We’re off to see the Wizard, the wonderful Wizard of Oz!

by punchmommybelievesinlife


With much debate, it was decided that I needed to go to Oz to meet the Wizards. This team of Wizards were the only ones in this country who had seen the most number of patients with PMBL. They ran, and are currently running, clinical trials with REPOCH. They have written the most published articles on PMBL, of which there are very few, and they are the ones with the most data on survival rates. When they developed REPOCH, one of their specific goals was to create a protocol which removed the requirement of radiation. The research shows that those afflicted with PMBL tend to be young, in their 30’s or 40’s, and are most often women. Radiation, especially radiation in your mediastinum where your heart, lungs, and breasts are, can cause unintended cancer and other bad side effects years down the road. And, since many of the people with PMBL are young, they have many years ahead of them for which these side affects can appear. So, the Wizards, in all of their infinite wisdom, put two and two together and came up with dose adjusted (DA) REPOCH in which the protocol specifically and categorically states that radiation is not needed. PMBL is a rare subtype of lymphoma and there are very few trials specifically addressing the treatment of it. The Wizards’ trials and results are relatively new, only about 10 years old, so many community doctors are hesitant to adopt the protocol. It hasn’t proven itself yet, the studies aren’t good enough, we know what we have been using in the past is good enough so we prefer to stick with it. I wasn’t looking for something good enough.

My Bayou oncologist is a nice guy but he’s not a lymphoma specialist and he has never treated anyone with PBML. The Bayou oncoligst pretty much didn’t know from jack about DA REPOCH. He had no strong opinion about whether we should do radiation or not. DH, having just completed a residency in the Garden of Eden of the Bay Area and having made some connections there, had been in close contact with oncologists there who were fluent in all things DA REPOCH and had been treating patients with PBML since 2006. Every move we made in the Bayou was calculated, calibrated, and overseen by DH and the oncologists in the Garden of Eden. But alas, they were so far away! If only I had gotten cancer before we moved! My immune system and body were too frail to travel so I was stuck in the mud of the Bayou getting health care, advice, and guidance by proxy. Because of all of this, we decided that I needed to see an oncologist at the Cancer Epicenter of the South, a mere five hours away, because that was the closest cancer center where not only were there lymphoma specialists, but there were oncologists who are treating PMBL patients with DA REPOCH. I needed to see someone face to face who believed in DA REPOCH. Who had patients who were in remission and living happy lives. I needed someone to tell me, to my face, you will be ok, you will achieve remission, you will not need radiation. So, we emailed the Wizards and they recommended that we see a particular oncologist at Cancer Epicenter of the South and so that’s what I did. At the same time, we decided that all PET scans would be done at Cancer Epicenter of the South because the Bayou oncologist told us several times that he didn’t think his PET scanners were very good. We’ve got a contract with a company that provides the PET scanners and we just can’t get rid of the darn things. Where the hell am I?

We were very nervous and excited for our first visit at the Cancer Epicenter of the South. I had my second PET scan, which was done after four rounds of DA REPOCH. This scan would dictate whether I would need six or eight rounds of chemo and of course it would show the status of the tumor. I hoped and prayed and that it had shrunk. The plan was to get the PET scan on Monday and then meet with the doctor on Tuesday. On the day of the appointment with the doctor, we waited in the exam room and the nurse popped her head in. Just wanted to let you know your PET looks good. It’s negative. DH and I collectively breathed out our longest breath which we had been holding since October . We could breath again. We couldn’t wait to see what the doctor thought of it all. I pictured me waltzing around the room, carefully circling the exam table, all the while holding up the results of the PET scan, smiling ear to ear, saying, see, see, look what I did! Like a proud little school girl with her first “A.” The decision was made that I would only need six cycle of chemo. Hallelujah! Hallelujah! Hallelujah!Hallelujah! Halle-lujah!

We went back to the Cancer Epicenter of the South after my sixth and last round of chemo for the next PET scan. They said it was negative. Now on the deciding whether I should have radiation. Que the Wizards.

We went straight from the Cancer Epicenter of the South to Oz. We were so twitchy with nerves that we jumped when the heat in the exam room clicked on. What if we didn’t follow the protocol close enough? What if we made a mistake? What if they tell me I need radiation? Where will I get radiation? Where will I stay? What about Little Man? Two hours later, after meeting with the Wizards’ Fellow and then hanging out in the exam room while they presented my case to the team, there was a knock on the door. A stream of people walked in, not one them look like the one of the Wizards we made the appointment with. Wait, wait. Where’s the Wizard? We flew all the way from the Bayou to Oz just to see him. The Wizard is off-site today. I’m sorry about that. DH and I quietly, and under our breath, whispered fuuuuuuuuuuuuuuuuuuuuuuck. My heart sank. I couldn’t believe it. We had been waiting with baited breadth for weeks for this meeting and now this Wizard had the nerve to duck out?! With hopes dashed and tears in our eyes, we sat down and agreed to discuss my case.

Oz’s pathologist looked at my biopsies and they felt confident that my diagnosis was correct, which is critical in insuring that the right treatment is prescribed. Neither the Wizard nor his radiologist had looked at my recent PET scan. Are you kidding me? The whole reason why we wanted this meeting was so that Oz’s radiologist could read my PET scan results. He/She is the only one in the country who has read hundreds and hundreds of PET scans from patients with PMBL. Nevertheless, the Wizard did spend nearly an hour with us answering all of our questions. He felt sure that I would not need radiation. His sureness or confidence about not radiating was never fully there. Like he stopped just one step short of conveying complete confidence in this. But, this is what doctors are trained to do, right? Over confidence can come back to bite you. But, he did have statistics and they were on my side. We were told that in a few short months, a new paper would be published in the holiest of holy grails of medical journals, with an update on their REPOCH study. In short, he gave us the following statistics:

The patients had a median age of 30 years (range, 19 to 52) and a median tumor diameter of 11 cm; 59% were women. During a median of 5 years of follow-up, the event-free survival rate was 93%, and the overall survival rate was 97%. Among the 16 patients who were involved in the retrospective analysis at another center, over a median of 3 years of follow-up, the event-free survival rate was 100%, and no patients received radiotherapy. No late morbidity or cardiac toxic effects were found in any patients. After follow-up ranging from 10 months to 14 years, all but 2 of the 51 patients (4%) who received DA-EPOCH-R alone were in complete remission. The 2 remaining patients received radiotherapy and were disease-free at follow-up.

Well, now that’s something. Unfortunately, I had deviated from the protocol due to the wonderful health care I was receiving in the Bayou. My doctor at the Cancer Epicenter of the South thought that the deviations were no big deal but during this meeting in Oz  the weight of them felt palpable. What if the deviations from protocol are enough to bump me out of these statistics? DH asked the Wizard in dozens of different ways what he thought about the deviations and whether I would need radiation because it was too risky to rely on the statistics with the deviations. Being the Wizard that he is, he attacked each of DH’s questions with well reasoned responses, each one was different from the next. The Wizard tried to get his radiologist to read the PET scan while we waited but he went to lunch. A week later, the Wizard contacted us saying that according to the Deauville Criteria, the PET was positive but the SUV of the remaining mass was 2.4, which was very low. They had patients with masses with SUVs of 5.0 or greater, which are clearly positive, but they reduced overtime and those patients had not needed radiation. He recommended that we do a follow-up PET scan in six weeks just to make sure nothing is going on.