Ben Jacobsen

He's up the trail

2010-10-13T16:08:00.000-06:00

Ben died this afternoon at 3:00 p.m.at home. His passing was peaceful and, mercifully, rather quick. The funeral will be at noon on Wednesday, October 20th, at the Parleys 6th Ward, 2350 South 2100 East in SLC. Our family will greet friends at that same location Tuesday evening from 6:00 until 8:00 p.m. and Wednesday from 10:45 until 11:45 a.m. Thanks again for all of your wonderful concern and support.

Bottom Line

2010-10-06T22:25:00.002-06:00

The medical treatment “doors” which I needed to be open at this point in the journey are not open and they are no longer a future option. The lesions in my brain, despite stereotactic radiosurgery, continue to cause swelling and frequent, serious headaches which require steroids to reduce the swelling and relieve the pain. The steroids make me ineligible for the Ipilimumab treatment option. I have virtually no appetite, so my weight and energy have steadily declined to the point that my body would not be able to tolerate the very intense tumor infiltrating lymphocytes procedure in Houston. The “bottom line” is that my life expectancy is now short, so I now begin to move sooner than I would like toward the end of this journey but to the beginning of what will surely be an exciting new journey without the pain and stress of the past few months. I will be delighted to be free of pain but I shall very much miss family and friends (for a season), biking, early morning “Dawn Patrol” in the snowy backcountry, the chance to help create a respected structural engineering business, hikes to Grandeur Peak with Allison, soccer games, violin recitals, Christmases, Hebgen, etc. I hope I will be allowed an occasional “hall pass” to observe from afar the significant future events in the lives of my family.

Allison and I are deeply grateful for the love and support which we have received from medical professionals and wonderful friends and family, near and far, during the past 15 months. It has made the journey less difficult. Thank you!

Although my mortal life has been shorter than I had hoped and anticipated, I have been greatly blessed. I have a truly remarkable wife; three bright, good children with great potential; faith in the Resurrection and eternal family relationships; six siblings who have loved, challenged and helped shape me; parents and in-laws who have loved, encouraged and cared deeply for me; great, faithful, loyal friends; wonderful business associates: and more than a few sacred times when I have known, by the Spirit, who I really am, the purposes of life, and the truths of eternity. I'll be just up the trail and around the bend...

SRS - Chapter 2

2010-09-01T13:48:00.000-06:00

Since the last blog posting, two new lesions in the brain were discovered which further delays my access to the MEK clinical trial in which I am anxious to participate.Tomorrow I will have my second SRS treatment to "zap" the new brain lesions. The pain in the groin lymph node has steadily increased, so on August 23rd we began a series of 20 radiation treatments (five per week) to see if we can reduce its size and impact. It had restricted the blood flow into my right leg by about 50%. I'm hobbling about hoping that we can get eligible for the clinical trial.
As always, we are very grateful for the love, prayers, support, etc. we receive from many great friends and family members!

SRS

2010-07-18T22:43:00.000-06:00

On Friday the 16th I had the Stereotactic Radio Surgery procedure performed. There isn't a lot to report, besides the fact that having your head held in one place for an hour and a half is long enough to wish you were somewhere else.

The procedure went well according to the technicians, but we really won't know anything until we do new MRIs in about 8 weeks. Until then, it's a holding pattern until we get the MRI results that hopefully show us good results so I can get enrolled on the MEK study at MDACC.

Thanks to everyone's continued support and kindness and a special shout out to the Team Firestorm riders who rode the 204 miles of STP this last week. Great ride and thanks for your show of support.

Wild Ride

2010-07-09T08:11:00.004-06:00

The roller coaster ride around here continues to go up and down and throw us wild curves when we least expect them. I probably should have posted an update sooner, but until yesterday we didn’t know where we were headed after the last wild corner.

