Treatment options for mom

By | Tue May 1, 2018

We had an interesting call yesterday – from a nurse at the oncologists office. She said that the doctor wanted to prescribe Yervoy (Ipilimumab) & Opdivo (Nivolumab). In order to do this, mom would need to apply to the Access to Hope program, which would allow her access to these medications possibly for free. This is the first we have heard of this; however, we have an oncologist appointment tomorrow which will clarify this for us. I am wondering if this might align with clinical trials? The document doesn’t talk about the use of Yervoy in Renal Cell Carcinoma (RCC). I have not yet seen the pathology report (still trying to get my hands on it), so I don’t know if it is clear cell or non-clear cell RCC.

There was some mention of cost of this treatment to be something in the range of $40,000 per treatment. I am finding it interesting how the cost of medications is a consideration in Canada just as it is in the US, as are delays in treatment in order to get approvals for the medications because of the high costs involved. In some ways I’m finding it more complicated here, in part because we have not yet had a conversation with the oncologist about cost of treatments.

The Access to Hope nurse mentioned that the treatment was given every three weeks for four cycles, and then just Opdivo every two weeks until the treatment stops working. A follow up CT scan is given after the four cycles of Yervoy plus Opdivo to see if it is working.

The advantage to getting the medication without a clinical trial is that it can be administered at the local clinic, rather than going to the research centre, which is an hour plus drive away. The disadvantage is that it is an infusion based therapy (it is immunotherapy, which has been very promising in kidney cancer), which means she would need to spend 4-5 hours in the infusion centre for each treatment of the Yervoy + Opdivo, and then 2 hours for the Opdivo alone.

When we first talked to the doctor, he said the treatment would be Sutent (Sunitinib), which is a pill form targeted therapy.

What I am finding here is that the healthcare team does a lot of work in the background. They don’t bring the patient into the conversation until they need to. It is comforting to know that they are looking into multiple options for treatment, but it would be nice if they let me know a little more about what was going on.

We have heard only good things about mom’s oncologist. The nurse that was here to check up on mom yesterday mentioned that she was impressed to hear that he was looking into additional treatments. This too is comforting. We also like that he has appointments in Welland as well as St. Catherine’s, so we can sometimes go to appointments at the local hospital which is only 10 minutes away.

Looking at the various clinical guidelines, for stage 4 kidney cancer that is inoperable (an assumption we are currently making as we have not heard about surgery being an option), that the first line of recommended treatment is “clinical trial”.

In addition to this, mom did the bone scan yesterday. As her primary caregiver, I may have been exposed to enough of the radioactive tracer to set of detectors at the airport – which may make my airport experience on Thursday morning interesting. That being said, the half life is only 3-days, and it wasn’t injected into me – so I likely will be fine. I have the form that explains it, in the event that I need it.

Mom has one more CT scan scheduled – on Wednesday morning before the oncologist appointment Wednesday afternoon. This is the last of the diagnostic images, so we should have a complete picture of the extent of the disease once we get these results.

Today we have no scans or doctors appointments, however, there is a balance and strength exercise class that we are hoping to attend this afternoon. It is twice a week on a drop-in basis, and might work well for mom. She is stronger now than I’ve seen her in a long time. She even stood without a walker or hanging onto anything – which is not something I’ve seen her do in a long time (months if not years). I hope the balance and strength class improves that too.

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