June 8 2018
The not so great news was scary at first, as told to us by our surgeon who didn’t seem too concerned but knowing that our goal was 90%... hearing 50% sent our hearts to our stomachs. Today we went back to Oncology on the third floor of Randall to get ready for chemo, but first we discussed the pathology results.
As previously discussed, they take the full tumor and affected femur out of Atticus’ body. Along with that they take some tissue - muscle surrounding the bone which is called the margin. They want “good margins” so anything touching the tumor and the cancer cells would be gone, out of his body.
They even resected the biopsy scar as they didn’t want any chance of leftover cancer cells that may have been in the biopsy scar left over. The surgical intern joked that they did a really expensive plastic surgery for free to Atticus. Atticus snarked back “well, I’m not so sure about that, you just traded for a bigger scar!”
Once the bone and tumor is out, they send it to pathology and they “slice it up like a loaf of bread” and inspect it and do all the things to find out how well the tumor and the cancer responded to the chemotherapy. They are looking for necrosis- death of the tumor and cancer. Back in January when Atticus was first diagnosed, they laid out a plan for us: 10 weeks in chemo. Limb Salvage Surgery. Find out pathology.
Good Responder = 90% Necrosis: 19 more weeks of chemo
Poor Responder = less than 90% Necrosis: a longer chemo treatment with more chemo meds added, up to 60 weeks.
When I heard he was a poor responder, my mind immediately recalled that plan and I was heartbroken to think we have another year or so in chemo. What would we do about high school? How bad is this going to actually be? What’s happening?
Fortunately, more research is coming out to show that the long plan for poor responders only added more toxicity and didn’t really do much for killing off the cancer.
The other issue was margins. The surgeon has to make a decision in surgery to preserve tissue and veins and nerves, so there was one spot near the tumor where the margin was a little closer than what they would prefer, but it also helped preserve the function of the leg. It also means that the osteosarcoma may have a higher chance of returning.
The plan now is to continue on with the ongoing chemotherapy treatment as if he was a good responder. This will be our last cisplatin treatment which is awesome because cisplatin is the WORST. Doxorubicin will now be daytime treatments on the third floor and methotrexate will continue to be inpatient treatments on the fourth floor, they are guessing early to mid September he will be done with chemo. The reason they continue on with chemo is to make sure any loose cancer cells that may be floating about in his body are dead gone and won’t be reproducing.
On the scans, they have seen nodules in his lungs, they are very small and the plan was to just keep watch on them. Before we found out the pathology on the tumor itself, the nodules on the follow up scans hadn’t changed, so they thought it a good sign, as in, they didn’t grow or shrink, so they most likely aren’t cancer. Since he had 50% kill rate on his tumor, now they aren’t so sure about those nodules, as maybe they are cancerous and just didn’t respond to the chemo. The tumor board met and decided they will continue to just keep a a watch on them. They are too small to try to find in surgery. So it’s a watch and wait on those.
Our oncologist has sent the pathology (pieces of the tumor) to a place called Foundation Medicine. This is now beyond my scope of understanding so if you are interested in genomes and targeted therapies go check out their website. I don’t have the bandwidth at this point to read about it. But hopefully, they will be able to figure out some extra medicines that will work on Atticus’ particular cancer in his own body.
They first told us we will be seeing the oncologists for at least ten years. Getting scans, follow ups and all that fun stuff. She then told us Friday that no, it will be the rest of his life. The good news is they will be able to spot any cancer much faster since he will be seeing an oncologist and getting scans for the rest of his life.
We are currently still in Randall Children’s from his Dox/Cisplatin chemo. It’s not going well at all, he’s very ill, and still in quite a bit of pain from his surgery, especially nerve pain in his foot that they are trying to get under control.
Fortunately, however, it was his last dose of cisplatin! We will be happy if we never have to see cisplatin ever again. Remembering from the calendar that I made - he has had doxorubicin and cisplatin together, two days in a row, inpatient. Now, there will be no cisplatin and his doxorubicin infusions will be in clinic for two days in a row, but not inpatient! So we are starting to see some light at the end of this dark tunnel.