After the Braf drug stopped working, we had decided to enroll in another clinical trial at MDACC for a MEK inhibitor drug that worked similarly to the Braf drug. So I travelled to Houston again at the end of June. I arrived Sunday June 21^st and was suppose to stay through Thursday of that week. To start off with on Monday I had blood tests then an MRI of the brain. I hadn't had an MRI for about 6 months and one was required before I could start the MEK drug study. Monday afternoon I met with the doctor administering the clinical trial to discuss the treatment and to enroll in the study. When we met, we went over everything - a physical and my current well being and everything was good until we looked at the MRI. The MRI showed 5 very small lesions in my brain. The largest of the lesions was about 6 mm in diameter.

One of the criteria for enrolling on MEK study is that if there are lesions (aka metastases = mets) in the brain they have to be stable (i.e. show now growth) for at least 2 months.; We don't know how long they've been there. It is likely that they are growing and not stable. So for now I am unable to enroll in the MEK study.

Since I wasn't able to start the new treatment I went back to my hotel, changed my flight and came home Tuesday morning.

Hearing that the cancer had spread to the brain was difficult news. This may have been the most difficult blow yet. But from where I sit now, we are very optimistic and feel that we have a lot of reasons to hope for a positive outcome.< After I got home we set up an appointment with Dr. Grossmann at HCI. I hadn’t seen him since I started the Braf trial in January. It was good to see him and he helped us understand what our options were and we determined a game plan. We decided the best plan of action would be to treat the brain lesions now. After the treatment we would monitor them and if they prove to be stable for two months then go back to enroll in the MEK clinical trial. In order to treat the brain lesions Dr. Grossmann referred me to a neurosurgeon at HCI. Prior to meeting with him, I had another more detailed, higher resolution MRI to better determine the exact location of the lesions, and to make sure there weren’t any that didn’t show up on the MDACC MRI. We met with the neurosurgeon on Tuesday of this week. He suggested that we use Stereotactic Radio Surgery (SRS) to treat the lesions in the brain. They have had very good success treating cases similar to mine with this treatment, and especially good success in melanoma patients. The success rate is somewhere around 80%. We are used to seeing numbers the exact opposite to that, thus the optimistic and positive outlook.

Despite having surgery in its name SRS is more of a procedure than a surgery – no incisions involved. SRS is also known as Gamma Knife or Cyber Knife. My rudimentary understanding of the procedure is that it directs a very intense, very focused beam of radiation at the lesion within the brain, killing it on the spot. It is an outpatient procedure that will take one day and with no activity restrictions following.

I go in on Friday the 16^th of this month to have this done. Once this is done we will have to wait two months before we start the next treatment. We will do scout scans about 4 weeks out to see how things look and then a full MRI at 8 weeks to see if they are stable (hopefully nothing but scar tissue left). If they are stable then I’ll travel back to Houston to enroll in the MEK trial. If not we still have a number of good treatment options that include the TIL cells that were harvested in ’09, Ipilumimab and another chemo regimen.

This has been a long journey and from the looks of things, it will continue to be. We are very thankful for people for enduring with us through this. The fact that people continue to show care and give support means the world to us. THANKS.

MY STARS! THUNDER AND LIGHTNING! RATS AND BLUE BLAZES! SUFFERING CATS! BLISTERING HOP TOADS! ZOUNDS AND GADZOOKS!

2010-06-06T21:17:00.000-06:00

If you are familiar with the children's book "Elbert's Bad Word", you 'll understand the title. For those who haven't read it, the moral of the story is that sometimes you need strong words to express how you feel but they don't have to be bad words, and the words above are the ones used by Elbert when the croquet mallet falls on his toe.

This week I needed strong words to express how I felt.

Last week was the end of another 9 week segment, so I had scans again. And unfortunately the scans show the primary pelvic tumor is growing back. It turns out that they now think that it was still there when I had my last scans in March just really well disguised. In all the scans I have seen so far, there has been a definite visible boundary defining the perimeter of the tumor. Turns out in the March scans the boundary wasn't visible and it blended really well into and looked just like the soft tissue around the site. However the Braf drug had worked. They are saying that it shrunk it from 5.3 cm in January to 1.4 cm in March. Now the tumor is back up to about 2.4 cm.

