Weeks 220 & 221: yet more roller-coaster

Written by Lars Haakon Soraas

Weeks 220 and 221 in the war on lung cancer have passed. They have been tough and difficult. Here are the lowlights:

  • Dyanne did a CT scan two and a half weeks ago and we got the results early last week. We have seen that both the tumor markers CEA and NSE have risen lately, so we were not surprised that the scan showed there was progression. Both in the lungs, liver and lymph nodes. The scan report also mentioned there was, compared to the September CT scan, progression of metastasis in the kidney and pancreas. The CT scan report from September, however, mentioned that the kidneys and the pancreas were normal, ie meaning there were no signs of metastasis. We were thus surprised to learn there now apparently were progressing metastasis in these organs. We have tried to clarify with the hospital what is going on, but with no success so far.
  • Dyanne got an infusion of nab-paclitaxel two and a half weeks ago. On Monday last week she was scheduled to get another chemo infusion. As it was not clear from tumor markers whether nab-paclitaxel was working or not, and as we were planning to go to New York to join a clinical trial, we decided to switch back to the chemo combination we knew had worked for Dyanne before: carboplatin and etoposide. We did not want to go to New York with cancer growing exponentially. Dyanne thus got an infusion of carbo+etoposide on Monday last week.
  • As mentioned in the previous post, we were keen on joining a clinical trial in New York. The trial in question is this one. As we also mentioned in the previous post, a number of stars needed to align for Dyanne to join this trial. In the end, 9 out of 10 stars actually aligned. Close but no cigar, as they say. At least no cigar yet. So what happened?
  • We had timed the chemo treatment so that Dyanne could do the screening for the trial this past week and then start treatment early next week. We did the blood tests we knew they would do in New York to check if Dyanne qualified for the trial. All the blood tests were fine. We also did a brain MRI, which is required to join the trial, and the scan was ok. We had booked tickets and organized babysitter for our daughter. We had paid the hospital in New York a ridiculous amount in deposit to pay for all the exorbitant fees they wanted to charge us (the drug tested in the trial is free, but we would have to pay for CT scans, blood tests, etc, and these cost around 10 times as much as they would do at a private hospital here in Norway). So it seemed all stars were aligned. On top of this, the company who is making the drug used in the trial, NextCure, in the middle of last week presented some early results from the trial (the results are here). And the results seemed very promising! 2 out of 7 lung cancer patients saw their cancer shrinking on the drug. And 3 out of 7 had disease stability. Only 2 out of 7 lung cancer patients saw their disease grow while on the trial. As NextCure is listed on NASDAQ, I followed the share price of the company and, when these early results were released, the share price shot up 250%! So all stars seemed to be aligned and we were supposed to fly out on this past Sunday. But we did not.
  • So what happened? Saturday night, around 20 hours before we were supposed to fly to New York, Dyanne developed a headache. And she started vomiting. We tried the normal remedies, pain killer and anti-nausea medicines. They did not work. She was in no state to travel on Sunday and instead we had to check in to the local hospital here. They did some blood tests etc and did not find any obvious explanation. Eventually, on Monday, they got around to doing a CT scan of the head and, lo and behold, they saw there was a bleeding in the head. The location was between the skull and what is called the dura (the outmost of 3 layers protecting the brain). For those interested, the medical name for the condition is “epidural hematoma”. Oddly, the brain MRI that was done few days earlier looked completely fine in the same area. With this discovery, Dyanne was rushed to another, bigger, hospital here in Oslo. Monday night she had surgery to drain the blood that had amassed between the dura and the skull. On Tuesday morning, after the surgery, the headache and nausea were gone.
  • The cause of the epidural hematoma is currently unknown. We were somewhat disappointed that no tissue or blood was sent to analysis to try to find out what was the cause.
  • Due to this complication, we had to delay the New York trip. Currently we have not set any new date. As will become clear in the next couple of bullet points, we need to take one day at the time.
  • In the days following the surgery, Dyanne slowly recovered. Yesterday, she was deemed in good enough shape to check out of the hospital. Staying in hospitals are no fun, so it was a relief to be able go back home.
  • But cancer life is not easy. When you are happy you have overcome one challenge, cancer throws a new one at you. A couple of hours after coming home, Dyanne felt ill. She was very tired and fatigued. She develops a fever (around 39 degrees Celsius) and also had a bit of a headache. We called the hospital and they said this was normal (we were not, to be honest, totally convinced…). They told us to take a paracetamol and call back if any further issues. Dyanne took a paracetamol. Then she vomited. We called back to the hospital and they say “Ok, come back then”. Damn.
  • Last night, we went back to the hospital. They did a new CT scan of the head and, luckily, the scan was good. By then, however, Dyanne had a lot of diarrhea. Some kind of infection was suspected. After another long night at the hospital, they today found out that the cause of her current ills is a bacteria called C difficile. As the name suggests, it is not the kindest bacteria.
  • Dyanne is today quite a bit better than she was last night. She is still at the hospital here in Oslo and she is getting antibiotics for the C difficile. We hope she will be able to check out tomorrow.
  • Funnily enough, after we had cancelled our trip to New York, the share price of NextCure dropped by 50%. After publishing some preliminary results on Tuesday last week, the company presented more detailed results from the study on Saturday night last weekend. Investors were not impressed by the detailed data. And on Monday this week, the share price was cut in two. Maybe the epidural hematoma was a blessing in disguise 🙂

Are there any good news? Well, actually, there is. We measured CEA and NSE two days after Dyanne got the carboplatin and etoposide infusion last Monday. CEA was stable, but NSE had fallen more than 40% (from 164 to 95). We thus believe the latest chemo round is doing something good.

Another interesting, and good, point to mention is that Dyanne has been taking papaya leaf extract (this one) in order to try to boost platelets (thrombocytes). There are several studies suggesting papaya leaf extract can boost platelet counts. And, after only taking the extract a few days, there was a clear increase in platelet numbers. We have been in touch with others who have seen the same. Our anecdotal evidence thus seems to confirm the studies that have been published.

It has been two tough weeks. Our next steps are not yet decided. We first need a period of rest and recovery. Then we will decide what to do next.

For now, it is Friday, and we hope everyone has had a good week. Santé.

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