J. Michael Jones

Summary

It was six weeks ago today when I went to the lab for my routine, every 90 days, labs. Unfortunately, I noticed the correct labs were not done and I had to advocate to get the correct ones. Two weeks later, with the correct labs, it was clear my cancer was out of remission. I immediately went to my myeloma specialist in Seattle. As of April 28th we had a concrete plan to address the cancer and she wanted implemented ASAP. Unfortunately, it has been an uphill battle within our quagmire of a healthcare system to get this plan in place. I think most of you with serious or chronic illnesses can relate. I have no clue how patients with no medical background do this. As of last night, it looks like the new treatment program will begin on Monday morning.

My new plan will involve four medications, two by IV infusion. At least for the first two months, I will have 6-8 hour infusions two days a week. If I respond, I hope to eventually be on a once per month infusion or injection.

Sitting through several counseling sessions about the potential serious side effects is daunting. But I suspect many of you know what I’m talking about. With no real choice, but to let the cancer take its course, you say yes and press a head, hoping for the best. Our greatest hope is that this intensive program will get the cancer back in remission and then I can continue on a maintenance therapy of one sub cutaneous injection of daratumumab once a month. If I can last a few more years, good treatments are on the horizon.

Backstory (for those interested in details, family and those with medical backgrounds)

The new program I’m on is oral Revlimid 10 MG 21 days per month. At the same time I will start infusions of daratumumab on Monday and Tuesday of each week. Because it is a monoclonal antibody, it has to be given carefully at first, thus the 8 hour infusions. With that I will get methylprednisolone 100MG infusions five days per month. Another steroid, dexamethasone, will be added orally starting the third month.

From the time I had my bone marrow transplant, I have only been in partial remission. While the amount of cancer has been low (my most recent bone marrow biopsy is still pending, but my previous was 8%) and my M-spike is quite low at .1 (and unchanged), the cancer that I do have has been quite active in producing lambda light chains. While normal is 26 mg/L, I was at 2659

mg/L at diagnosis three years ago (and this is what killed my kidneys), but since the bone marrow transplant I was at 60, which rose to 90 and then with this last test, 204 mg /L.

How do I feel about it?

I don’t know why, but our society is very uncomfortable about writing about feelings, especially in the face of difficulty. I like to discuss and write about feelings because its what makes us human. Yes, of course I’m disappointed. I’m disappointed that I’m faced with cancer to start with. But this last few months I’ve felt the best since my diagnosis three years ago. Now, I will have to take a giant step backwards again. Spending more time in a hospital and with a great possibility of feeling like crap when I’m not in the hospital.

I’m about 80% normal right now with a moderate amount of nerve pain from the disease. So, going into this new treatment plan, I have strong mixed emotions. I do fear the side effects. Diarrhea is very common, but there is a plethora of others, including heart attacks. At the same time, I have hope. I have to have hope. My hope is that this new treatment will push the remaining cancer down hard. It worries my walking around with light chain proteins so high and on no treatment. If my kidneys get damaged further, it would be my worst nightmare. So, my prayer is for a good response and no side effects. I have life to live and having the feeling of the flu all the time gets old.

If this treatment fails, my next great hope to survive is Car-T (unless BiTES or a vaccine wins out first). There are two Car-T treatments on the market for Multiple Myeloma, but they still need some refining to get close to a cure. So, the longer I can delay Car-T, the better off I am, unless my general health starts to fail then it is better to do it while I’m still healthy. Speaking of which, I’m in training now for Car-T. I’m exercising more than anytime in my life. I’m practically vegan. But this fate is out of my hands.

Thanks for your prayers and support. I may post again when my bone marrow biopsy is back.

Mike