Honestly I am not completely surprised by this. I had started feeling some pain in the area the week before that felt hauntingly familiar to the pain I started feeling last summer.

Since it is now apparent that the Braf drug is no longer working, I am no longer taking the drugs and I am drug free at the moment. The next step is likely another targeted therapy that works similarly to Braf, just downstream on the protein chain I believe (I'm still trying to get educated). This targeted therapy is called MEK. And the clinical trial is again at MDACC. Their trial is specifically for patients that have already been on the Braf drug. There is a two week washout period before I can start this drug trial. I will know more in the weeks to come about what sort of time I'll be spending in Houston to as I start this new clinical trial.

Despite this apparent setback, we are doing well and looking forward to a fun summer with the kids out of school. Thanks very much for all of the kind words and prayers that have supported and helped us through this trial.

No News is Good News

2010-05-18T22:22:00.000-06:00

The last several weeks have been a case of 'no news is good news.' We are continuing to stay the course and from what we know currently, will for the foreseeable future.

Just in case I wasn't clear before or you need a refresher, I'll give a quick description of 'The Course'. My treatment is a clinical trial drug. This drug is a Braf inhibitor. I won't go into all the details of what the Braf inhibitor* does, but I will say it has had a very favorable effect in my case. This drug is a simple pill that I take orally twice a day. However, due to the clinical trial nature of the drug they are only able to give me 21 days worth of the drug at a time. Therefore, I have to return to MDACC in Houston every three weeks to see Dr. Falchook for a refill. The every 3 week visits entail a blood test, a very simple physical, and a EKG. Assuming the results from the tests and physical are fine, they send me home with enough pills for another 21 days. Since my last scan I have been back down to Houston twice. For these visits I fly down the night before, stay overnight, meet with the doctor and fly home that afternoon.

Every third visit, which occurs at 9 week intervals, will include new CT scans. My next visit with scans happens in two weeks. These visits are the same as above but include the CT scans and an Echo-cardiogram.

I am currently feeling great. In fact I would venture to say that I feel better now than I did in July last year when I was diagnosed. The list of potential side effects with this drug are minimal and I haven't experienced any ill effects from it. I had a fun three days with the kids marching around Arches National Park in end of April. I'm back on the bike, and despite my lack of fitness, just feel extremely blessed to be out at all. I'm even almost happy to mow the lawn.

*If you are interested to know more about how the Braf Inhibitor works, let me know and I will be glad to either respond in email or if there is enough interest I can do a post and try to describe it.

Week 9 Scans

2010-04-01T22:23:00.000-06:00

I have now completed the first 9 week segment of treatment for the clinical trial of this new drug. At the end of each 9 week segment they restage to check the current state of the cancerous masses and compare them to the previous state. To do this, I undergo a CT (cat) scan that takes very small slices through my body and provides a cross section view of what's inside.

My last CT scan was performed just after Christmas. Since then I started the clinical trial of the new drug at the beginning of February. I immediately started feeling improvement. That improvement has continued and I have felt better in the last several weeks than I have felt in the last several months. So we were confident that the scans would show progress. What we didn't know was how much progress we had made or exactly how well the drug was working

There are two main regions that the tumors are located. Up until now the scans have shown multiple nodules in my lungs and a couple of enlarged lymph nodes in my pelvic area. The site that was causing me the most pain and discomfort was the primary tumor in a lymph node on my right side of my pelvis. This had grown to be over 2 inches in diameter.

So I met with Dr. Falchook today to go over yesterday's scans. He shows me the images and we compared yesterday's scans with last December's. We look at several nodules in the lungs all of which have shrunk. They are still there but, they are shrinking. We also compared the pelvic area scans. The scans showed no indication of tumor remaining in my pelvic area. The radiologist that read the scans assumed in his report that the lymph node in this area had been surgically removed. This doesn't mean I'm completely out of the woods yet. I still have the tumors in the lungs to deal with and only time will tell if we can get a durable recession from this drug. But it sure feels great to have been able to make a huge step in the right direction.

