Second Opinion

Mary and I just got back from Ann Arbor for our consult with the University of Michigan Cancer Center. It was a great trip all around and we are feeling particularly positive about our "second opinion" and some new opportunities for future treatment.  And to top that off, I just checked the pond in my yard and discovered that at least one goldfish has successfully wintered over under the ice.  And where there is one, there is bound to be others.

Our consult was Tuesday at 10am and rather than get up super early for a cross-state commute, we accepted an invitation from Mark and Susan Pearlman to come down the night before, have dinner, sleep over, and make it a leisurely 10 minute ride to the hospital after a nice homemade breakfast. Mark is a doctor at the very same Cancer Center and more importantly, he and Susan are the parents of Zack Pearlman, a dear friend of Alice in Los Angeles.  We quickly discovered that the whole Pearlman family loves Alice and were willing to extend that respect to Mary and I.  It made all the difference.  We were super comfortable in their home and with their company.  We ate good food, drank good wine, visited with Zack's Sister Allison and her spouse, Leanne (also friends of Alice) and had great conversation until bedtime.

Mark cancelled his morning meeting so he could make us omelets from the fresh eggs of their backyard chickens before heading off for work.  He advised us to get to our appointment early but to be prepared to wait.  We socialized with Susan and made the decision to come back to the house after my appointment to pack up. Well, we did not get there early but rather right on time. And no sooner than I finished a one-sheet questionnaire, my name was called and they took my vitals and ushered me into an examination room.  

We waited hardly a minute before we were welcomed by Dr. Manali Bhave (hope I got that name spelled right) who is in training with the center's senior esophageal cancer specialist, Dr Susan Urba. She took us through my cancer history, fixing some mistakes in the record and ultimately confirming that the choices that my doctors in Grand Rapids were making were right in line with what they would have recommended. Dr. Bhave possessed the gift of being able to type notes while she looked over her shoulder and talked to me. U of M had consulted on my case before and had a record of my cancer DNA which was compatible with successful trials with the drug, Ramucirumab, Dr. Krajewski was considering. After discussing options, she left and came back with Dr. Urba.

Dr. Urba started out by acknowledging that she had received a note from Dr. Pearlman mentioning our friendship and to give me her best care.  Of course she would do that anyway but it felt good to have the connection made.  She concurred with all the stuff that Dr. Mhave told us, recommending that we move forward with the recently approved cancer drug as a companion to the drug Paclitaxel that was started last week and went on to talk about getting me into a "phase 1" trial.  A phase 1 trial can only happen at a University hospital and it involves testing promising new treatments that are not yet approved.  This could happen only depending on open slots and after this current regimen is finished.  The nice thing about it is that it leaves me with more options should this current treatment be ineffective plus the opportunity to be part of scientific discovery for future patients with my cancer.  She thought my overall good health would be a factor in getting me into a study.  She said that someone who had lived three years with this cancer and that much chemotherapy she would normally expect to be brought in in a wheelchair.

We left feeling very good about future options.

We went back to the Pearlman home and had coffee with Susan.  We wanted to take her out for lunch but she was waiting for a delivery and had to pass.  We said our goodbyes and found a terrific Korean restaurant, Tomukun, right next to the Michigan Theater. And then it was back on the road. Two and a half hours and we were home.

Tofu Stew special with all the added "taste" extras

Tomorrow morning (Wednesday) I will see Dr. Krajewski and take on my second dose of Paclitaxel.  The new drug, Ramucirumab, will need to be approved by the insurance company so that will likely start next week.  I'm also hoping to get a new pain drug as Ibuprofen (which works great) is not a good pairing for gastrointestinal complications.  Unfortunately for the first time I am experiencing pain in the liver as one of my symptoms.

And winter seems to be waning so soon I can start getting a bit more exercise and revisit my fish feeding ritual.

Turning the page

  It was not unexpected.  I told my doctor 2 months ago that something was happening down in my liver region.  The body knows.

Doctors are pretty easy to read too.  When Dr. Krajewski came into the room he said, “Well let’s start with the labs”, implying that good news would be first.  But he did get around to the results of the scans and they revealed what I had expected.  The regimen of chemotherapy that I have been on for nearly a year was no longer working.  The primary tumor on the liver was nearly double in size since the last scan in November.  And there was some other evidence of “worsening metastases” in that region and around the abdomen.

