Bob's Stem Cell Transplant Blog

We know that many reading this blog either care or just wonder how I am doing with my stem cell transplant. We know that perhaps you may like to call and check on my progress, but realize we may not be available to take your calls.

So we have prepared this blog to give, it is hoped, a day-by-day posting of how I am doing. I will try to do the posting myself every day. It will give me a focus, a goal, and help me summon the energy to do something productive. On the days I can't post, Rose will be doing the posting.

The month of August is full of tests, education classes, diagnostic studies, biopsies, and a minor preparatory surgery. The stem cell transplant itself  will occur over three days, September 3-5. The infusion of my MILs (more on that below) will occur over two days, September 7 and 8. After that it will be months of monitoring, testing, and recovery. We expect to be living in hospital connected housing in Baltimore for 4 to 6 weeks starting around August 26. Then we will head home for months of recovery with many return trips to Baltimore.

Please do not send gifts. Flowers, plants, and fruit are actually forbidden due to possible bacterial contamination. Please feel free to e-mail me, I'm just not sure how quickly I will be able to respond. Please don't ask in an e-mail how I am doing. I hope you can learn that from the blog. But I would welcome news about work or families, just not politics.

So that you can keep score at home, we've also prepared some fun for you with the BINGO card above. The first person who regularly reads the blog and finds the words above in a pattern of five in a row horizontally, vertically, or diagonally wins the prize. The prize? The winner gets the honor of delivering to us in Baltimore whatever provision we might need at the moment! That should make you all want to play!

Please wish me luck,
Bob

P.S. At times you may think "Too much information!" But I hope that long after I've recovered, this blog might help future patients know what to expect.

So, what will be happening?

In the Spring of 2009, I was nagged by unusual back pain. I'd had disc problems most of my life and even back surgeries to relieve the pain, but this felt different. It was a deeper pain. My HMO physician ordered a more thorough set of blood tests. The diagnosis came back as multiple myeloma a blood cancer of the plasma cells, a type of white blood cell that produces antibodies. After more tests, within 2 weeks, I was placed on two oral medications:  lenalidomide (trade name Revlimid) approved by the FDA in 2004 and a steroid dexamethasone. These kept my disease and symptoms in check until the Fall of 2016 when bortezomib (trade name Velcade) was added. 

I was informed early on that, at some point, these drugs would no longer work as before and a stem cell transplant would be needed. After my diagnosis this was expected for the Fall of 2009, but I had done so well on the oral medications that the advice was to continue until these drugs failed. That time has come.

In the first week of September 2017, I will be undergoing, at Johns Hopkins in Baltimore, an autologous stem cell transplant, meaning my own stem cells will be used. The procedure is described below, edited from Wikipedia:

Autologous HSCT requires the extraction ... of stem cells (HSC) from the patient and storage of the harvested cells in a freezer. The patient is then treated with high-dose chemotherapy ... with the intention of eradicating the patient's malignant cell population at the cost of partial or complete ... destruction of patient's bone marrow's ability to grow new blood cells. The patient's own stored stem cells are then transfused into his/her bloodstream, where they replace destroyed tissue and resume the patient's normal blood cell production.

Fortunately, I have been selected for a clinical trial that includes an exciting new additional therapy, CAR-T cell immunotherapy. This is the immunotherapy that was recently approved by the FDA for leukemia for children and young adults. There it has found to have amazingly positive results. 

CAR-T stands for Chimeric Antigen Receptor. In this procedure, lymphocytes (white blood cells) were taken from the marrow of my hips in late June of 2017. These T cells are called marrow infiltrating lymphocytes, MILs. The next steps are explained below, from the National Cancer Institute:

T cells, a type of immune cell [are] collected from the patient’s own blood. After collection, the T cells are genetically engineered to produce special receptors on their surface called chimeric antigen receptors (CARs). CARs are proteins that allow the T cells to recognize a specific protein (antigen) on tumor cells. These engineered CAR T cells are then grown in the laboratory until they number in the billions.The expanded population of CAR T cells is then infused into the patient. After the infusion, if all goes as planned, the T cells multiply in the patient’s body and, with guidance from their engineered receptor, recognize and kill cancer cells that harbor the antigen on their surfaces.

The clinical trial has two arms. In the active arm, the modified MILs are given back at the same time as the transplant. In the other arm, the modified MILs are kept and returned to the patient only after their myeloma turns ugly again. This could be months or years.

I was lucky enough to be randomly assigned to the active arm and will be receiving my MILs at the time of of stem cell treatment.

This add-on treatment to the stem cell transplant is hoped to give me a longer survival time.