This is far better than I could have hoped for and we have so much to be grateful for. Not the least of which is the prayers, support, and encouragement we have received from so many of you that have brought to pass this miracle.

Quick Update

2010-03-30T11:53:00.000-06:00

I leave for Houston today. I am now at the end of my first 9 week cycle on this new drug treatment/clinical trial. So that means we will finally do scans. Looking forward to seeing the results. If the way I've been feeling since this treatment began is any indication, then I'm expecting to see good things on the scans.

I meet with Dr. Falchook on Thursday and we will go over the scans and future treatment. I'll check back in after that with an update.

Melanoma Drug Trials

2010-02-25T20:33:00.000-07:00

This week the New York Times has run a series of articles in their health section dealing with melanoma and drug trials. This article focuses on the B-Raf inhibitor drug by Plexxicon - PLX4032. This is one of the two drug trials we had hoped to take part in. We were unable to get a slot in this drug trial, the trial I'm on works in a very similar fashion to PLX4032. My drug is produced by Glaxo Smith Cline and is mentioned later in the series as a drug they would like to test in tandem with the Plexxicon drug.

The articles can be found here:
    Day 1 - A Roller Coaster Chase for a Cure
    Day 2 - After Long Fight, Drug Gives Sudden Reprieve
    Day 3 - A Drug Trial Cycle: Recovery, Relapse, Reinvention

This is a well written series that describes the clinical trials process, its difficulties and challenges. It also speaks to the struggles of the cancer patients. Being in the thick of it right now, has made this very compelling reading from my point of view.

At this point I'm very grateful to be able to take part in this study. It has certainly made a positive difference in our life. We are sure there are still hills to climb, but we're very happy to be where we are now.

As always thanks to everyone for your continued support.

Good News

2010-02-06T21:40:00.000-07:00

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

2010-01-13T20:33:00.000-07:00

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

2009-12-25T19:32:00.000-07:00

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

2009-11-23T09:18:00.000-07:00

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.

Surgery at MD Anderson

2009-11-11T19:16:00.004-07:00

It has been a long day, but a successful surgery. Dr. Gershenwald removed two tumors, one about 4 cm deep and another, deeper, about 7 cm. Both look like good candidates for lymphocyte harvesting to create the TIL. We will know in about 4 weeks if the TIL growth is looking good and 8 weeks to know if it is successful and ready for possible use. The plan now is to recover in Houston until Saturday, fly home and start a new treatment in about 2 weeks

Back to Houston

2009-11-06T22:00:00.001-07:00

This week we had new CT scans. The CT scans are the litmus test for how effective the treatments have been. The CT scans take cross-sectional pictures every 5 millimeters throughout my torso. These images show the tumors in the lungs and in the groin. The Radiologists are then able to compare Wednesday's images with those of previous scans.

This time around we're seeing the tumors going in the wrong direction. The lung nodules have grown and the number has increased. The lymph node tumor to the right of my groin has grown from about 3 centimeters to almost 6 centimeters in the largest diameter. Obviously not the results we hoped we would see.

Step 1 from here Allison and I leave on Sunday for Houston for a week. I have a clinic visit with doctors there on Monday and then surgery to remove the tumor from my groin on Wednesday. From that tumor they will harvest lymphocytes, on the order of a couple thousand, I believe. The harvested lymphocytes will be grown/multiplied in the lab to a couple hundred thousand. These lymphocytes are important because they are preprogrammed to fight the cancer. They call them Tumor Infiltrating Lymphocytes or TIL. The growth/multiplication of the TIL takes about 7 weeks with about a 50% success rate in growing them in the lab. The reason for growing the TIL in the lab is to reinject me with them at a later date and send them through the body to attack the melanoma wherever it exists.

