How do we measure progress.
Joanie’s next round of this chemotherapy regimen, the third of six, is scheduled for May 9th, the day before her 56th birthday. That sucked more than a little bit, because at least she was feeling good, and there would have been a chance to celebrate in style.
As she recovered from the side affects of the second round, we began to think about what progress, if any, was being made. Joanie and I talked about it from time to time, and it was important to her since she had made up her mind that she didn’t want the program to change.
We both believed in this regimen, and it was a belief based on the success of the same six treatments she got in 2003. We believed it worked before, and it would work again. Joanie, desperately wanted it to work, despite two trips to the hospital following the first two rounds.
As to how progress would be measured, we were not sure. I did call Dr. Carson about the time Joanie went into the hospital in April, and asked her how progress was to be assessed. Dr. Carson told me they would do an assessment after the third round, and before the fourth. She told me how they were going to approach it, and it raised some questions for me. I had all of the radiologist’s notes from CT scans and PET scans, and I figured they would do another PET after the third round, and then compare that to the PET from February prior to the first round. That wasn’t exactly what Carson had in mind, and so I wrote her a letter expressing my concern, from my limited medical background.
“Dear Dr. Carson:
“Thanks for giving me a call on the 24th relative to the question I had about how a response to chemo treatment is measured.
“If I understood you clearly, you indicated that you would use a chest CT scan to compare to the January 18th CT scan. I assume you have the radiologist’s notes from that one. So what I heard is that that would be part of the measuring process.
“Now then, I am wondering if you didn’t mean using a PET/CT scan to compare to the PET/CT of February 15, 2006, which was prior to the start of chemo. Here again, I assume you have the radiologist’s notes from that. What makes me think that using the PET/CT from February to compare to one after her 3rd chemo treatment, which is scheduled now for the 9th of May, would be comparing two scans that provide, at least it seems to me, better definition of what is going on.
“The reason I say that, is that the CT scan of January 18th, the results of which you had when we were in Minneapolis on the 25th of January, completely missed any lymph node involvement, nor did it pick up on the problem of the right mid and lower ribs.
“Here is what the PET/CT scan (February 15th) found according to the radiologist: “There is abnormal FDG uptake seen involving the mid right peritracheal lymph node, a lower right peritracheal/precarinal lymph nodes, be indeterminant left upper lobe pulmonary nodule, and multiple right mid and lower ribs with adjacent abnormal soft tissue. Given correlated CT findings and SUV measurements, these would be most consistent with changes of neplasm.
“Continuing to quote from the PET/CT scan this is what they said. “Impression: Changes worrisome for neoplasm involving some scattered mediastinal lymph nodes, the left upper pulmonary nodule, and multiple mid and lower right ribs with some associated abnormal soft tissue which accounts for regions of soft tissue seen adjacent liver on correlated CT examination.
“You can see now why I would be confused if you choose to use a CT scan to compare to a January CT scan to measure her response to this chemo when the January CT missed the lymph nodes and the rib problem altogether. I do did see on the January 18th CT scan where it noted what they called “some vague regions of increased soft tissue seen within the fat just anterior to the liver in the superior abdomen with the largest region of soft tissue measuring approximately 1.9 CM x 1.4 CM. Those fatty changes to the liver had been noted on several of the CT scans going back to August 2004. My copies of radiology notes for scans don’t go back any further.
“At any rate, I would like to know what you plan to use in the way of comparison scans to assess her progress. Now maybe I don’t know what the hell I’m talking about, but just looking at the notes raises the question I have tried to address here, and I hope you will have a chance to respond, either on the phone or by letter prior to the time we will be coming done to Minneapolis to meet with you.
“As always, I know you are busy, but I do hope to hear from you on this issue.
I never had any training in the area of radiology, and so I couldn’t understand some of the terms, i.e., “superior abdomen,” but I have always been able to understand words, when I know how they are used, and in what context they are used. As a caregiver, it is something anyone can do, plus a good medical dictionary is helpful. Being able to do that gives you a better understanding of what you hear from the doctors. I always figured, if I could do it, anyone could.
We were to meet with Dr. Carson sometime in early June, prior to the fourth round of the chemo, and depending on what happened following the third round, we would have a better idea of what would be next, but what progress, if any, had been made following the first three treatments.
Joanie remained determined there was going to be progress, and as she prepared herself psychologically for the next round, she remained determined this regimen was going to work.