Apologies for the delay in updating you all about the beginning of Cycle 7. Ran into several non-Teresa complications that kept me from sitting down to write!
Teresa has also updated her blog, which you can read here.
So, since the last time I updated, Teresa had her first appointment with her new cardiologist, Dr. Eduardo Fernandez. We REALLY like him! Very nice person, and he knows we like information, and goes above and beyond to give it to us. That appointment was the day after Day 8 of Cycle 6. He scheduled her for an echo on May 30.
We weren’t going to see him again until after the start of Cycle 7, so I called the cancer center to try to find out the results, or at least get someone to tell me what the ejection fraction was. As a reminder, that is the main number they check to see if the doxorubicin is causing damage. Hers was 55% the last two times. This time it was 57%! So, that was good news. Most sites (and her doctors) say that normal range is 55-70%.
Cycle 7, Day 1 (June 7):
T’s nurses started prepping her for a regular Day 1 cycle (dox/olara). Dr. Musgrave was out-of-town, but there’s always a doctor in the infusion center until all patients leave, just in case. A pharmacist too. T was close to her lifetime limit of doxorubicin (if I understand correctly, this dose was either the last one, or the one that would put her over the limit — it’s not uncommon for this to happen, especially in sarcoma from what I’ve read), so the pharmacy flagged it. The doctor there reviewed it and made the call NOT to give her any doxorubicin.
T said she would do whatever I thought was best. I agreed that it was better to be safe than sorry since her doctor wasn’t there, and we hadn’t seen the cardiologist yet.
Also, we found out what T was suspecting — that she needed a blood transfusion. The first one since early January. Her hemoglobin and dropped to 7.9, and anything under 8.0 is considered critically low. Her transfusion was scheduled for early afternoon the next day.
Cycle 7, Day 2: Cardiologist
We met with Dr. Fernandez. He said her echo looked really good. He asked when she usually started to have really negative reactions to the chemo, and T said she doesn’t. (This is true. This isn’t to say she doesn’t have side effects, but they’ve been really mild. Especially for the “red devil” of chemos!) He told us he’s not seeing any markers in her echo that would signify oncoming problems with cardiomyopathy, and the fact that she’s had 3 cycles with Zinecard should help. (It doesn’t always work for everyone, and doctors/researchers are not clear yet on why this is the case. Doxorubicin, likewise, doesn’t always cause a cardiotoxic reaction in every patient – even years later, but it can, so there is a limit.)
Dr. Fernandez said this is the point where we (including Dr. Musgrave) have to decide if the benefits of further doses of doxorubicin outweigh the risk of taking it.
A chemo that Teresa may start next (Yondelis aka Trabectedin) is also cardiotoxic. Teresa asked if that risk was cumulative from the doxorubicin. Dr. Fernandez said it wasn’t. He also pulled up a journal to show us a chart about the potential cardio effects from doxorubicin to give us a clearer picture.
Her next appointment with him is in mid July, just before we go to Atlanta, GA, for a Sarcoma conference for patients and doctors. The Sarcoma Alliance is covering the cost of the hotel rooms for the conference!
After we saw Dr. Fernandez, we went to the hospital for the transfusion, where she received 1 unit of blood and enjoyed lunch!
Cycle 7, Day 8 (June 14):
Cycle 7’s dates worked out really well! Day 1 happened after our 5th wedding anniversary, and Day 8 fell shortly after T’s 50th birthday!
Driving down to the Cancer Center, we had no idea if she would end up receiving the missed doxorubicin now that Dr. Musgrave was back, but she only received the olaratumab. (Incidentally, there are patients who max out on the doxorubicin, and then continue for months only on olaratumab, so the fact that she only received it this cycle is not unusual.) She was very excited because not getting the doxorubicin meant she didn’t need to receive the Neulasta patch this time! The olaratumab hasn’t been decimating her WBC like the doxorubicin does!
We also received excellent news. In the past, when she got to the point of needing blood transfusions, 1 unit would only sustain her for a week, and then she would need another the next week. We were afraid that would be the case this time. We didn’t know how much of the anemia was the chemo and how much was the tumor (despite that growth slowed considerably on this regimen).
So last week, her hemoglobin was 7.9. This week? 10.4. That’s not too far from the low end of the normal range! She had a feeling she wouldn’t need a transfusion — she can hear her heartbeat in her ears when she does – but we weren’t expecting this much of a jump!! Her other numbers, including her total protein, are going back up too, and her platelets dropped back down into normal range.
In between the end of Cycle 6 and the start of Cycle 7, we worked on getting an appointment with Dr. Suzanne George at the Dana-Farber Cancer Institute. Our patient coordinator, Ellen, at DFCI told us that Dr. George was not taking new patients at this time, but Ellen said she would reach out to see what Dr. George wanted to do with Teresa’s case. Dr. Musgrave let us know that Dr. George was not returning her calls (and said it was unusual). When I let Dr. Musgrave know what our patient coordinator said, she told me to go ahead and get the names of Dr. George’s partners.
So, I posted to the LMSDR group on Facebook, and asked for people to tell me their *personal* experiences with other sarcoma doctors there. I’d already read the profiles on the DFCI site. I wanted to know what the profiles couldn’t tell me. Then, once I had the names, I asked again to see if anyone could tell me something about the 2 doctors who hadn’t been mentioned the first time.
One of them, we eliminated immediately despite hearing good things about him. This was because he only works 1 hour on Mondays and 1 hour on Thursdays, and books *way* in advance. We don’t want to wait that long.
The second post brought us information about a doctor who really fit the bill of what we were looking for: kind, smart, up to the challenge of sarcoma, may run late — but that’s because he won’t leave your appointment until he answers *all* of your questions, gets you copies of scans without you having to ask, sits with you and explains your scan and compares it to previous ones. And has great nurses.
I texted back and forth with Dr. Musgrave, and then made the call to schedule an appointment with Dr. Michael Nathenson. We got in on Monday, June 25th. It’s an early morning appointment so we’re going to see if it’s possible for us to go up on Saturday the 23rd so we’re not too tired or rushed come Monday.
We’ve gone ahead and scheduled her next chemo (Cycle 8 of current chemo or Cycle 1 of new chemo) for June 28th. We’re still hoping surgery will be an option, of course, but we don’t know if her medical oncologist (Nathenson) at DFCI will want to try her on another chemo first or not. But it’s easier to have the appointment and cancel/move it, than try to get one for the date her next chemo would be during that same week.
It is likely that I will not be able to update about what we learn at DFCI until we return, but I will get it up ASAP. (It’s much easier to update from my computer than on my iPad.)
You can read Dr. Nathenson’s profile here: http://www.dana-farber.org/find-a-doctor/michael-j-nathenson/