Oncology Appointment

Long afternoon at Primary's for Travis' oncology consultation, I think we were there ~3 hours from when we walked in the building. Travis did great during the appointment and time waiting, we're thankful for his Cars and iPad. :)  Lots of information and some questions to be answered, thankfully no surprises of the not-fun variety.

Travis having fun playing on the iPad while waiting.

After waiting nearly an hour in the exam room, the resident came in to talk with us before we all met with Dr. Afify. While she was somewhat familiar with Travis' case, looking through his chart and notes, she collected background information from us and wanted to make sure nothing of importance was missed. She listened to our concerns, wrote down important information, and interacted wonderfully with Travis. We spent 30 minutes or more speaking with her. The good news, not surprising, is that outside of the plexiform and bone issues, Travis is a really healthy child. :)

I don't remember how much time passed after the resident left to when she returned with Dr. Afify. Dr. Afify was quick to apologize for the delay and that she would not be rushed during the appointment with us and Travis. When she wasn't performing an exam on Travis, she was sitting in a chair talking with us and answering our questions. There was a very slight language barrier, but we were able to quickly resolve any miscommunication. After it was all said and done, Travis said that he really liked her...I think she liked him too.

We spoke mainly about Gleevec and Peg-Interferon (MEK Inhibitor not open for T's age) and the side effects of both, history, clinical trial vs off label use, and quality of life considerations. She was open with us and I appreciate her willingness to share her point of view. I liked that she said things aren't necessarily the easiest when dealing with medical plexiform treatment. With certain cancers, there are known treatments to be fairly effective, not the same with plexiforms. She feels clinical trials help advance knowledge of what medicines work and doesn't work faster than off label use, there's more collaboration with clinical trials and results. Also, there's the added cost to the patients when you aren't part of a clinical trial.

We also talked about quality of life and function. Fortunately Travis' tumor is not compromising any vital organs, airway, etc. Quite a few minutes were spent on T's mobility and how he uses the walker compared to the power chair. We also discussed that Travis will have periods of time where walking is difficult, usually related to some injury or illness. We spoke about the increased pain that Travis mentions to me and how he's wanting me to rub on his back more than a year or 6 months ago.

The 2 drugs we discussed have been around for a while and are pretty well known. She shared some of her experience with these medications in relation to NF. Since Travis may not qualify for Gleevec and that trial may not be recruiting, most of the time in drug discussion was for the Peg-Interferon. She said that the most reported side effects with Peg are flu-like symptoms, fatigue, lowered blood counts. We also discussed that some side effects are only seen while on the drug and that reducing the dosing may alleviate or reduce some of the side effects. This may not be as simple with a clinical trial...

When you sign up for a clinical trial, depends on the phase of the trial also, you don't know what dosing category you (your child) will be assigned. Even she wouldn't know until after the patient is enrolled. However, the doctor and parents can request a decrease in dose if adverse effects appear. I knew that from before, but appreciated hearing those words from her directly. She also stated that children receive lower doses and typically the side effects are less. The Peg-interferon would be weekly shots (subcutaneous) that could be given at home, they would teach us how to administer the shot. When asked, she said that most patients tolerate the shot quite well, and while there is a numbing cream, that takes a while to work and can create more anxiety for the child (waiting 30 min to 1 hour for a shot instead of a minute or 2).

We like her and would feel comfortable with her as a player on Travis' team that we'd see often. We are moving forward to check to see if the National Cancer Institute is still recruiting patients for the Peg-interferon trial and if there would be an opening for Travis. Travis is due for another MRI this month, so we are getting that scheduled keeping in mind that there is a window of time from the MRI to enrolling Travis in a trial. We have an appointment to see Dr. Afify in a month and will proceed, if needed, to explore options if the clinical trial is full.

Turbo time

For now, we do a little more waiting. I'm okay since I wouldn't want Travis to start any medications until after we return from Daytona, IF that is what we decide. *I feel we've done this before* I'm not 100% sure about actually causing pain to Travis by the shots, yet I don't know if I would be. Fortunately I have mom friends whose children are diabetics and they can give me tips, tricks, support.

For now we pray for peace of mind while waiting for answers. Thank you for being a part of this journey with our family. Thank you God for all you continue to provide our family...I'm glad the timing was a little slower so we'll have a fun time at Daytona without having just started a new medicine.