Disappointing!

Today my husband and mother-in-law were scheduled to be interviewed along with Dr. Ian Flinn of Sarah Cannon Research Center in Nashville on Doctor Radio (Sirius/XM) about the approval of a new breakthrough drug in the fight against chronic lymphocytic leukemia. I spent a considerable amount of time on the phone, upgrading my XM service to online listening and listened to the half hour preceding their scheduled interview, which focused on silent reflux and esophageal cancer. It was very interesting. And after hearing what the guest doctor had to say, I'm thinking I may never drink another soda. I already have nearly eliminated carbonated soft drinks from my life, but I do still have one occasionally. The program was very informative and I was eagerly anticipating the upcoming half hour devoted to patient experience with newly approved CLL drug Zydelig (pronounced Zy DEL ig).

Well, the moderator went over ten minutes into the scheduled time for Dr. Flinn/John and Marian by taking additional listener calls for the acid reflux doctor. And after that delay, another moderator arrived late due to a patient emergency. He seemed unprepared for the interview and cracked a lot of jokes, eating up more of the time. There was more banter back and forth between the hosts than I would have expected for this kind of topic. Also disappointing. But then when he did get around to focusing on the subject at hand, he never even acknowledged the patient guests (let alone asking them any questions). He directed his questions only to Dr. Flinn, which was not what Dr. Flinn had in mind. And then the time was up without John or Marian even being mentioned.

If the late (as in tardy) moderator had been involved in the pre-interview process, he probably would have understood what everyone else's expectations of the interview were. The whole idea was to talk to patients who had been involved in the clinical trial for CAL-101/Idelalisib/Zydelig. Dr. Flinn wanted them to share about their experience as patients. But that's how it goes, I guess.

Throughout the conversation, the moderator (who is also a doctor) joked about how his expertise was tumor related. He didn't seem to be that familiar with hematology and asked some questions that I knew the answers to. I felt like that was one of the most important messages for listening patients to get from this quick chat. I can never emphasize strongly enough to newly diagnosed patients the grave importance of consulting a specialist in your specific disease. A general oncologist cannot possibly keep up to date on every form of cancer. Sometimes they are less informed than you or I could possibly comprehend; especially when it comes to new treatments. It's not a dig on general oncologists. It's just a fact. The field of medical science and oncology in particular is constantly and rapidly changing. I know this to be a fact in blood cancers just since my husband was diagnosed in 2007. We have seen major changes and developments in treatments during that time. And one of the biggest is the recent study of kinase inhibitors like idelalisib and ibrutinib. Chemotherapy is being replaced by these drugs. And for John, this low-toxicity oral medication taken morning and night is succeeding in keeping him in good health after FCR (the gold standard chemo for CLL up to this point) failed to give him any remission at all.

I have to be honest; I was extremely disappointed in this program after anticipating John and Marian's participation and announcing it to my CLL friends. I don't know how many tuned in and wondered what was going on. But since I advertised it on my blog and on Facebook, I just thought I'd give an explanation. They intend to reschedule another interview in the future. If and when that happens, I'll definitely share the information.

Comments

Anonymous said…
Hi Shari
Hope your ok ,i left a comment in April saying how much i enjoyed the blog and thanked you for sharing it , thanks for your reply , how is john and his mother in law doing now really hope all is stable and are well, still on CAL 101 ?, im Still watch and wait 3 years, running 5 km 3x a week but neck slowing getting bigger ,lol the good looks slowly going .Anyway keep up the blogging
Take care ,Best wishes to you all
steve
worcestershire
uk
uk
Shari said…
Hi Steve! Thanks for staying in touch. John and his mom are both doing great. Still on Cal101 (Zydelig). I'm not sure how this drug approval works between countries. Are these new kinase inhibitor therapies not available in the UK? John's biggest issue was swollen lymph nodes and they have been under control since 2010 with Cal101. Chemo did not work, but fortunately he tolerated it well and has not had side effects from it. I would hold out for these non-chemo drugs as long as I could if I were in your position. But I don't know how long it takes for the same drugs to be available everywhere. Best to you as well.

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