Treatment Plan- October 2017

October 4, 2017

A week ago I shared with you all the news that Ben's first line of chemotherapy is no longer working. A lot has happened since then. Here is the latest update and what we went through today.

Ben has been experiencing increasing and debilitating headaches. His oncologist booked a CT of his head, which was done today. Ben was at the hospital for 7am this morning. Unfortunately, I was not able to go with him right away as I had to make sure everything at home was running smoothly with the girls. Another unfortunate thing was that Ben was really not feeling well. He actually went to bed yesterday afternoon at 2:30pm, and only really woke this morning to get to his test. Ben sat in the waiting room for over an hour waiting for his scan and feeling very unwell. My in-laws took our youngest for the day while my neighbour took our oldest for me and made sure she got off to school. I then joined Ben at the hospital finding him still sitting in the CT waiting room looking very unwell. My heart broke. His pain was intolerable. He was sitting in that waiting room filled with a dozen other people and it was just too much for him. I work in the health industry and know to be patient, but I not going to lie, I was rather pissed off about the whole thing. Shortly after I arrived they called Ben in for his scan.

Next we met with the oncology social worker to go through a few questions we had written down. Ben really was not well for this. He ended up getting up half way through our meeting to head to the restrooms and I could tell he was struggling to even function at this point. We cut the meeting short and went off to our scheduled appointment with his oncologist. At this point Ben was in a wheelchair but in agony. His nurse, who has been with us since the beginning, saw us and arranged for a bed so that Ben could lay down and rest. Ben really didn't want to stay but he was encouraged to meet with his doctor, especially during this time.

We met with Ben's oncologist who went over the next steps of treatment with us. She also told us that she has assigned a pain and symptoms management doctor to Ben. This doctor will be working one on one with Ben to hopefully get him more comfortable and beating this pain he's been fighting. Right now the pain seems to really be coming from his liver, which as you know is full of cancer. Here are the next steps for Ben's treatment plan...

1. After talking to doctors in both Toronto and Hamilton we have learned that there are no clinical trials available to Ben as second lines of treatment at this time. Ben's oncologist, with the help of these doctors, has decided the best approach at this time would be that Ben continue on with chemo here in St.Catharines on a drug called Folfox. When Ben was first diagnosed this drug was an option for him to start with. We opted for FOLFIRI, the drug that Ben has now become resistant to, due to the side effects of numbness and tingling in his fingers and hands. Ben will receive treatment bi-weekly through his port, just like he has been over the past year. I asked the doctor the hard question today... How long do they think it will work? Textbook says this drug has a 10-15% chance of working for another 5-6 months. Ben and I both accepted this answer and moved on. Seems like we are getting used to this kind of stuff.
2. If and when this second line of treatment no longer works, a third line of treatment will be introduced. This will be that "expensive" drug I mentioned in my last post. We did find out that this drug has been covered under the Patient Assistance Program. (Thanks, God) Thankfully we have more options going forward.
3. Chemo treatments will resume next Wednesday for Ben. Back into the chemo room we go. Although, I'd rather be there with him than having no available treatments at all.
4. His oncologist was able to review the CT scan done this morning and everything is clear.

Ben is now home after a really busy and exhausting morning. He is resting and feeling much better after receiving an injection at the hospital today to help with the pain. So, on we go. Next steps.

Thank you for all the prayers for these treatments and funding to become available for us. We both wanted to apologize if we have not gotten back to you if you sent us a message. We are doing our best to respond! I promise!