Trials and Options
Going into Tuesday we knew we'd have more answers, but they came with more decision points that made for a contentious day, and brought delays.
We'd been informed of trials from the first meetings with MD Anderson Oncologists, and there were two in particular that they suggested. Both trials required tests and qualifications. The first was for BRCA gene mutations, which if found could open pathways to non-IV chemo down the road. The second was a first course trial specific to locally advanced pancreatic cancer called Novacure Panova-3. First course means it only applies for those who have not been treated - which is us.
The BRCA tests came back negative, which is good in the sense that Melisa doesn't have the mutation and therefore hasn't passed it on the the kids. It's also a positive indicator for her siblings, though we cautioned everyone and have tried to raise awareness of the gene. Melisa noted that while she doesn't have the cancer gene she still has the "Gene gene" from her Dad. Anyone who knew Gene Asay will agree this should prove a valuable asset in the fight against cancer, or, anything really. As Taylor our nephew reminded us last week, 'That Asay blood is strong!'
The second Novacure qualification check came back as positive, meaning we qualified, and had a decision point.
Our Oncologist had directed last week that there were two chemo options we could pursue as part of the 'standard of care', being Folfirinox or Gemcitabine ('Gem' here). Folfirinox was positioned as the recommended solution due to Melisa's age and health. Though it was the strongest combination of drugs of the two options, she would likely handle it well and it was the most aggressive. Gem was positioned as what might be given to older patients or those who couldn't tolerate Folfirinox. We made the decision to go with Folfirinox last week.
The trial for panova-3 pairs a new form of EM waves as additional to chemo but the chemo is Gem. The trial is also setup where if you enter the trail, you have a 50 50 chance of getting device or being part of the control group who only gets chemo. In the case of the later, we'd then be stuck for 8 to 10 weeks of using what was previously described as "for older people and not what we'd recommend" in Gem vs. Folfurinox - or such was our perception given prior conversation.
After speaking to our family and doing some soul searching we decided to try to pursue the panova-3 / Gem trial. It'll take a few more days to find out if we get the device or become part of the control group and simply start Gemcitabine chemo. We backed off Folfirinox largely because Melisa isn't stage 4 and her CA-19 9 count has not changed since 2/22/22. This we see as a good sign, and Melisa has said she'd rather have fewer drugs of possible. We also go once a week to chemo and don't have a pump to remove after 48 hours like we would with Folfirinox.
So now, we wait again, to see if we get the EM kit. Reason is, if we do, we have to have the kit with a few days of starting chemo. Kit availability and training on use then drives the schedule. Not so bad, as it gives Melisa's port placement time to heal.
Lastly, I'll add that I made my first mistake today. We had a kit that requires a blood draw that I forgot to pass to the lab as Melisa went in. This meant she had to get poked twice for blood, and that sucked for us both.
As a caregiver, there's alot to remember and I'm constantly reminded of how much time/effort others in our family have given to loved ones who fought illness and disease over the years. Hats off to you all - you made it look easy, and I'm working on it. 💪
Tim