Past and future

Family

Christian here.  It has been a while since I’ve made a guest post.   I’ve had a couple brief posts on Facebook, but not a proper blog post in some time.

So the most recent CT scan on March 4^th showed some tumor growth in the lungs after this 4^th set of drugs.  There was enough to warrant changing the approach.  There are a couple more chemos in the war chest, but the good news is that my doctor knows people….He quickly made the connection with a doctor at University of Chicago who does a lot of early clinical trial work, and I’ve been accepted into a Phase 1 clinical trial for a “TRAIL” (not trial) receptor drug, more on that later.

Just as a refresh; the malignancy is called Leiomyosarcoma, a subset of Soft Tissue Sarcoma, which is pretty rare.  Less than 1% of all cancers are Soft Tissue Sarcoma, and less than a tenth of that 1% is Leiomyosarcoma, and yet a further subset with the main tumor originating in the abdominal cavity.  

Generally speaking, Leiomyosarcoma does not respond exceptionally well to chemotherapy like some other cancers (was really hoping for lymphoma or testicular - strange wish, eh?).  Additionally, they don’t know what causes this type of cancer, so that was kind of reassuring it wasn’t too much Budweiser and Jim Beam in college.

So the primary was in the abdomen, with metastases in the lungs, liver, and spine.  So it’s not “lung cancer”, “liver cancer”, “bone cancer”…..this is still Leiomyosarcoma that has spread to distant organs….thus the “stage 4”.

There is an ongoing sarcoma paper by two sarcoma doctors from the Boston facility (Dana Farber/Harvard Cancer Center) I visited last September; here is what they say:

“The majority of patients who develop metastatic STS (Soft Tissue Sarcoma) are incurable,”….. I plan to be in the minority!

 “The median survival after development of distant metastases is 11 to 15 months, and 20 to 25 percent of patients are still alive at two to three years.”  See……I’ve made it in the minority already at 3 years in Novembr!  I was diagnosed on November 21, 2012 after removal of the 17 cm, 8 pound mass, including left kidney, and was immediately Stage 4 with lung and spine mets.  Since then, we have ID’ed a few liver mets.

The most interesting, and best part, in my view:  “The prognostic factors for more prolonged survival differ from those predicting response to chemotherapy, suggesting that survival is more dependent upon disease biology rather than solely on treatment-associated considerations.”  So for me, I tend to consider my disease less aggressive, and that prolonged survival is supported more by this and less by the drug treatments.  It also helps that I am relatively young and in otherwise good health.  I don’t have other medical issues that the cancer or cancer treatments have exacerbated.

Two years ago, the abdominal tumor was guessed as 30 years old by my oncologist.  Additionally, he guessed the lung mets were 5 years old.  As such, the statistic above about the modest survival after distant metastasis seems to put me as an outlier.   I see this as great!

So for those who like the detail:

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­9/12:  No symptoms, baseline chest x-Ray from primary care physician due to a bit of walking pneumonia, something to watch in the lung, take a CT in 2 months.

10/12:  Abdominal and chest CT reveal large mass in the abdominal cavity, along with bilateral lung nodules.  Referred to oncologist.

11/12:  17cm (8 lb.) retroperitoneal mass (football) removed with left kidney and adrenal.  Cancer was thought to be renal or adrenal prior to removal, outside chance of sarcoma.  Tumor was encapsulated and was thought to be removed cleanly.

11/12:  Grade 2 LMS, <1/10 hpf, ~40 mets spread between both lungs from 2mm to 1.2cm, most small; 1 spinal met; No symptoms at 175 lb.

1/13:  Begin chemotherapy Phase 3 trial: TH302 (study drug) + Doxorubicin (“Red Devil” – often used for breast cancer).  Second opinion @ U of Michigan confirmed approach.

5/13:  6 cycles TH302+Dox complete, continue with maintenance - completed 6 additional cycles TH302.

10/13:  Half of the lung lesions beginning to grow. Stop TH302 maintenance.  Start Gemcitabine/Taxotere chemotherapy.

