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.
Wednesday, October 13, 2010
Wednesday, October 6, 2010
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...
Posted by Allison at 10:25 PM
Wednesday, September 1, 2010
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!
Posted by Ben at 1:48 PM
Sunday, July 18, 2010
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.
Posted by Ben at 10:43 PM
Friday, July 9, 2010
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 21st 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 16th 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.
Posted by Ben at 8:11 AM
Sunday, June 6, 2010
MY STARS! THUNDER AND LIGHTNING! RATS AND BLUE BLAZES! SUFFERING CATS! BLISTERING HOP TOADS! ZOUNDS AND GADZOOKS!
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.
Posted by Ben at 9:17 PM
Tuesday, May 18, 2010
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.
Posted by Ben at 10:22 PM
Thursday, April 1, 2010
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.
Posted by Ben at 10:23 PM
Tuesday, March 30, 2010
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.
Posted by Ben at 11:53 AM
Thursday, February 25, 2010
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.
Posted by Ben at 8:33 PM
Saturday, February 6, 2010
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.
Posted by Ben at 9:40 PM
Wednesday, January 13, 2010
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.
Posted by Ben at 8:33 PM