Next Step: The Harvesting

Yesterday afternoon’s visit with Dr. Joudeh was significant for me. In fact, I made a few

notes about it in my symptom calendar because it seems like I have more trouble than usual sleeping after one of my visits with him. He covered my lab results, which I had already viewed on the patient portal, and suggested that this current cycle of chemo may be my last one, as my numbers continue to trend on the lower side of the normal range now, indicating remission. I started the fourth cycle of Revlimid yesterday and received the first Velcade injection of this cycle as well. I will have at least two more injections and finish the 14-days of Revlimid and Dexamethasone before my consultation and evaluation with Dr. Jennifer L Holter-Chakrabarty at the Stephenson Cancer Center at OU Health on the 22nd.

As usual, I came with a list of questions for him:

1. How low does my IgA serum level number need to be and for how long before we start harvesting? He answered this one before I could ask, indicating this could be my last cycle of chemo.

2. Will we do that here or will that be done at the Cancer Center? It will be done at the cancer center.

3. How long will the harvesting take?

4. How many blood draws will be necessary to get enough stem cells?

“Those are very good questions,” he said. He began to tell me how, in the past, it required a series of bone marrow biopsies.

Ugh, I thought. That would be awful.

He continued to explain that with advancements in treatment, the stem cells are extracted through a process that is similar to dialysis. Once they determine I am ready for the collection, they will likely do it through two IV’s hooked to a machine. My blood will be drawn through one IV and circulated through the machine, which will separate and collect stem cells and return my blood to my body through the other IV. I am including in this post a link to an article from Memorial Sloan Kettering Cancer Center with the best description I found of the procedure that seemed to match what Dr. Joudeh described. (1) I asked him how many sessions it might take, and he said they might be able to get what they need in one session. Always the optimist, that one. He said they will take more than what they need and freeze it in case I need another transplant in the future.

In an earlier visit, I remember he told me they will likely want to perform their own bone marrow biopsy. As long as they do it under mild anesthetic, like the first one, I’m okay with that. Once they have collected enough stem cells, the next step will be to administer a high dose of chemotherapy that will kill any remaining cancer cells as well as most of the blood cells in my bone marrow and bloodstream or my “blood factory,” as Dr. Joudeh calls it. Once that’s done, I will be ready for the transplant.

Hopefully I will get a lot of answers on the 22nd and will have a better idea of the timeline for all of this. I’m good with sooner than later.

Dr. Joudeh always asks about any symptoms that are troubling for me, and we discussed the neuropathy I continue to experience that seems to be getting worse. Lately I have episodes that occur throughout the day, and those are unpleasant enough, but when the tingling pain and numbness wakes me up at night, it’s especially wearying. I often feel it in both feet radiating up to my knees and in both hands. Most often it is on my right side that I experience it. I will wake up in the night and several fingers will be completely numb and my hand will ache. I will often roll over and hang it off the side of the bed in hopes the circulation might return. It’s not really a circulation issue, however. It’s a nerve issue.

“My question is whether the neuropathy is temporary or could it be permanent?”

“In some cases, it is permanent. But I am not so certain the chemo is responsible for all of your symptoms. You were having these issues before we started your myeloma treatment, isn’t that right?” he asked.

“Yes, I’ve had it for several years along with my back pain.”

He suggested that at least some of it is likely a result of the compression fractures in my spine and that I might benefit from an electromyography (EMG) test that measures the electrical activity of the muscles and nerves of the body, usually to an arm or a leg. He recommended a couple of neurologists, either of whom could perform the test, which could tell us if the cause might be the fractures in my back.

"At some point, you might be a candidate for a kyphoplasty.”

I’ve included a link to an article explaining this procedure as well, if you’re interested. (2) I believe it’s the same procedure my dad recently underwent for his severe back pain, and it has helped him tremendously. I agreed to see a neurologist about it.

My head is still spinning a bit from all of this. It’s still really strange to think about, that I have this cancer even though it’s been nearly three months now since my diagnosis. I’m very organized about it all, from keeping up with appointments to medication refills to insurance authorizations. Everything is happening so fast. Knowing you are reading my blog, lifting me up in prayer, and sending positive vibes my way helps me feel calm, grounded, and focused. Thank you from the bottom of my heart.

~ Kelly

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References: 1. Memorial Sloan Kettering Cancer Center: Autologous Peripheral Blood Stem Cell Harvesting, https://www.mskcc.org/cancer-care/patient-education/autologous-peripheral-blood-stem-cell-harvesting 2. Healthline – Medically reviewed by William Morrison, M.D. – Written by Ann Pietrangelo – Updated on December 1, 2017: Kyphoplasty, , https://www.healthline.com/health/bone-health/kyphoplasty