Archive for September, 2017


Chop, chop!

September 1, 2017

StartChoppinWell, wouldn’t you know it, while on chemo the little bastard returned in the same area in less than a year. Forgive my french, but “whah ze fuk?!” Persistent little bugger ain’t he? Guess it’s time to start choppin’.

Dr. Taylor, my wonderful previous oncologist, retired on August 01 and we met with my new neuro-oncologist, Dr. Salacz (“Shallots”) on Wednesday.

It’s been a mixed tumor from the start and we assumed only pieces were recurring, but this time it was the exact same thing as less than a year ago and it seems the pathology results of my tumor are more chromosomally complex than previously thought.


  1. IDH mutation and 1P/19Q genetic co-deletion is typically associated with oligodendroglioma. If someone has this mutation and co-deletion, it makes the cancer very susceptible to chemo treatment making for a better prognosis. I have both this IDH mutation and co-deletion. That said it makes it odd that the tumor has grown back so quickly.
  2. ATRX loss, usually associated with astrocytomas, is also present in the structure of my tumor cells.
  3. Each individual cancer cell is staining for both oligodendroglioma and astrocytoma.
  4. This makes it a rare, unusual tumor that may be more difficult to diagnose and treat as one chemo treatment may work on one type of tumor, but less so on the other.


Due to the traitor’s frequent recurrence, with relatively small growth in size, he’s making himself difficult to classify in to a Grade and treat. Depending on how you look at the data, the more frequent recurrence is associated with a Grade 4 glioblastoma multiform (GBM), but the slow speed of growth lends itself to a Grade 3 anaplastic astrocytoma. End result, we are teetering between the two at this time and unfortunately headed in the direction of that dirty, dirty, Grade 4 GBM. Though the Grade is on the line Dr. Salacz asked if we would allow him to package “he who will not be named”* as a Grade 4 GBM to get me qualified for clinical trials and better, more aggressive treatment. We have agreed, assuming that it’s better to get in a little early than a little late.


There’s also the impression that although it’s been a rare tumor the entire time, it may have only been treated with standard care procedures. Remember my homey Francis Bacon’s quote, “ipsa scientia potestas est” (‘knowledge itself is power’) from a previous post? Dr. Salacz has currently given us six treatment options, but rather than just throwing another alternative at it we agreed to allow, at our own expense, Dr. Salacz to send the biopsy to a company called Caris that will do genetic profiling on the molecular structure. He wants to learn as much as possible before we commit to a treatment. Sending off these labs may very well help us identify genetic markers that may be an “Achilles Heel” and possibly enable us to specifically target an appropriate genetic and chromosomal treatment to stave off future growth. The caveat? There is still a chance they won’t find any such markers. While not a gambler, shooting craps with your life is worth it when the benefits are high enough. The labs have been sent off and now we’re waiting around 10-14 days to get these results back. Blargh.


In the meantime, my doctor has recommended we seek a second opinion before the results come back from Caris. In a rare case such as mine, he felt very comfortable having additional brain tumor experts take a look at the pathology and use that information to help determine our next steps. Having done our research we chose not only a top 5 NCI Cancer Institute, but a top 5 brain cancer research center located at the University of Washington Medical Center and asked for a referral. Dr. Salacz has sent in the referral. As soon as we can get an appointment, we have to book flights, hotels, transportation…all that jazz… and now we’re just sitting here waiting to hear back. Definition of nerve-wracking.


Just to add to the fun the second opinion has to be completed prior to our follow-up appointment on 9/13. Chop! Chop! Right?!


*My tumor previously had a name, and therefore CAN be named, but he’s been pissing me off lately, so NO name for him. NO name! He is now “He who WILL not be named.”

**It seems strange that one has to wait for clinical trials, but due to the uncertainty of their nature waiting for higher grades makes sense. Click on any hyperlinks to learn more.

***We are only writing this from notes we took by hand at the doctor’s office so there may be corrections as new information comes in. I’ll try to keep everyone up-to-date!

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