The thing about chemo when you are employing palliative therapy is that you keep trying new drugs until they no longer work.  Dr. K had a list of the stuff that was known to be effective on my kind of cancer and he had crossed off all the drugs that I had burned through over the 3 years.  There were still a few left and he was recommending an old drug, Paclitaxel, along with a new (approved just last year) companion drug called Ramucirumab.  Because of the newness and some the side effects of the latter, he recommended that I get a second opinion from the University of Michigan Hospital who would have more experience with patients on this drug.

So we are going to start next week with Paclitaxel and if the geniuses at U of M think it is right for me, we’ll add the Ramucirumab in about 3 weeks.

I’ve really liked that previous regimen because the side effects were so tolerable.  There is no telling which of the side effects will come into play with the new drugs but it looks like losing my hair is a common one.  I can live with that.  I just hope it does not affect the taste of food.  I would be sad to lose that again.

As I said, it was not unexpected so I am not at all devastated.  I am grateful that I still look healthy and feel pretty damn good.  I am also in no hurry for the spring or disappointed in cold temperatures.  It is all good and the warm sunny days will come, regardless.

3 years

When I woke up this morning I got to thinking that it was March already.  I knew that it was sometime in March 2012 when I initially got the call from Dr. Lown that the biopsy from my upper endoscopy had come back positive for esophageal cancer.  I just looked back at my calendar and it was March 2 of that year when I received that call.  So as of today it has been 3 years.

Stage 4 esophageal cancer has a reputation for killing people fast.  Hardly anyone with this diagnosis lasts 5 years.  Most don’t last even 1 year.  I am incredibly grateful that I have reached this milestone and still feel very much alive. My body has served me well.

One of my favorite stories (that I probably have already told in this blog somewhere) is how a simple screw-up in an early medical procedure saved or at least extended my life.

When I was first diagnosed as having the adenocarcinoma cells in my esophagus near the junction of my stomach, there was initial concern regarding staging, as early stages are survivable. Unfortunately, most cases are discovered late because by the time you typically experience symptoms, the disease has already spread. Still, there was hope that we had discovered it in an early stage.  A CT/PET scan would tell the story.

After the scan, I received the bad news that there were hot spots in both my liver and in the center of my chest, in the mediastinum area. This could indicate stage 4.  But to be sure that these hot spots were cancer, they would need to be biopsied.  The liver biopsy was done first since it was relative easy to get to… just a poke through soft tissue.  I was told that if that biopsy revealed esophageal cancer cells, that that would indicate metastases and I would be considered stage 4 and they would not bother to biopsy the spot in my chest, as that would require a thoracic surgery and there was no point to put me through that because it would not change my diagnosis.

Well that liver biopsy came back negative for cancer and the thoracic surgery, using the minimally invasive daVinci robot, was scheduled.  The doctor was hopeful that the hot spot in my chest would also be negative for esophageal cancer as that would indicate a lower stage cancer and I would be a candidate for esophagectomy; a major surgery but also the gold standard for surviving this disease.  They would not perform an esophagectomy on a stage 4 patient because it was considered too invasive to put someone through who had perhaps only months to live anyway.

So it was a weird mixed blessing when the results of the thoracic biopsy came back negative for esophageal cancer but positive for a particularly aggressive strain of non-Hodgkins lymphoma.  The good news being that the lymphoma was deadly but curable through chemotherapy and stem cell transplant, and the lack of adenocarcinoma cells meant that my esophageal cancer had not metastasized, meaning I was early stage for that cancer, and was therefore operable.  I had the operation to remove my esophagus days later and a plan was set in place to put me through the chemo to kill any lymphoma left in my body.

But then the other shoe dropped.  The guy who had done the liver biopsy was looking back at reports and decided that he was not 100% sure that the biopsy he had done had actually sampled the concerning spot.  He asked to repeat the liver biopsy.  This was done and this time it came back positive for esophageal cancer.  I was now considered stage 4.

Bad news, right?  But here’s the thing that occurred to me later.  If that first biopsy had not been screwed up and had come back positive, they would not have gone in to test that spot in my chest.  They would never have discovered the fast-growing, deadly lymphoma there and untreated, it would have quickly killed me.  As it turned out, the doctor was able to cut out the entire lymph node with wide margins during that daVinci surgery and evidently he got it all, as it has not returned.  I received the life extending esophagectomy and because of the eventual stage 4 prognosis I was not put through the grueling stem cell transplant rigmarole to cure the lymphoma.  And here I am 3 years later, having a life beyond expectation.

Tomorrow I get the results of last Friday’s quarterly CT scan.  We’ll see if my weird luck continues.