J. Michael Jones

Summary (for those like me with a short attention span): Not a lot new since I shared my last update, except that I reached out to the Seattle Cancer Care Alliance, and have been invited to be evaluated for a cutting-edge (CAR-T + 2 or 3 modifiers) study on November 5th. If accepted, I would spend two months in Seattle, starting in December or January. It is not nearly as harsh as a stem cell transplant and has some great hope. I will describe more about that below in the longer narrative. I will start chemo on Tuesday and do it every other week. If it does not work and I don’t get into the study, it will be modified by adding more medications.

Background (long version): I’ve said before that having cancer is like the roller coaster ride from hell. One minute, it looks like you are going to suffer and die within weeks and the next minute there is hope for a cure, then vice a versa.

I will admit that after I posted last Tuesday (and just hearing from the horse’s mouth that the stem cell transplant did not work) I had a sleepless night. I don’t say what I’m about to say to add melodrama, but to be honest. During that night, and things are always more gloomy and frightening during the night, I had thoughts of how to take my own life.  I’m glad that the only weapons in the house are a couple of bows and a Viking sword. It is hard to harm yourself with those. That’s how down I felt.

I had such thoughts back in the spring for a different reason. Then, it was wall-to-wall suffering and felt like dying was the only way out of the nightmare of suffering. Now, it is very different. I am doing the best (as far as the way I feel, while right now the cancer is growing unchecked) I’ve done since I first got sick back in December 2018. The stem cell transplant kicked my ass, but I’ve mostly recovered from that by now. My over-all energy level is 80% of normal, although my exercise tolerance is still quite low due to my anemia. But even my exercise tolerance is improving, gradually. I certainly couldn’t run and have a hard time walking up an incline. But I did walk 5 1/2 miles on Saturday and 5 miles on Friday. I walked 2 1/4 miles with Jerry several other days of the week. Even my neurological symptoms have improved. So, I’m not suffering that much.

I think what happened Tuesday night and Wednesday morning was a near lethal dose of disappointment. I could no longer hold back the tears and felt so hopeless with the failure of the stem cell transplant that I didn’t want to live any more, just to avoid such harsh disappointments again.

But, by Wednesday I had recovered enough emotionally to start the fight again, for the sake of my kids and Denise. It was nice to have a visitors Don and Craig this week, and last week, Curt. Now that my white cells have rebounded a bit, I’m trying to get out more to the coffee shop as I think it is healthy to be around people and not so socially isolated.

So, it was Wednesday that I started to look for a good study to get into. I specifically was looking for a cutting edge therapy, one that would give a hope of a long-term (years) of remission or even a possibility of a cure. The major one of these new therapies is CAR-T (I  will explain more about it below). I contacted the Seattle Cancer Care Alliance. They reviewed my chart and called me Thursday morning. I’ve been approved to be screened for the study on November 5th. If accepted, I would go down and enter the study in December or January and stay for two months.

CAR-T Background: To summarize, CAR-T is a process that is being used for several cancers, including Multiple Myeloma. It is where they stimulate your bone marrow to make white blood cells. Those cells are then collected and the T cells (a very important part of our immune system, and the core to that part which adapts to different threats) are removed. The T cells are taken to the lab and then are modified with a gene, (using an impotent HIV virus), that makes the T cell go after BMCA, a marker on the surface of Multiple Myeloma cancer cells (and I’ve been tested and my MM has BMCA).

When CAR-T was first tested in MM, around 2014-2015, it was thought to be a cure. They took MM patients with advanced disease and who had failed at least 8 different treatments and almost 90% had no evidence of cancer after the CAR-T treatment. However, to everyone’s disappointment, the cancer came back in 1-2 years in most of them. Some of them still have no trace of cancer. The thought now is that the CAR-T might work much better in earlier MM (such as myself) and when combined with other drugs that might help to to work better.

If I were to go through a CAR-T treatment and paid for it out-of-pocket it would cost almost 1 million dollars. If I enter the study, most of it would be covered and then, hopefully, my insurance would pay the $150,000 that is not covered. If my insurance refused to pay, then I would be at a “Sophie’s Choice” juncture. I would hate to die and leave my family in debt. Yet, if I lived for years after this treatment, I could earn the money back. I pray I don’t have to make that decision.

To qualify either one of the two studies (and I’ve already reviewed the inclusion-exclusion criteria) the main thing is my kidney function cannot get any worse. The best measurement of kidney function is what is called “Creatinine Clearance.” Normal is above 60. My last measurement was 24. The study requires it to be above 20. The risk to my kidneys worsening between now and then is that my cancer is growing right now and making more and more of this kidney-damaging protein.

In the meantime, I will restart chemo on Tuesday (Velcade). I was on it in the spring and it made me deathly ill (like a severe flu 24-7). This time around, we are using 1/2 dose every other week rather than a full dose twice a week. So, we hope that I don’t get so sick. However, will it work at this dose? Time will tell. If it does not and I cannot get into the study, we will add another expensive drug, Daratumumab.

WRITHING: I am back to writing books. I finished a novel that I had started in April, Christina Athena; The Girl with the Headaches. It is off to the copy editor and then to press in about 2-4 weeks. Once that project was done, I could return to my true love (beside Denise. . . and Greta. . . and my kids of course) a novel that I started in the 2017. It has been interrupted over and over by other priories. It is done except for the closing chapter.

As I’m reading though this manuscript, which I had not picked up since Jan 2019, I have to say that I am impressed. Sometimes I am very critical of my writing, especially since none of them have been a commercial success (which I don’t measure as “getting rich” but earning more than they cost to make). However, I think I’ve done a good job with this one. Now, if I can bring the story to a conclusion and get some help from editors, it will be on its way to press in a few months. The title of it is; Rock Harbor. It takes place (mostly) in a coffee shop in the San Juan Islands in a beautiful harbor town. The barista, Halem, meets a mysterious man (Winston) who comes rowing in from the sea in a dingy.  But is he the world’s most prefect man. . . or a complete fraud?

I probably will not be back for updates, I hope, until after November 5th or unless something good or bad happens before. But with this information, you know about everything and how to pray for us.  Mike