After the surgery comes Step 2 which is a little unclear. We will discuss what comes next with the doctors at MD Anderson and my doctor here at HCI and then determine what will be our best treatment. They tell me I'll need about 4 weeks to recover from the surgery before they consider any more treatment. That leaves at least 3 weeks before the TIL would be ready. So currently my doctor would like to start me on one of a couple different chemotherapy regimens. The regimen is undetermined at this time and these regimens would last 8 weeks. We would need to complete the chemo regimen before we could consider the reinjection of the the TIL. In fact at the end of the 8 weeks we would do new CT scans, and if those scans show that the chemo is effective we may not use the TIL. But since the TIL appears to be one of the most effective treatments, we want to 'bank' it in case the chemo is not effective. If that's the case at the end of the 8 week chemo regimen we will most likely turn to the TIL.

So as is par for this course, we don't know all the answers. But we are proceeding with what we feel gives us the best chance for success, and expecting zigs, zags, and forks down the road.

We're doing well, the kids are doing great and we have much to be thankful for, not the least of which is the great support and prayers of friends and family. We appreciate everything that has been done on our behalf and hope for the best in all your lives.

Home Again

2009-10-18T09:49:00.002-06:00

Yesterday around noon I left the hospital. What a beautiful fall day on which to finally get a breath of fresh air. I got to spend a couple hours in a chair on the front lawn watching the boys play and enjoying great fall colors around the neighborhood. A nice reprieve from a week in the hospital.

We were told by Dr. Grossmann going into last week that the side effects from the IL2 would set in quicker the second time around. And true to his word, I started feeling rather poorly from the first dose. Thanks to a great medical staff and their attention, I received the first 8 doses on schedule (one dose every eight hours). After dose eight, the nurses and the doctor felt it best to wait for a bit. We ended up skipping two scheduled doses and then Thursday afternoon receiving my ninth dose, which would be my last. This dose packed the most punch. A couple of close friends that happened to stop by for a visit that night got to see me at my worst, but also helped immensely by being there. Thanks to a good nights sleep (thanks to an ambien sleeping pill), by Friday morning I was feeling much better. Friday was a day for monitored recovery and then I was released to go home on Saturday.

Now we wait for a bit. We won't know what the next treatment step will be until after I have CT scans done the first week of November. These scans will show us whether or not the treatment is being successful, i.e. tumor is reducing in size. If the IL2 is working, then it is likely we are in for a couple more rounds of the same. If it isn't we'll consider other options.

Special thanks to go out to all those who took care of the kids so that Allison could spend time at the hospital. And continual thank to everyone's thoughts, expressions, and prayers of support, they mean more than we can ever say.

Week 4

2009-10-13T15:42:00.000-06:00

I am back up at HCI for another round of high dose IL2. I checked in Sunday night so they could start me on antibiotics and fluids. Then Monday morning around 9:00 AM they hit me with my first dose of IL2. Since then we've received 3 more doses (1 dose every 8 hours) and I'm due for 5th dose in a couple of hours from now.

The drug side effects have kicked in sooner with this second round compared to the first round. Because of that it is anticipated that I will not receive as many doses as the first round and they will probably spread them out to try to better combat the side effects.

We appreciate the many people that are helping out in many ways, especially those watching the children so Allison can spend a good part of the day here with me.

It was great to have two weeks off prior to coming back up here. I got to be home for Cameron's birthday party.

The plan going forward is to do scans near the end of week 7. Based on the results of those scans we'll determine whether we continue with the IL2 treatment or consider some other alternatives.

I'm Home

2009-09-26T12:23:00.000-06:00

I am very glad to be home. I received very good care at HCI, but honestly I was very happy to leave to come home. I'll still deal with some of the side-effects for a couple more days. I should be back to feeling normal mid-week next week.

My heartfelt thanks goes out to all who helped with the kids, and to those who's thoughts and prayers were extended on our behalf.

