Terrible Day

 June 2-

Dad's PET scan was yesterday and they already called and made an appointment for today, so that isn't promising.  I guess mom and dad saw the results in mychart and the doctor called them so they were a little more prepared than me.  But I was not ready to hear those results.  The radiation oncologist, Dr. Thorpe came in and went through the PET results and showed us all the areas that lit up.  It felt like the Merkel cell was everywhere.  His liver was completely full, more lymph nodes were positive, under his clavicle, the exact area that he just had cells removed from surgery 2ish months ago, his spine, hips, and pelvis. He let us know, that right now radiation wasn't needed, but if he started to get bone pain then radiation would help with that.  He said non curative and I really couldn't handle hearing that about my dad. Next the medical oncologist, Dr. Tella, stepped in and gave us his thoughts.  He did say that Merkel Cell was very  aggressive, but he wasn't expecting it to be this widespread after just a few months (his prior PET scan was 3 months ago).  Immunotherapy is the only thing to really combat the Merkel cell, but it takes time for your body to build up the cells to fight it so we need to start with chemotherapy.  Chemotherapy works in 66% of Merkel Cell patients to shrink or at least keep the cells from continuing to grow.  So in essence it will slow things down to buy time for the immunotherapy.  Chemo targets rapidly dividing cells so Merkel is pretty sensitive to it initially, but Merkel is also really smart and within 3 months can become resistant to it.  Immunotherapy works to boost the bodies own immune system to fight the tumor cells.  Healthy normal tissues have a "checkpoint" that lets the immune system know they are good cells.  Merkel cell produces large amounts of these same "checkpoints" so the immune system sees them as safe and the Merkel cell can hid and grow. Immunotherapy would target these "checkpoints" and turn them off so the immune system would recognize the merkel cells as bad cells and would kill them.

So, our new plan is to get a port do make all these infusions happen.  Because dad had his lymph nodes removed, they don't want to use that arm for blood draws or infusions (it increases the likely hood of lymphedema and infection). Currently they have to use his foot for blood draws (which is terribly painful) so the port would just make everything run a little smoother.

Next would be 4 rounds of chemotherapy.  That looks like this:  

Day 1 would be a 2 chemo cocktail (Vepesid and Carbo). The infusion lasts about 4 hours plus a pre infusion blood draw for a CBC.

Day 2 and 3 would be Vepesid only.  Quicker infusion of maybe 2 hours

Day 4 is an injection of Flynetra that will increase WBC to prevent infection.

Then he would get a 2 week break before the next round.  There will also be a shot in there somewhere to help increase bone density (although that might end up being another infusion depending on what insurance agrees to).  After 2 rounds they would repeat the PET scan to determine the effectiveness of the chemo.  Also, during this time they will send a tissue sample to a company called Tempus.  They use special testing to identify biomarkers, mutations, and what immunotherapy would be best.  It takes 4 weeks to complete the testing.

So, that's where we are at.  If he doesn't do anything, at the rate the cancer is spreading, it would take over in 3 months.  With the treatment we are hoping to get to Christmas.  That still makes me cry just thinking about it.  My dad is my go to and it just doesn't seem like an option for him to not be there.  I feel like I'm too young to not have him and then I think of Jonathan losing his dad at 19 and I can't even comprehend that.  I cry a lot, mainly on my car rides home.  It's a lot to process and I look at my other patients who are younger but seem so much older.  It's a blessing and a curse to work in oncology, but I get to go to all the appointments and check on him during chemo sessions, and he has a whole team that doesn't want to let me down!!