COVID Gap

Since my positive COVID test on December 14, I have been exiled from Dana Farber until January. Since then, I have been wearing the badge of dishonor and shame.

I wasn't really sick, mostly just tired and lethargic. After a few days, I felt better, but to my dismay, I still tested positive for COVID on December 21. I had no choice but to cancel my Christmas lunch that day with my good friends and business associates, Bahar and Dave. I hope to reschedule that soon. 

A family Christmas get-together was planned at my son, Jeff's, place, so I took another COVID test on Christmas morning. It was still positive! This was a dilemma. What to do? After checking with the family, I decided to go to our Christmas gathering wearing a mask and practicing social distancing. It turned out great, and we all had a good time. 

As the week wore on, I was feeling guilty and wondered whether I had infected anyone with COVID on Christmas. So I texted everyone on Friday. What I discovered was that almost everyone wasn't feeling well, but no one said that they had COVID! I thought there might be one of two reasons for this: either they didn't want to let me know because they knew I would feel terrible, or they didn't really care whether they had COVID or not. 

I'm beginning to think it might be the second reason. Nobody takes a test to find out whether they have the flu or a bad cold. They just deal with it until they get better. I think it's becoming the same with COVID. Who cares why you don't feel good. You know you'll feel better in a few days. Just deal with it. No matter what you have, you don't want to cough in anyone's face until you feel better. Who needs a test? Things have come a long way since the dark days of the COVID lockdown in 2020. 

Except at the Dana Farber Cancer Institute, that is. They still take this very, very, very seriously. As it turns out, I have an appointment supposedly scheduled for this coming Wednesday, January 3.  Ever since I was blacklisted, I've been wondering how I could get back in their good graces.

To clear my sullied name, the trial coordinator, Alice, emailed me with their requirements. I had to take two COVID tests this weekend 24 hours apart, and if they were both negative, I would be allowed to grace their halls with my presence on Wednesday. 

So I took a Covid test yesterday, which fortunately was negative. I took another one today which was still negative. Hooray! I emailed Alice back pictures of the two negative test results with time and date stamps. Hopefully, this will be enough for me to pass muster. Fingers crossed! Now I just hope that this three-week delay hasn't impeded my progress on the clinical trial. 

I said I would share any results I found about Dr. Richardson's paper at the ASH Conference. I found two recent YouTube videos where he discusses the clinical trial I'm on. Here are the links:

https://www.youtube.com/watch?v=SnRFxuh-aHk 

https://www.youtube.com/watch?v=34hCmqrE2JY 

In both of these clips, he talks about two separate arms of the study, the Daratumumab arm and the Elotuzumab arm. I'm not involved with the Elotuzumab part, so you can ignore the last part of these videos. 

If you get through the technical jargon, there are two major takeaways from these results. First, the overall response rate to the MeziDaradex trial is over 80%, up to 89% in some cohorts. This is remarkable! The other takeaway is that these responses are durable and long-lasting, with some patients still in remission over three years later. No wonder the staff at Dana Farber are so excited about this trial. Now I just hope that I will see the same benefits that most of the other patients have seen.

Bone Marrow Biopsy (Part 2)

This past Monday, I was scheduled for the dreaded bone marrow biopsy.  Since I had decided to take drugs, Holly drove me in in the morning for my first appointment. When it came time for the biopsy, I was given "conscious sedation", which consisted of an IV of Fentanyl (for pain) and Versed (for relaxation and memory block). 

Wow, what a difference! The procedure was a piece of cake. I'm going to go this route from now on with these biopsies. Holly picked me up afterward and we went back to their condo in Boston. I had no aftereffects.

On my last bone marrow biopsy on Oct 13, the results showed "monotypic kappa plasma cells present". Flow cytometry showed 1.8% of aberrant plasma cells in the bone marrow aspirate.  I was clearly diagnosed with a plasma cell neoplasm.

On Thursday, I got the results from the latest biopsy. This time, the result was clear: "No monotypic plasma cells detected"! They just disappeared! I'm flabbergasted. I can't believe how well this clinical trial is working right now. 

There's only one fly in the ointment. Sunday, I went to a funeral for an old college friend. One of the mourners became sick on Monday, and he tested positive for Covid. Since then almost all of us there have come down with it. I tested positive on Thursday. Being a good doobie, I called Dana Farber to let them know. To my shock and surprise, they told me I couldn't come back there for 20 days! this means I can't go back again until January. 

I'm really upset about this. After all the wonderful results I've achieved to date, I have to allow 3 weeks for things to possibly reverse. I realize that in severe cases, Covid can remain infectious for up to 20 days. So they are just going to let their cancer patients twist slowly in the breeze for 3 weeks? It doesn't seem fair.

I'll have to keep my fingers crossed that things will just pick up where they left off in January.

Looking Good

On Monday, I began my second 28-day cycle of the Mezi/Dara/Dex clinical trial at Dana Farber. I had several tests done to monitor my progress after the first cycle. They only update these tests once every cycle, so this is my first real snapshot of how I'm responding. Some of the results just came in today, so I thought now would be a good time to update my blog.

Multiple Myeloma (MM) is a cancer of the white blood cells. In MM, cancerous monoclonal plasma cells build up in the bone marrow. These crowd out the healthy plasma cells and make proteins that don't work right. This increase in monoclonal proteins is called an M-spike and indicates the presence of MM.

There are two ways to measure the M-spike. One is by blood serum electrophoresis, and the other is by 24-hour urine electrophoresis. Electrophoresis is a lab technique that allows proteins to be separated by size, and thus identify the monoclonal proteins. I had both of these tests done this week.

To consider MM to have relapsed, the blood serum M-spike must usually exceed 0.5 grams/deciliter (g/dL). My last two serum tests on Oct. 3 and Oct. 30 showed levels of 0.3 and 0.27 g/dL, respectively. While those are below the relapse threshold, they still represent a significant M-spike. The current test result was summarized as follows: "Immunofixation shows a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantitated." Wow! It almost went away!

I also got electrophoresis results from my 24-hour urine sample. The last one I had on Oct 3 showed an M-spike of 115 mg/24hr. Again, while that is below the usual relapse criteria of 200 mg/24hr, it was still significant. Monday's urine electrophoresis test result was summarized as follows: "No monoclonal protein detected"! That is amazing! 

In addition to that, my Kappa light chain number, which had mushroomed and actually triggered my clinical relapse, is still back down in the normal range, where it had plummeted to after the first week. All other indicators are also good.

There is one other test I need to do that will measure the number of plasma cells in my bone marrow. I have a bone marrow biopsy scheduled for next Monday, Dec. 11. My last bone marrow biopsy on Oct. 3 showed a 5% level of plasma cells, below the relapse threshold of 10%, but still quite noticeable. 

I hate bone marrow biopsies! After my last one, I decided to opt for drugs this time. I'm going to have "conscious sedation" via IV to minimize the pain. Since I won't be able to drive, I'll be staying with Holly and Ryan in Boston on Sunday, and she has offered to take me in and back for this procedure, bless her heart!

Dr. Richardson is presenting his paper on this clinical trial this weekend at the American Society of Hematologists. I'm trying to find a way to get a video or a transcript of his presentation. If I can get it, I'll be glad to share it with anyone interested.

While this is still in the very early stages, I am thrilled that I seem to have responded so well over the first month. Dr. Richardson saved my life once. Maybe he can do it again.