Week 0.75

2009-09-24T11:35:00.001-06:00

We are approaching the end of week 1. Since treatment started Monday, I have received 10 doses. I talked with the doctor this morning and he thinks we'll do one more dose this afternoon, then another dose early tomorrow morning for a total of 12 doses. I'm hoping to be out of here sometime Friday afternoon, but wouldn't be surprised to stay here til Saturday.

Overall the drug has had some side effects. I have retained a lot of water. Gained in water weight so far around 15 lbs. Most of which appears to be in my face which is very puffy at the moment. I've also got some fluid in the lungs that has given me a bit of a cough. They tell me when I leave that they will give me medication to help drop the water back off. My appetite has been decent up until last night when I had about three bites of dinner, and breakfast this morning was two small cups of cranberry juice. So food has lost its appeal

No big surprise, but the schedule has been modified slightly. Instead of having one week off between cycles they are now going to give me two. So I will now spend Weeks 2 and 3 at home and check back in at HCI for week 4. That will also be the case for the second course, I will still start on Week 8 but will have two weeks off and will check back in for Week 11. As always this schedule is subject to change at any time.

Week 1

2009-09-20T21:23:00.000-06:00

So I have officially checked into Huntsman Cancer Institute (HCI) for treatment. Allison came up with me tonight and we arrived a little after 6 pm. Allison helped to get me situated and got the orientation and then went home to put the kids down for the night. I am very grateful to be able to receive treatment here in SLC so that Allison can still be with the kids.

Here in the near future I will be getting an IV for fluids and antibiotics tonight before the treatment starts tomorrow morning. I will likely spend most of the week here in the hospital for the administration of the treatment of the high dose IL2. We have been told that I'll likely be discharged Friday or Saturday of this week, depending on how things go. This then becomes Week 1.

Week 2 will be spent home again recovering and doing whatever I feel well enough to do.

Week 3 will be another round of high dose IL2 at HCI - checking in again on Sunday night and then hopefully out Friday or Saturday of that week.

I will then get a couple of weeks off. The current game plan (although experience tells me it is likely to change multiple times between now and then) is to do new scans at the end of Week 7. Depending on the results of those scans we will determine what the next step will be. For now we think it will be another course of two cycles of high dose IL2 starting with Week 8 at HCI, Week 9 at home, and Week 10 at HCI. Beyond that, what comes next is anybody's guess.

We are excited to be starting treatments after a bit of a roller coaster getting us to this point. We're grateful to be finally taking steps in the right direction.

We are extremely grateful to the many that have reached out in kindness to our family. And thanks to the thoughts and prayers from everybody we will make it through this.

Game Plan (for now)

2009-09-09T22:09:00.000-06:00

I am starting to think that the most difficult part of this whole thing is getting everything scheduled. I'm sure I'll feel differently once the treatment has started in earnest. But for now, we have had some challenges and frustrations in getting to the start line.

We have been bouncing phone calls and emails back and forth between Huntsman Cancer Institute (HCI) and MD Anderson Cancer Center (MDACC) for a couple of days now in an attempt to determine when we can finally get this going. And although I've learned in the last couple of days, this is subject to change at a moment's notice, it appears that we have a plan in place.

We are planning on checking into the ICU at HCI on Sunday September 20th where I will receive the high dose IL2. I will be there for most of the week, likely being released on Friday or Saturday. This will become week 1. Week 2 will be off and at home. Week 3 will be back into the ICU at HCI for another round of IL2. After that we'll reevaluate and determine how to proceed.

Thanks again to all of your great support, your thoughts and prayers are very appreciated. We know many of you have challenges you're facing right now and our thoughts and prayers go out to you.

Roller Coaster Ride

2009-09-05T20:23:00.000-06:00

Sooner or later this roller coaster is going to stop, but as of right now we don't know where or when.

