I hope everybody had a great Thanksgiving. For everyone who posted or sent texts filled with pumpkin pie, thank you! Some of them made me laugh out loud. You all are great.
This morning, we went in to have Jeremy’s other lung drained of fluid and we found out that he could do the abdomen too instead of having to go in tomorrow for that. Holy cow, he had a lot of fluid. Everything went well and he came home to eat and then go take a nap. We were up pretty early to be there at 7 am. Thankfully Mom and Dad took the kids last night and Mom made sure they got to school today. Well the older two that is. There was lots of jumping around and rearranging schedules by my sister and dad to stay home with Ari who started getting sick yesterday. She’ll stay an extra night to keep the germs away from Jeremy. Eli had it last week and spent a couple days quarantined to unused side of my parents’ house. I got a phone call on Saturday with Eli happily exclaiming, “Nona let me out of my room!” 😂 In her defense, I told her to keep him there. I can’t have my village all coming down with sickness.
On the way home, we talked to the oncologist’s nurse and she informed us that the biopsy for immunotherapy came back inconclusive. We now need Jeremy to go in and have a biopsy done on a mass he has in his chest cavity.
I have been getting a lot of questions and frustration from people regarding why this is taking so long to find out if Jeremy can do immunotherapy. Trust me, I am right there with you, but I figured I should give more of an explanation so everyone can understand why. When Jeremy went into the hospital, he was not officially diagnosed with cancer because they couldn’t find the cancer, only evidence that a cancer had metastasized from some location by multiple lesions found on the CT scan. They felt that it was coming from his digestive track but they could not see where it was. So they did a bone marrow biopsy while at the same time getting some tissue from one of the lesions… lesions (abnormal tissue), not a mass. His oncologist came to see him in the hospital even though he was not officially her patient yet. She wanted to push for him to stay and have an endoscopy done the next day because she felt that it was coming from his upper GI. Jeremy wanted to go home and since he had an endoscopy scheduled just two days later, she was ok with it, but wanted to see him at her office the next day. The bone and lesion biopsy report came back by that appointment and they were unable to pinpoint by the cells where it came from but there was enough to indicate that it did come from somewhere in the upper GI so at least we knew we were on the right track. She knew the gastroenterologist and called him to ask him to call her after the procedure so she could get the ball rolling on starting treatment immediately. She had the bone marrow and lesion tissue sent off to see if there were any markers for immunotherapy being an option even before his endoscopy and to see if he would qualify for any clinical trials. This test takes 3-4 weeks to run. No CSI turn around test results in real life. She said she was hoping that the gastrenterologist would be able to get a big sample of a tumor so they could get a good reading to find any of those markers. The next day, after the procedure, the gastroenterologist told me that Jeremy did not have any tumors, but by the state of his stomach he was pretty sure it was stomach cancer. He also said the type that Jeremy has is one that is not easily diagnosed and if they go in too soon that sometimes they miss the cancer because of how the cancer manifests itself. He did say that he got enough tissue to confirm what type of cancer it was, but he couldn’t get a large sample because every time he tried to Jeremy would bleed. We were crossing our fingers, hoping it was enough to get a reading of those markers. Regardless, the biopsy from the endoscopy did confirm that he has stomach cancer.
When the bone marrow biopsy came back saying there was not enough to get a reading, they sent the stomach sample in but again it wasn’t enough. Only a mass would really give them the amount they needed. The blood serum test was a last resort to see if they could find any markers. This is not the most reliable way to find those markers but the oncologist was trying to find the information any way she could. That came back today saying it was inconclusive. We would have hit a dead end today with no other options if not for a large enough mass showing up on Jeremy’s CT scan right before Thanksgiving. Now they will be able to go in and get enough diseased tissue to finally let us know if immunotherapy is an option or if he’s a match to a clinical trial.
I asked the oncologist the other day why we just couldn’t just go to immunotherapy as a first line of treatment and her answer was because it hasn’t been approved yet based on studies over time. From what I have read, immunotherapy was only just approved by the FDA in September of 2017 for advanced gastric cancers, after chemo is proven ineffective. I asked her so in 20 years that answer may be different based on studies and she couldn’t give me a yes or a no but a maybe. So we are in a holding pattern based on what is and is not allowed in the oncology and medical world. There is no guarantee that immunotherapy will work for him but right now I feel like we are battling this disease with a fly swatter and not a sword or gun or whatever destructive weapon you choose…you get my point.
So that is why it is taking so long for us to get an answer on immunotherapy. Three factors are holding Jeremy up from knowing if he can do immunotherapy: the type of cancer he has and how it has manifested itself, how long it takes to run the tests, and the medical and insurance systems.
Jeremy’s biopsy is scheduled for Friday and we will talk more to the oncologist this Wednesday about things. Waiting is hard and I’m not sure if we have any options of speeding things up, though I am pursuing finding out if there is anything we can do in terms of that. In the meantime, we are going to try to enjoy the holiday season as best we can and be grateful that we are all together.
PS- here is a good article that explains a bit about gastric cancers and immunotherapy and what markers are needed to proceed with it: https://blog.dana-farber.org/insight/2017/12/stomach-cancer-immunotherapy-targeted-therapy-changing-treatment/
