Week 43 in the war on cancer has passed. It has been an interesting week. Here are the highlights.
-First of all: you can now follow our journey also on the following website:www.alunglife.com. We will keep posting here on Facebook, but will post the same updates on the website as well.
-Then, and most important, Dyanne has been in very good shape this week. That is the way we want to keep it 🙂
-Every second month or so, Dyanne has an appointment with her oncologist here in Oslo. Before these meetings, scans of her lungs (CT) and brain (MRI) are done. Our next meeting is tomorrow. However, we were told recently that they did not have capacity at Radiumhospitalet to do either the MRI scan or the CT scan in time for our appointment tomorrow. The CT scan we were not so worried about, because we had, on our own (with some help), set up a PET/CT scan this week that just passed. A PET/CT is quite similar to a CT, so the CT scan was not so important. But the MRI scan of the brain we needed and did not want to delay. So we insisted we had to have the scan before tomorrow’s meeting, but were told that they have no capacity to do it. Not only that, they said “there is so much queue now that even emergency MRI scans are waiting in the queue”. We then asked them if we could get the scan done somewhere else and they said they did not know, we had to investigate ourselves (MRI is a quite standard technology and most hospitals have such machines). We called Fritt Behandlingsvalg (aka Fritt Sykehusvalg AKA Helfo; a service that help you find public hospitals with short waiting lists in Norway) and they said we could travel to Kongsberg where they at least could do it in 2 weeks (still not in time for our appointment…). After a lot of back and forth and dead ends, we figured out there was a place that could do it:Ullevål Sykehus. For those not in the know, Ullevål and Radiumhospitalet are basically two different locations that belong to the same hospital (Oslo University Hospital). Rumor has it that there is a lot of infighting between the two locations after they were merged to one hospital. And rumor has it that neither people or IT systems of the two locations communicate with each other. The good news for us was anyway that we got the scan done in time. What is insane, however, is that patients are probably dying (at least dying sooner than they ought to) because they can’t get their MRI scans done on time at Radiumhospitalet. At the same time, a different division in the same hospital, Ullevål, has free capacity to do the scans. How poorly managed the public hospitals in Norway are never stops to amaze me.
-Many doctors are of the opinion that there is no need to do tests unless there are proven therapies available if the test turns out positive. In the war on cancer, we take the opposite view: any information and intelligence we can gather about the disease might turn out to be helpful in this battle, either now, or later. So, in this spirit, we did, as some may remember, the 23andme gene test. The test has, so far, not yielded any useful information in the fight against Dyanne’s cancer. But the test did reveal that I am an ApoE4 homozygot (i.e. I carry two copies of the ApoE4 gene). This increases my chance of getting Alzheimer’s fifteenfold or so. That was the bad news. Then the good news: they have just figured out how to reverse Alzheimer’s. And this knowledge may also be useful in preventing Alzheimer’s for high-risk people (such as me). So, now that I know I am in a high-risk group, I can now start doing things to ensure I reduce the risk of actually developping the disease. Here is the short story:http://www.techtimes.com/articles/165513/20160617/personalized-combo-therapy-may-help-reverse-memory-loss-from-alzheimers-disease.htm and here is the long story:http://www.impactaging.com/papers/v8/n6/pdf/100981.pdf If you know anyone with Alzheimer’s, and if they are keen on getting rid of it, I would recommend reading this article and trying to implement the protocol described. Don’t expect this protocol to be offered by a hospital near you or your loved ones anytime soon.
-Finally, I have written an article in the Norwegian health care magazine Dagens Medisin. The article is basically an argument for Norway’s health care system to invest in personalized cancer vaccine research. As long as no one in the public health care sector in Norway are incentivized on saving lives, I have no illusions that the idea will ever be implemented. But I still think it would be a nice idea. If you are interested, you can read more here: http://www.dagensmedisin.no/artikler/2016/06/19/to-utfordringer–en-losning/
So it has been an interesting week. And we cross our fingers for the meeting tomorrow where we will learn the results of the latest scans.
Have a good Sunday.