The right care team

I’ve settled on one particular support group as being the best fit for me: LACNETS, which is a 90-minute Zoom meeting once a week. I like it for several reasons. It focuses on my my specific kind of cancer (neuroendocrine), it’s a good blend of emotional support and practical advice, it’s very professionally run, and because it’s weekly if I miss one meeting the next one is right around the corner. Bonus: it’s free to attend! About 25-30 people are on the call each week, and they are all friendly and supportive. It’s a mix of NET patients and caregivers.

I heard through the LACNET group that a NET-specialist physician was soon to move their practice to OHSU, which would bring the number of NET specialists there to three: Dr. Pommier (who did my surgery; that is his focus), the new guy, and one other person. It got me thinking, and I started to wonder why I wasn’t using that “one other person” as my general oncologist. The general oncologist I’ve been seeing is convenient to drive to, which for seven years was great as I juggled full-time work with medical appointments. But, now that I’m in medical retirement and have time, why not switch to a specialist? So, I talked to my oncologist and she got me a referral. I had my first appointment with my NEW general oncologist, Dr. Pegna, on Monday, and he’s great! I can tell I’m really going to like working with him.

Dr. Pegna scheduled some imaging and tests, and prescribed me a new medication, Lomotil, to manage my GI issues. I’ve been on it for over a week now, and so far I’ve seen a lot of improvement, which is HUGE in maintaining my quality of life! Also, we talked about how the Sandostatin is hard to get into my muscle (see the previous post), so he’s switching me to Lanreotide. It’s is a different version of synthetic octapeptide, but is supposed to go into fat instead of muscle, so it will be a better fit for my body type. I have applied for the Lanreotide co-pay card, and hopefully will be approved soon!

I’m proud of the efforts I’ve put in to advocating for my health, and continuing to seek out the best care team.