We are trying to get in to receive the high dose IL2 drug treatment. This treatment requires that I spend a week in the ICU to receive the dosages. Both MD Anderson (MDACC) and Huntsman Cancer (HCI) can provide the treatment, but there are some variables we are trying to determine before resolve where and when we start the treatment. Right now we are trying to find out if we can start the treatment at MDACC possibly Wednesday the 9th of September or HCI on the 13th of September. We won't know if we can get into MDACC until Tuesday when everybody returns from the Labor Day weekend. And even the HCI 13th date has some maybes that we won't be able to resolve until later next week. So based on our track record this will change three more times between now and when we actually start treatment, but I think we are slowly closing in.

Zeroing In

2009-08-31T21:18:00.000-06:00

We had new scans done today that showed growth in the nodules in the lungs. Therefore they want to postpone the surgery to remove the lymph node so as to not delay treatment to try and combat the lung nodules. If we had the surgery done now, it would be two or three weeks before they could start me on a drug treatment while the wound healed and I recovered. So the current game plan (subject to change at a moment's notice) is to start me on a drug treatment to combat the lung nodules and do the surgery if needed at a later date.

We will hash out some more of the details out tomorrow with the physician and hopefully have a better defined approach then. But for now, although we are zeroing in on it, the final strategy is still a bit fuzzy.

Houston - Round 2

2009-08-18T20:49:00.005-06:00

To start off I would just like to send a thank you to everyone. We are continually amazed at how kind, generous and thoughtful people have been. We don't feel deserving of it, but it is very appreciated.

I have now had a discussion with Dr. Patel in Houston after the department team meeting. He has given us some options to consider. I have discussed those options with my family, Dr. Liz Hammond and Dr. Dave Gardner (great family friends that have helped me through this from day one), and my doctor here, Dr. Noyes.

Based on the recommendations from Houston and the above discussions, we've decided to go back to Houston for further treatment. There are still a few loose ends regarding the exact treatment that we're trying to tie up in the next couple of days, but nonetheless we're headed back to Houston. On Monday 8.31.09 I will meet with Dr. Patel and a surgeon to begin to formulate a game plan. There are a couple of questions that we won't have answered until shortly thereafter. Mainly they want to know if the tumor in my lymph node or the nodules in my lungs are growing. They will determine that by performing new CT and MRI scans directly after my visit with Dr. Patel and the surgeon. If they are not growing, they will go in and remove the cancerous lymph node and then monitor the lungs in the future to watch for future growth. At this point, we may or may not start a drug treatment called IL2. We'll have to wait and see.

The other option if the tumors are growing gets a little more complicated. They will want to harvest some tissue from the lymph node tumor. From this harvested tissue they can then separate the lymphocytes from the tissue. These lymphocytes are part of the immune system that fights off the cancer. They take the lymphocytes from the harvested tissue and grow them in the lab from thousands to something exponentially bigger (billions if I remember correctly). I'll come back later to what these are used for. The question will be if the tumor is growing, do they want to start me on a regimen of IL2 first before harvesting the tissue, or just go ahead and take the tissue. And that will be a game time decision made between us, Dr. Patel and the surgeon.

So why do they harvest and grow the lymphocytes? These lymphocytes become TIL (Tumor Infiltrating Lymphocytes). So in tandem with the IL2 drug treatment they start me on chemo to kill off all my other lymphocytes (lymphodepletion). This makes room for the TIL to come in. At some point they inject me with the TIL and it goes to work killing off the tumors. It doesn't work every time, but has shown some promising results.

From scenario one (remove lymph node monitor lungs) the lymphocytes will be harvested from the tissue and the TIL grown for possible future use if the nodules in the lungs grow.

Sorry for the lengthy explanation. Thanks again for your support.

MD Anderson

2009-08-12T14:41:00.002-06:00

I have now had the chance to sit down with the doctor at MD Anderson. It was an encouraging visit. We discussed my history and my current condition and then he went over a number of possible treatments that he might recommend. All of which have their pros and cons, but many appear to offer promising results. I won't bore you with the details of the various options.

