We travelled to California on Tuesday the 21st of May and returned on Thursday May 23rd to see Dr. James R. Berenson in West Hollywood. He is known in the multiple myeloma community for having the best results of any physician in the country, and he takes a low-dose approach as much as possible as compared to standard treatment protocols. 

We met with him on Wednesday morning and his evaluation of my case was very different from our current oncologist. We have been told I am "high-risk" because I "presented" with a plasmacytoma in my lung (plasma-cells coming out of a bone that look like a tumor) when I first got diagnosed. I was also diagnosed at a relatively young age compared to typical patients, and relapsed within a year after the bone marrow transplant. 

Dr. Berenson doesn't recommend bone marrow transplants in general, and he said that presenting with a plasmacytoma doesn't mean I'm high risk. If I develop one later, that may indicate high risk. In every bone marrow biopsy I've had, they have never found any of the high-risk cytogenetic abnormalities that are well known to be high risk. 

He reviewed the CRAB criteria and I don't have high Calcium levels, I don't have Renal issues (kidneys), I don't have Anemia (low red blood cell counts), but I only have Bone involvement (lytic lesions). He said this is the "best kind of myeloma" which should have a good prognosis of being able to control it. My light chain levels are low right now, so he wasn't overly concerned with the severity of my cancer right now.

He doesn't like the CAR-T treatments procedure which he considers a "work in progress" with a lot of risks. It is also a hard treatment to endure, and didn't make sense in my case at this point. He said it was "crazy" to consider it right now, but our current oncologist is pushing us to do it. He said it is the "shiny penny" that everyone is excited about. 

He is referring us to an oncologist in Arlington that will follow his treatment plan. It will start with a monoclonal antibody named Emplicity that should have no side effects. It is an IV infusion, but Dexamethasone steroid will be given the night before. He said there is only about a 20% chance it will work as a single agent, but we should try it to see if it works. He has a patient who has been on it for 12 years, and other patients have started on it at higher light-chain levels than I'm at currently. 

If that doesn't work, we can add another oral drug called Pomalyst that should have an 80% chance of working in combination with Emplicity. 

I have a bone lesion on my femur that was found with an MRI. I also have pain in my neck and back which feels a lot like lesions, but the last MRI didn't go up high enough to verify. Dr. Berenson doesn't normally prescribe radiation for lesions as it is just palliative and doesn't address the root cause. At the current time, the pain is manageable and we don't plan to do any radiation. 

This plan shows how he starts with the minimum treatment level needed and works up from there depending on how a person responds, vs going to a high intensity treatment as the first choice. This gets into the "cure vs control" debate where most doctors want to try for a "cure" and use the high-intensity treatments up front. Dr. Berenson is in the "control" camp to try and control the disease with the minimum amount of treatment necessary. Controlling the disease is a "functional cure" no matter what you call it. 

We really like this philosophy and plan to use this treatment plan instead of continuing with our current doctor.  I am very encouraged after meeting with Dr. Berensen.  My current oncologist is definitely focused on more intense treatments.  It is a relief to know that there are better and less toxic options.

Dr. Berenson has referred us to the Arlington doctor, and we are working to get an appointment setup. 

Our trip to CA was a whirlwind.  We were fortunate enough to stay at our friend's home, the Kruis'.  It was great to see them again and catch up with their family.  They moved from TX to CA about 2 years ago.  

After spending 2 1/2 hours at the doctor's office, we went down to Santa Monica and had lunch on the beach.  Then we walked around a bit and enjoyed just sitting on the beach before heading back to our friend's home.

We are so thankful for all of you and your notes and prayers for me during this journey.  

Praises:

1. Trip to CA was worth it and I am encouraged about my prognosis now.
2. Got to spend some quality time with dear friends.
3. Our girls were well taken care of by my mom and John.
4. The future looks much brighter now.

Prayer Requests:

1. Pray we can get in to see this doctor in Arlington soon.
2. Pray for me to be motivated to eat better and exercise more.
3. Pray that my pain, in my spine, neck and shoulder are not lesions.
4. Pray for me to tolerate this new treatment well.

James 1:2-5

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him.

Psalm 145:17

The Lord is righteous in all his ways and kind in all his works.

“Fear not the storm, it brings healing in its wings, and when Jesus is with you in the vessel the tempest only hastens the ship to its desired haven.” - C. H. Spurgeon

“I, the preacher of this hour, beg to bear my witness that the worst days I have ever had have turned out to be my best days, and when God has seemed most cruel to me, he has then been most kind. If there is anything in this world for which I would bless him more than for anything else, it is for pain and affliction. I am sure that in these things the richest, tenderest love has been manifested to me. Our Father’s wagons rumble most heavily when they are bringing us the richest freight of the bullion of his grace. Love letters from heaven are often sent in black-edged envelopes. The cloud that is black with horror is big with mercy. Fear not the storm, it brings healing in its wings, and when Jesus is with you in the vessel the tempest only hastens the ship to its desired haven.”

“Ziklag; Or, David Encouraging Himself in God” (MTP 27, Sermon 1606, p. 373).

Including a photo of us eating brunch at a beach-side restaurant in Santa Monica as we talked over the meeting with Dr. Berenson, and one with Jason and Kelli outside their church. We got a tour of the facility to see where Jason serves as pastor.