vision to be able to see what is happening to the tumors within my body. Unfortunately I don't, but there has been a significant metric that is pointing in the right direction. Since this started in July I have been taking pain medications to deal with the pain in my pelvic area. The dosages have escalated from a few ibuprofen a day in July to needing two Oxycodones every 4 hours to help alleviate the pain. On the Saturday following my first dose I took my last Oxycodone. Thanks to Dennis and Rosie for taking our kids for the weekend, Allison and I had a nice night out and short but fun hike together. Something that I hadn't felt up to for a long time. At this point it was starting to look like things were headed in the right direction. Sunday I took some Tylenol for a headache. But since then I have not taken anything for pain. I have gone for an entire week without needing any pain medication. Being able to walk with no pain is such a great feeling again. This morning I hiked to the top of Flagstaff and skied down, thanks to Curtis who broke trail the entire way up. I was tired at the end but it's something I wouldn't have even contemplated two weeks ago.

We are indeed very grateful for minor and major miracles, and for the prayers and efforts of many that helped bring them to pass.

Phase 1 Trial

Well since I last updated on Christmas day, there has been a lot happening.  There have been a lot of balls up the air that made us hesitant to post an update only to have to change it days later.  However at this point, many of the balls have landed and we think we know where the others will end up. 

On December 28th I had new scans (restaging in cancer speak) to give us a view of the state of the tumors.  The results were not what we had all been hoping for.  The chemo treatment I had undergone had not been effective at reducing the size of the tumors.  It may have slowed it, controlled its growth, but it didn’t reduce the tumors in size.

Percent of growth in the interval between my last two scans is about 20%.  According to the cancer docs anything less than 20% is considered stable disease and they consider the treatment effective if they can maintain stable disease.  Based on these results and what was medically considered ‘stable’ disease, I was given the option to continue with the current chemo until the time that the TIL cells are ready for re-infusion (early March).  This wasn’t what Dr. Grossmann at HCI thought would be best, but it would be a valid approach if we wanted to.  We weren’t keen on continuing with the chemo, without positive results. 

At this same time, Dr. Grossmann had been in conversation with MDACC and two clinical trials for new drug treatments had a few slots open up at MDACC.  Both drugs are showing excellent results for melanoma patients with distal metastases (cancer spread to other parts of the body).  The only problem was we had to get to Houston to see the study lead investigators to be enrolled in the study and it was Wednesday afternoon with Friday and Saturday being New Years Eve and New Years Day.  So we had to wait until Monday to get an appointment at MDACC.  Turns out that one of the two trials (our first choice of the two in fact) had filled immediately, and no slots were available.  The second trial had slots available and the lead investigator for that trial at MDACC (Dr. Falchook) squeezed me into his schedule on Thursday.  So I headed to Houston with my Dad to meet with Dr. Falchook and to learn more about the study.

This study is for a new chemo drug that targets the BRAF pathway in a cancer cell.  Quick explanation is that if you take out the BRAF pathway then the cell nucleus doesn’t get the signal to reproduce.  Therefore the cells die without reproducing.   This ultimately leads to tumor reduction.  This drug is in a phase 1 trial, which means it is the first treatment on human patients.  And typically Dr. Grossmann doesn’t like to send his patients off chasing unproven phase 1 trials.   However in this case, this drug is very similar to another drug currently in phase 3 (final stage) clinical trial that has very promising results.  This phase 1 trial has been going on long enough that they have some preliminary data that shows this as being very effective as well.   With this initial data, it appears that somewhere between 60 and 80% of patients have seen tumor reduction on this treatment.  This is a chemo drug that I will take orally as a pill 2 to 3 times a day.  So far the side-effects have been very slight for the study participants. 

There are still some hoops I have to jump through before I get the medication.  On our trip to Houston last week I signed the consent form to take part in the study and this guarantees my slot will be held for me.  In order to get the medication I still need to take some tests – echo cardiogram, cardio stress test, and some labs drawn.  The assumption is that none of these will be a problem and I will meet the eligibility requirements for the study.  Once that is complete, I’ll meet with Dr. Falchook again and we’ll start the treatment.  As of right now, it appears that I’ll head to Houston and have the tests done on the 25th, meet with Dr. Falchook on the 26th and start the treatment on the 27th of this month. 

There will be some significant travel between here and Houston while on the study so they can monitor my health and progress during the treatment.  But we feel like this is the best option we’ve had so far and we need to take a shot at it.  I’m honestly excited to be able to take part of this study.  I feel very optimistic about the outcome and feel like we’ve been given a great opportunity to be able to have this drug made available for my treatment.