At this point he is going to discuss my case with the rest of the melanoma department on Monday in their team meeting and get back to us by the middle of next week with what they would recommend. Depending on the treatment there is the possibility of administering at least some of the treatment in SLC which is encouraging.

When we know more next week we'll run another update.

I can't say enough thanks to everyone for the support and kindness that has been extended to our family. It is very appreciated!

Appointment

2009-08-07T16:26:00.001-06:00

I have an appointment in Houston with the Melanoma Medical Oncology Department at the MD Anderson Cancer Center on Wednesday the 12th. My dad has offered to go with me to be another set of ears as we visit with the physicians there.

We'll know more next week!

Update (Email) #3 - 08.05.09

2009-08-06T08:44:00.001-06:00

It kind of feels like every time I think we are going to zig, we zag. Right now we have changed plans a little bit. The original plan was to take part in the study with the doctor I have been seeing since my original surgery in '05. He is an excellent surgical oncologist, however it's not surgery that I need right now. It has been strongly recommended to me to see a medical oncologist that specializes in the treatment of melanoma. Since there are no melanoma specialists in Utah, I am trying to get in to see Dr. Patrick Hwu at the MD Anderson Cancer Center in Houston. I will get a consult there and try and determine what the best possible treatment for my situation will be. This will delay treatment temporarily, but in the long run we feel it's worthwhile to make sure we start in the right direction.

Right now I'm going through the process of getting an appointment there to see Dr. Hwu. It may take a couple of weeks to get in, so we're in holding pattern a bit longer before we know what we're doing and what the treatment will be.

I want to continue to thank everybody for the support that we've received and we know that with a lot of help we'll make it through this.

Update (Email) #2 - 08.03.09

2009-08-06T08:43:00.000-06:00

Thanks everyone for the encouragement and support we have received since I sent the last email. It was certainly not my intent to attract so much attention.

I talked to my doctor this afternoon and he has the results of the CT's and MRI I had last week. It turns out that the cancer has spread to my lungs. As per the doc there are several small nodules in the lung tissue. For the doctors in the house, hopefully that means something, for now I can't quantify how good or bad this is. My doctor would like to enroll me in a clinical trial of a new drug that uses your immune system to fight off the cancer. If I enroll in that study I will get randomly assigned one of two tracks. Track 1 being the drug treatment, Track 2 being chemotherapy. I will know tomorrow what the prescribed treatment will be. In the meantime I am trying to learn all I can about my options and what will be best for me and my situation.

Update (email) #1 - 07.23.09

2009-08-06T08:42:00.001-06:00

All -

I have some news that I wanted to pass on to everybody. I'm sorry to do it in an impersonal email, but I thought you would like to know.

Most of you know that in '05 I had a malignant melanoma (cancer), in the form of a mole, removed from my back. As part of that procedure they also removed some lymph nodes in my groin area. For the last month or so I have had a constant dull pain in the area the the lymph nodes were removed. At first I thought it was a pulled muscle. But after lingering for a couple of weeks and not getting any better, I thought it might have something to do with the lymph nodes. I went in to see my doc on Wednesday and he had an ultrasound done to look at the nodes. Turns out that one of them is about 3 cm in diameter. The doctor stuck me with a needle to get a tissue sample from the area and sent the sample off to the pathologist to look at. The pathology report came back positive for malignancy. So it appears my cancer is back.

"Where do I go from here?" is still a bit unknown. Next Thursday I have MRI and CT scans done to look for suspicious lesions elsewhere in my body. If those come back clean then the lymph node gets removed, and after that it sounds like there are a multitude of treatment options I may be in for. It sounds like chemo is a possibility. If the scans show something suspicious, then I don't know what happens yet. I'll get the results from the scans back next Friday.

First Post

2009-08-06T08:34:00.004-06:00

To start out, I would like to thank everyone for the overwhelming support we have received.

Up until now I have been sending out emails giving updates as we learn more. We are going to start using this blog to get the updates out.

I am going to start out by copying the first emails that I have sent out, so as to be able to tell the story from the beginning.