Since my Mom was diagnosed with a Pancreatic Neuroendocrine Tumor and sent home at the end of August, a few things have happened that have been notable. She received a patient number at the Calgary Cancer Center, which means she is in the system and can call and get access to the services they provide. She was diligent in calling the doctor's office to make sure her follow up tests were scheduled quickly and during the same time. Very little happens without someone calling to make things happen.
In the middle of September she went back up to Calgary for a week of tests and a meeting with Dr. Ruether, who will now be handling her case. The tests (an MIBG scan and an Octreotide scan) were gruelling, all day affairs in which she had to lay still for sometimes up to 30 minutes. Have you ever laid still that long? It's difficult. The tests consisted of her being injected with radioactive material and then getting scanned. Besides the scans, she also met with the doctor and he started her on a hormone therapy drug called Sandostatin (Octreotide immediate-release injection). This is meant to alleviate her digestive symptoms and allow her to gain weight. They put her on the short-term delivery method, which is three shots every day in her thigh.
A week and a half later the results of the tests came back and they drove up to Calgary again to meet with the doctor. The tumor took the radioactive material very well and the scans showed that the tumor was in a few of her lymph nodes, but had not metastasized to other organs. Because it responded so well to the nuclear medicine, she is a candidate for a new radiation treatment in Edmonton called Peptide Receptor Radionuclide Therapy, but it won't begin until at least January. From what I can tell it is a fairly new therapy and is only offered in a few places around the world, including Texas and Germany. It was approved for use in Texas just one year ago and at that time it was the only place offering it in North America. The program in Edmonton must be brand new, I can't find out any information online about it. It is a hormone-delivered radiotherapy, where patients are injected with a radioactive peptide that binds to the tumor cells and kills them. The response rates are good and her quality of life should improve.
Otherwise, the Octreotide injections were going well, so they added the long-term delivery shot, which she will get once a month. It was supposed to replace the daily shots, but she seems to feel better when doing both so she is continuing with the daily shots as well. The doctor is the most concerned about her gaining weight. So far she has been able to maintain her weight but she has not gained any. She met with a dietician last week to talk about what she can do to try to gain weight and besides simply eating more calories, she has to also try to do less. It sounds so simple, eat more and do less, but it's in opposition to her basic nature. It's the opposite of how she has always lived her life.
Those are the basic facts. There are some details that I won't get into here. It's a very emotional, difficult time that is full of change and sometimes it's hard to cope with and adjust to change. I ask lots of questions, try to help and give her advice but it doesn't seem to be what she needs from me right now. This is her journey and she needs to figure things out for herself. I understand that feeling, more than most, and I've been trying to respect that and give her some space.
Overall, I think my Mom is feeling better. The hormone therapy seems to help her with reducing her symptoms and discomfort and she is doing what she can to make adjustments so that she can gain weight while she waits for the Radionuclide Therapy next year. All any of us can do is to just try and live our best life with what we've got.
I want to thank everyone again, for all the notes and inquiries about how she is doing. I appreciate everyone's care and concern. I apologise for not writing sooner, I wanted to wait until there was significant news to report and in some ways, it's very difficult for me to write about this. There is so much wrapped up with it that I need time to separate the facts from the feelings. Thanks for understanding.
Part 2: From Bad to Worse
Part 3: Waiting For a Diagnosis