As is par for the course, we’ll do new scans 9 weeks into the treatment, if they show positive results we’ll keep going with this treatment.   If not, it is likely that we’ll look to TIL at that point.  But we’re hoping and praying that this works the way we need it to and the TIL ends up not being needed. 

We continue to receive lots and lots of well wishes and support from all over, and it is all much appreciated.  We hope the New Year is great for everyone and that 2010 turns out to be a great year to remember. 

Merry Christmas

We are enjoying a very nice Christmas Holiday.  The first week and a couple of days after the last chemo infusion weren't great.  However for most of this week I have been feeling reasonably well during the days.  I've been able to go work and feel fairly decent during the days.  There is still some discomfort and pain that comes and goes and occasional body aches and mild nausea, but overall I can say I feel relatively well.

There has been some good news we have received in the meantime.  The TIL (Tumor Infiltrating Lymphocytes) that were harvested during the surgery at our last visit to the MD Anderson Cancer Center are growing well.  I believe we were told that they have grown to around 400 million cells and they are looking to have a couple of billion cells ready to infuse in February or March.  We are excited about this news for a lot of reasons.  We had a about a 50% chance of actually growing cell, and we won that coin toss, so we like that.  It means the trip, the surgery, and recovery was worth it.  And this now gives us another possible treatment in our quiver with some of the best odds of defeating the melanoma.  This doesn’t mean for sure that we will use this treatment.  If the chemo we are doing now is effective we won’t stop a working treatment to try something else just because the odds are better.  But like I said we’re glad to have that arrow in our quiver.

Yesterday I got to do something that I thought I might not get to do at all this winter.  I got to go skiing!  And those who know me well, know how much I enjoy being on skis.  First thing yesterday morning Curtis picked me up and we met with Lars and Brit and headed out for a backcountry tour into Silver Fork.  It was cold and beautiful and cold, but well worth a few shivers to get out and enjoy the wonderful Wasatch mountains.  We had a great run in the meadow chutes and headed back to the car.  I was slow, and had some significant pain in the pelvis where the tumor remains, but I was very grateful to have the chance just to get out, and especially grateful to Lars, Curtis and Brit for the patience with my slow pace.

After we finished, I met with Allison, Sarah and Cameron who picked me up in the canyon and we headed up to Brighton where we met Uncle Andy, Grandpa Ted and Grandma Charlotte to spend the afternoon riding the lifts and skiing.  Again it was cold, but the kids said they were warm and had a great time skiing with their grandparents and their rockstar skier uncle.

It meant a lot to me yesterday to be able to ski with the kids and to be able to get out into the backcountry.  Here's to lots more days like that in the future.

Heading down the road for treatment, there's quite a bit going on in the next week or so.  Monday (Dec 28) I have new CT scans that will tell us if the current chemo treatment is working.  Following the scans I meet with Dr. Grossmann at HCI to discuss the results of the scans and to map out the next several weeks of treatment.  And then on the following Monday (Jan. 4 - Happy Birthday Laura) I am going back into HCI for another chemo infusion.  I won't know what happens after that until I meet with Dr. Grossmann this week.  

We hope that everybody is enjoying the Christmas season.  We have much to be grateful for not the least of which is the birth of The Child in Bethlehem.  Merry Christmas and a Happy New Year to all.

Back in Treatment

It's probably about time for an update. 

I am writing this as I sit at HCI waiting for them to prep the drugs fom my next round of treatment.  The surgical incisions from the surgery in Houston have healed up well and I'm starting my next round of treatment today.  I'm sitting looking out the east side of HCI enjoying the view of the fresh snow that fell last night.  It's great to have snow again in the valley and the mountains.

The next treatment is a Carboplatin/Paclitaxel chemotherapy.  This regimen is considered moderate in its toxicity and the potential side-effects.  The chemo is delivered via an IV (that they just put in) for a couple of hours as an outpatient procedure.  The regimen is not terribly demanding.  I have to come to HCI once every 21 days for the infusion.  So I'll get an infusion today, and another one 21 days later, and then another one 21 days after that.  Following the third infusion we will likely do new scans to see if the treatment is being effective or not.  At that point we will reevaluate treatment.  If this chemo is working, it is likely that we'll continue with this treatment, otherwise we may resort to the TIL in Houston. 

We are looking forward to Thanksgiving and having a chance to be with family.  We do have much to be grateful for. Not the least of which is great support and prayers extended to from great friends and family.  We hope you all have a great Thanksgiving.