Weeks 181 and 182 in the war on lung cancer have passed. It has been two quite hectic weeks. Here are the highlights:
- Dyanne’s shape has been a bit up and down. She got the flu, lost some weight, then regained some of it, and now she has an annoying cough. Given the accumulated weight loss (from 55-56 kg to now 51 kg), a priority is to put on weight.
- The PET scan that was done in January showed that in 2, or maybe 3, places there were still active cancer. There was a metastasis on the neck that was deemed to most likely be active cancer. And there was a metastasis in the iliac bone (hip) that very much looked like cancer. And then is a spot in the lungs which may, or may not, be active cancer. Based on this, it was decided to radiate the two spots that were deemed to most likely be cancer. Radiation was started last week and the last fraction will be delivered tomorrow.
- We have, for a while, looked into intratumoral immunotherapy. In short intratumoral immunotherapy is about injecting something into a tumor, with the hope that this something will help the immune system recognize the cancer and eradicate it. The ideal would be if the immune system not only eradicates the injected lesion, but also other tumors elsewhere in the body. A good introduction to the field can be found here. Dyanne has, generally, never had any tumors that were easy to inject anything into. Until now. The metastasis on the neck that lit up on the PET scan is simple to inject something into. Long story short: we decided it was worthwhile to try to do an intratumoral injection into this tumor, in the hope that this could help educate Dyanne’s immune system to recognize the cancer cells. Our hospital here in Oslo (Oslo “University” Hospital) refused to help us with doing this, not because they lack the required skills or thought it was a bad idea, but because they have all kinds of stupid rules which precludes them from trying to help terminal patients survive. So once again we became medical tourists and had to travel abroad to have the treatment done. The treatment went well, i.e. there were no complications. Dyanne has had some flu like symptoms since the treatment and we interpret this as a potentially good sign that her immune system is active.
- As best results with this kind of treatment may be obtained if the treatment is repeated, we hope to be able to find someone in Norway who can help us do it going forward. If you know anyone who could help, please do let me know (firstname.lastname@example.org). The key criteria is that the person is able to use ultrasound to guide a needle into the tumor.
- As we have mentioned before, we track two tumor markers closely: CEA and NSE. These seem to correlate with Dyanne’s cancer. If they go up, there is more cancer in her body. If they go down, the cancer is shrinking. Needless to say, as these are relatively simple blood tests, they are not perfect markers of the cancer. They can be impacted by other things than cancer, but, on the whole, we have experienced them to be pretty accurate and reliable indicators of how Dyanne’s cancer is developing. As mentioned in a previous post, both markers fell very nicely after Dyanne started chemo in December. NSE fell to around 10, but has, in the past 2 weeks, shown some scary moves. First it jumped up to 15, but then dropped down to 10. Then it jumped up to 18, but has now fallen down to 11 again. Anything less than 12 is normal, so 11 is a level we can live with. The sudden jumps to 15 and 18 were, however, scary.
- When it comes to CEA, it seemed like it had plateaued at around 9. And with the normal level for non-smokers is below 2.5, this was obviously a concern for us. Thus, in line with our general approach to this disease, we decided to do some changes in Dyanne’s treatment to see if this could cause any further declines in CEA. One thing we did was to add mifepristone (200 mg per day). Mifepristone is a drug used to induce abortions. However, it also has promising anti-cancer activity, as for instance shown in this and these case reports. Dyanne also increased the dose of curcumin and stopped taking vitamin E. Furthermore, she has restarted disulfiram, but at a much lower dose than before (100 mg per day vs 400 mg per day). The good news is that some of this perhaps actually is working. CEA, which seemed to have plateaued at 8.8, last week dropped to 8.0 and then to 7.1. Maybe these drops would have happened anyway. Or maybe they are just some noise in the data. There is no way we can be certain. We are, however, hopeful that one of the things, or maybe a combination of the things, we are doing is contributing to killing of cancer cells. We will monitor CEA and NSE closely going forward to see if the good trend is continued. At the bottom of this post are a couple of charts showing CEA and NSE.
- Even if we are now in treatment mode, and are actively trying out new treatments while monitoring tumor markers, we are also still in analysis mode. In the past two weeks, we have gotten two very interesting reports. I will describe one of these here, and may come back to the second in our next blog update (pending OK from the team who did the report).
- The first report is from another round of drug sensitivity testing that has been done. A lab at Augusta University, headed by Dr Jin-Xiong She, is developing a drug sensitivity test. In short, they take tumor material, add a number of different drugs or drug combinations, and then read out which drug killed the tumor cells most effectively. The approach is very similar to the drug sensitivity testing we did before Christmas in Finland. As all these approaches are still experimental, and not certified or validated, we figured it could be interesting to have a second lab also test Dyanne’s tumor cells. We got the report 10 days ago and there are several interesting findings. I will not go into details, but those who would like to read the report can find it here. The various columns represent different concentrations of drugs. “Dilution 1” represents the highest dose tested of the drug, and “dilution 10” the lowest dose. It should be stressed that all these results must be interpreted with caution. Whether the lab results correlate with responses seen in patients is not yet known. Anyone who is interested in trying out this test can contact Dr She on JSHE@augusta.edu. A prerequisite is that one has fresh or cryopreserved tumor tissue available.
Finally, I also wanted to mention that we have learned something which makes us somewhat less optimistic about the anti-cancer effects of fenbendazole. I have previously mentioned fenbendazole on this blog, and one of the main motivations for Dyanne starting this drug was the story of a US cancer patient, Joe Tippens, who has this website: https://www.mycancerstory.rocks/single-post/2016/08/22/Shake-up-your-life-how-to-change-your-own-perspective. Joe was diagnosed with small cell lung cancer and has tried out a combination of fenbendazole, vitamin E, curcumin and cannabis oil, with seemingly amazing results. A clever woman pointed out to me, however, that Joe, as is mentioned on his blog, also was part of a trial at MD Anderson. What trial he was on is not mentioned on the blog, but, from emailing with Joe, I have learned he was on a trial testing out an immunotherapy drug called pembrolizumab (Keytruda). Joe attributes the regression of his cancer to the fenbendazole, and not the pembrolizumab. From my communication with him, from what is written on his blog, and from the latest research I have found on pembrolizumab in small cell lung cancer, it is not clear to me how he can be so certain that it is the fenbendazole protocol, and not the pembrolizumab that has caused the regression. To me it seems equally possible that the cause of cancer regression was pembrolizumab. Or perhaps it was some combination of fenbendazole and pembrolizumab. I acknowledge that I do not know all the details of Joe’s case, and maybe there are indeed good reasons to believe it was fenbendazole, and not pembrolizumab, that eradicated his cancer. In any case, as we have mentioned fenbendazole on this blog in the past, and mentioned Joe’s blog, I wanted to report this new information so that anyone considering trying out fenbendazole has as complete information as possible. And for those wondering if this has made us stop fenbendazole, the answer is currently “no”. Dyanne is still taking fenbendazole. We still believe it is a drug that potentially can work against Dyanne’s cancer, and the side effects are pretty close to nothing. And it is also a relatively cheap drug to use. So, on balance, she is still continuing with it.
Hope everyone has had a good weekend!