Hi All,
Hope everyone is having a happy holiday season - whatever it is you celebrate!
Mom and I had an appointment with her oncologist yesterday and we are both still reeling and a bit shell shocked. I wanted to run the whole story by you just to get your take. We have decided to stick it out for a few more appointments, but are weighing the pros and cons of switching (would love to hear your thoughts on this too!).
Fair warning this will be a LONG post. 
I'm going to put it into timeline fashion for easier reading/following.
Cast of Characters: Mom, Me, Dr. Z (Oncologist), “AM” (Physician Assistant)
Background: Mom diagnosed with metastatic breast cancer to pleural lining on 12/31/19. Placed on Ibrance/Letrozole. In the past year, we have seen “AM” about 90% of appointments. Dr. Z about 10%. We are in the USA, Georgia.
12/1/2020: Standard start of cycle follow up visit. Getting a blood draw for CBC (neutrophils). Mom had just recovered from Hepatitis A, so we were also getting Liver enzyme counts just to make sure things were getting back to normal. Neutrophils came back good, approval to start next cycle given. Also discussed scheduling CT since she was due (we schedule every 3/4 months). For this appointment we saw Dr. Z. We discussed that she was going to schedule the follow up for 12/22/2020 since she wasn't sure how long it would take us to get the CT set up. She said I could always reschedule the appointment for earlier if we got the CT sooner.
12/2/2020: Liver enzymes came back mostly normal. One was slightly elevated by about 4 points. Compared to 120 points above normal at the highest when dealing with Hep A.
12/8/2020: Got the CT Scan. Rescheduled the 12/22 appointment for 12/15 to give ample time for results review.
12/9/2020: I called the office to see how soon they were going to receive the scan results. Mom had been experiencing some pain in her abdomen for a few weeks (discussed with Dr. Z on 12/1 appt) and we wanted to know if the CT showed anything - didn't want to wait for the 12/15 appt if we didn't need to. “AM” called me back and told me that the cancer was stable no spreading or growth (YAY!) and that she didn't see anything in the abdomen area. I asked her if there was any reason to keep the 12/15 appt since we just reviewed the results of the CT and she said yes, that Dr. Z wanted another blood draw to make absolutely sure the Liver enzymes were staying down. Ok, no problem.
12/15/2020: Get to the oncologist office, mom has her blood draw. We are waiting in the exam room and Dr. Z’s assistant comes in and asks us how many Ibrance pills we have left. 7 – we are mid-cycle. Dr. Z then comes in and informs us that the CT came back good – no growth or spread. The meds are working. She does a physical exam of mom and then starts talking about how we need to get back on track with our CBCs, that we should be scheduling for Day 1 of the cycle, not Day 8. She will put in for our next appointment on 12/29. That would have fit in with a standard Ibrance cycle of 3 weeks on/1 week off, but mom had changed to 3 weeks on/2 weeks off to give her neutrophils time to rebound and avoid an unnecessary blood draw – this change was made back in May/June. Dr. Z asks who put you on that? (!!!!), and I said “AM”. Then she asks, what mg of Ibrance are you on (!!!!), I said 100. I then told her that the only reason we were here was to get the CT results and retest the Liver enzymes. That we had no intention of getting an unnecessary CBC – since the neutrophil results would be useless mid-cycle. Dr. Z asked who told me to retest the Liver enzymes, and I explained that “AM” mentioned it when we spoke last week. Dr. Z leaves the room (I had some additional questions I wanted to address – so I did manage to keep her from leaving the first time), and her assistant comes back in to confirm the January/February appointment dates: 1/5/2021 and 2/2/2021. By this point I was in such a state, I said yeah sounds right. My phone has the ability to set monthly reminders for a specific number of days apart. For a 3/2 Ibrance schedule this is 35 days. That makes the next appointments 1/5/2021 and 2/9/2021. I get to the check out desk and the 1/5 date is correct, but the 2/2 is not. I scheduled for 2/9.
Concerns:
*Dr. Z clearly had NO IDEA that mom has been on a 3/2 Ibrance schedule for months.
*Dr. Z clearly had NO IDEA what dosage of Ibrance mom was receiving.
*Dr. Z initially scheduled the CT follow up for 12/22, which wouldn’t have fit with a regular or modified Ibrance schedule, so why was a CBC ordered in the first place???
*After an indepth conversation about the length of the cycle, they still couldn’t get both Jan/Feb appt dates correct!
We have been doing this for almost a year and admittedly the Hep A did throw things out of wack (since she had to stop the Ibrance for 2 months), but I felt Dr. Z’s questions were a bit accusatory (ie: why did we get a CBC?, why test for liver enzymes?), when we don’t have the ability to order tests and are literally just jumping through the hoops when we arrive. Go here, go there, etc.
So here we are, a bit confused on what happened and what to do. Obviously we are over the moon that the drugs are still working, but seriously concerned about the level of care. If you have made it this far, thank you! I would definitely appreciate your take on the situation.
Thanks so much!!
Deanna
Update on Denosumab and Oncologist call
I’ve seen the oncologist
Oncologist visit went well 👍
Amazing Oncologist Report!