12/13:  4 cycles Gem/Tax, most all lesions stable or shrinking, 4 bigger ones growing. Time for lung surgery.

2/14:  Left side lung surgery (Thoracotomy), 16 sections removed (24/10 hpf on the most PET active lesion), all sections LMS.  Removed about ¼ of the lung.  Oncologist thought we had most lesions under control and expected high level of tumor necrosis.  Disappointingly, only ~15% necrotic in aggregate, and many additional small lesions within the larger pieces of removed tissue.  Oncologist wants more systematic treatment prior to another surgery.  We had originally planned for right side thoracotomy after recovery from left side.

3/14:  Start “targeted therapy” Votrient.  Votrient is supposed to disrupt the blood supply to tumors, as opposed to chemotherapy, which is supposed to kill rapidly dividing cells…Votrient turned my hair and skin white.  Votrient turns off your pigment “switch” in your skin and hair.  It was certainly a different look for someone not yet 40.

9/14:  Consult with Dana Farber/Harvard Cancer Center for future studies that may not be available at IU.

12/14:  CT shows growth, off Votrient.  Start Dacarbazine+Rapamycin chemotherapy.  Consult with the Thoracic surgeon indicates that surgery to get all the disease out of the right lung, paired with the ¾ left lung could leave me a pulmonary cripple.  So we have to stick to drugs for now.

3/15:  Rounds 3 and 4 of Dacarbazine+Rapamycin complete.  CT shows enough growth in largest lung lesions to consider disease progressive.

4/15:  Enrolled in a Phase 1 trial at The University of Chicago, begin 7-Apr.

I was originally going to be involved in an immunotherapy trial with two different drugs.  Well, turns out, I could only have 3 previous treatments, but I’ve had 4.  Disappointing, however my local oncologist is encouraged by this alternate option of a “Trail Receptor” trial, so we will try it out as opposed to going with the next chemo that is pretty brutal and requires an in-patient hospital stay of a few days every time you get the drug.

Tumor Necrosis Factor

Related

Apoptosis

Inducing

Ligand

This drug is a cytokine that is supposed to bond to tumor death receptors.  This drug has been tried on about 10 other people, but no one with my disease, so we will see.

How do I feel?  Pretty good.  I'm not running any marathons, but I don't have any limitations otherwise.  I have an occasional back/side pain where one lung met feels like it rubs the pleural cavity, but that is occasional.  Hopefully we keep working drugs to shrink this stuff.

So 2014 was a pretty great year with a lot of fun events with friends and family.  Keri has covered a lot of these in the past, but here are some others:

Random:  I borrowed a $20 from a fraternity brother homecoming night back at Purdue, not long after graduating.  I spent $30 to mail him $20 in pennies.  Through 6 moves and 15 years, he kept the same pennies and paid me my $20 in fantasy football winnings.  That’s dedication to a cause.  You will see these again, Smokin Joe.

 

Annual hometown guys spring golf trip.  Tennessee last year and this year.  Savannah and Charleston years prior.

 

Keri and I made a second-annual Key West trip, sort of a 14th anniversary trip.  August was hot, but we had fun.  Sporting the white hair.

Third year for the Bristol night race with dad.

 

Keri and I went to Boston in September to see a doctor there.  Spent a couple days seeing the sights.  The USS Constitution is pretty neat.

Camping with the men and boys of our small group.  Luke is quite and outdoorsman.

Quite  few work trips in 2014 to the SF bay area and New England.  I was able to see family, a college friend, and take in one of the final Giants games on their way to winning the World Series.

Second annual fall visit to Orlando on a college guys golf trip.

My sister Brittany was a Rockette in NYC.  I took Lily to see her in November and then Keri in December.  I am the superfan as I saw the show 4 times......Brittany is still in NYC working as a Rockette - this is the first year of a new Spring show.

Father-Daughter dance.  White hair is gone!

Getting pumped for my spring golf trip to Tennessee next week.  Tune in again after the next CT scan.  Let's pray for shrinkage people!

God bless - Christian