Week 215 in the war on lung cancer has passed. Here are the highlights:
- We are tracking tumor markers CEA and NSE to see if the new chemo combination (weekly doses of carboplatin and gemcitabine) that Dyanne started recently (see last post) is working or not. And, well, were we in for a shock… The tumor marker NSE rose steeply just before the first infusion of the chemo drugs. In the week before chemo, it rose from 72 to 122. Then, a few days after chemo it was suddenly at 262. If anything, it appeared the marker was increasing faster after Dyanne started the new chemo. We were shocked and in despair… Did the chemo act as a fuel for the cancer? Should we give it up and try something else? We looked at the other tumor marker we are following, CEA, and it too increased. But at a much more “normal” pace. The week before chemo it increased from 30 to 40. Then, a few days after chemo, it was at 47. An increase, which alone would have made us uncomfortable, but at least not more than a doubling.
- We decided to do another test of the same tumor markers before deciding on whether to go for a new round of the same chemo combination. And, luckily, the new test, which we did a couple of days later, showed that NSE was suddenly back down to 126. CEA had risen a bit further, to 52. Based on this, and discussion with our doctors, we decided to go ahead with the second chemo infusion, which Dyanne got on Thursday this week.
- Dyanne also did another dose of pulsed afatinib. She did 150 mg and, luckily, this time she did not vomit any. Maybe the anti-nausea drug (Akynzeo) that she got in connection with the chemo also helps reduce nausea from afatinib.
- Dyanne again was fatigued by the chemo infusions. And the pain in the hip has been a bit on and off in the last week.
- This coming week the two new brain mets which were shown on the last brain MRI will be radiated with stereotactic radiation.
So, it has been a bit of a roller-coaster this week. We don’t really know what to make of the very big jump, and then decline, in NSE. We will see how tumor markers develop in the coming week. We hope to see signs that the chemo is working. If not, we may have to shift to some other chemotherapy, or come up with an entirely different plan.
Finally, I also wanted to comment on one other issue. A big cancer conference, the ESMO Congress 2019, was just held in Barcelona. The meeting is one of the biggest cancer conferences in the world, gathering thousands of oncologists and researchers, as well as pharma representatives and some patients and caregivers. The latest and greatest in cancer research is presented at such meetings. This year there was extra excitement for lung cancer patients with EGFR mutations. Data from a clinical trial called the FLAURA study were to be presented. The FLAURA study is comparing the use of a drug called Tagrisso (osimertinib) with the older drugs gefitinib and erlotinib in the first line of treatment for patients with EGFR mutant lung cancer. Some data from the study has been presented. The new data was basically the data that showed whether patients who got Tagrisso lived longer than those who got gefitinib or erlotinib. As is customary at such meetings, one of the researchers who has been involved in the trial presents the data. Then, immediately afterwards, a respected researcher, who has had the benefit of seeing the data a little bit in advance, is invited to comment on the data. His or her job is to put the data in context and to judge whether the new data is good, mediocre or bad. One question such speakers can address is whether oncologists ought to change their practice based on the new results. Should they stick with the old drugs? Or now rather use the new drug?
Given the importance of such new results for oncologists and patients worldwide, any reasonable person would assume that ESMO, the conference organizer, ensures that the person commenting on the new data is, in fact, independent. It goes without saying that this person should not be connected to the study itself and, of course, he or she should not be an employee or consultant for the company that is making the new drug. Did ESMO ensure this? Did they invite an independent expert to comment on the FLAURA study? No. On the contrary, they invited a researcher who was very far from independent. Not only had he been involved in the FLAURA study himself, but he has also been used extensively as a consultant by AstraZeneca, the company producing Tagrisso. And AstraZeneca has also provided large sums of research money for this researcher. For all intents and purposes he is, at least in this setting, best regarded as an employee or agent of AstraZeneca. I honestly think ESMO would have been hard pressed to find any academic researcher on the planet who has longer and deeper ties with AstraZeneca.
Why did ESMO do this? Why did they invite this deeply conflicted researcher to comment on the FLAURA data? I can see only two reasonable explanations. Either they are just extraordinarily incompetent. Perhaps they were so busy planning the conference that they did not have the time to check if those they invited to comment on new trial data had any conflicts of interest. Not that it would have taken them many seconds to do this. It is not like it is a secret that this researcher has deep ties with AstraZeneca. This is public knowledge and is easily available in databases online. Thus, although it may be an explanation, it is hard to believe that ESMO can have been that incompetent.
The only other reasonable explanation why ESMO decided to invite him is that they have some kind of deal with AstraZeneca. The pharma company is sponsoring the conference and maybe a condition for that was that the speaker commenting on the FLAURA data should be the researcher in question (whom AstraZeneca probably would trust to spin the data favorably). Perhaps there is no direct quid pro quo, perhaps just an implicit understanding that AstraZeneca’s sponsoring of the event (or future events) is dependent on the FLAURA data being spun in a positive way. I don’t know.
Independent of whether the explanation is ESMO’s incompetence or some shady deal with AstraZeneca, ESMO has let down patients and oncologists worldwide. We have been robbed of a good, thorough, and independent discussion of the FLAURA data. Such a discussion could have helped the worldwide oncology community, including patients, doctors, hospitals, insurance companies and governments, to understand when and where to use Tagrisso and when to use other alternatives. Instead of a fair and balanced discussion, ESMO instead gave us AstraZeneca spin. ESMO may have pleased the bosses and shareholders of AstraZeneca, but it has let everyone else down. It is a travesty and it is a tragedy. It also stinks and I really hope some independent journalists will dig into this and find out what is going on.
In the future, I hope ESMO will do better. Much, much better. Cancer patients worldwide need ESMO to be, and do, better.
The only good news is that I am not the only one to think that this stinks. I have spoken with quite a few patients about this, and almost all find it very disturbing. And many oncologists and researchers also find it upsetting. Interestingly, the only ones who don’t seem to see that this is an issue are the ones who themselves have been paid by AstraZeneca. And I am sorry to say: on this issue, I don’t really think we should listen to them.
For those interested, an independent researcher and oncologists, Dr Vinay Prasad, who has a podcast series called Plenary Session, has discussed some of the flaws in the FLAURA study in his latest episode. He has also mentioned some of my tweets on this topic. The episode can be found here: https://soundcloud.com/plenarysession/ep216 (the first half hour is the interesting part of the podcast).
Hope everyone has had a good week!