Stem Cell Collection

In preparation for autologous blood stem cell transplant after 2024, I had my red blood stem cells harvested. The procedure was successful and that is the bottom line. That final tally was the result of very many debits and credits. Even though we had this planned months ago, when I was wheeled from the transplant clinic to the main hospital to be taken to radiology for the placement of a catheter, the main desk asked if I was a walk-in. It took them a couple of hours to find a file folder with papers that then were entered into a computer file. That was just one event.

 

I went to the Sarah Cannon Clinic at Methodist Hospital in San Antonio about 68 miles from home because the Sarah Cannon Clinic at St. David’s Hospital in Austin about 18 miles away will not harvest and store. At Methodist they were proud to tell me that they store stem cells for the other clinic. I do not know why that treatment was denied to me in Austin but it was. “We do not harvest and store. If we harvest, we use them.” So, we scheduled treatment down the road. 

 

I met Methodist Hospital last year, after my initial diagnosis because the arithmetic of chance favors the second opinion. I have been happy to be treated here in Kyle because the office of Texas Oncology here is a short walk through a city park. It is very convenient. Even so, the second opinion has been helpful. (See “The Monty Hall Problem” on Wikipedia and elsewhere.) It validated the treatment regimens and provided additional insights. So, I have been back half a dozen times for lab tests and consultations. 

All along, I have taken as much charge of my treatment as I have bandwidth for. I bought textbooks and a microscope just for orientation because I never paid much attention to life sciences. I got a book from the UT library on oncology nursing just to read twenty pages on myeloma and Revlamid® (lenalidomide). You really have to ask the right questions to get any answer and many doctors control the flow of information according to their own standards. My primary oncologist assured me that this will not require chemotherapy and we will do it with monoclonal antibodies. He sounded like Dr. McCoy. Well, it is chemotherapy; I just don’t lose my hair (yet). And right now the FDA approves monoclonal antibodies only when two other courses have failed. So, OK, I got over that last year.

 

This time, the sugar coating was on the collection catheter, a Quinton line. I should have looked it up. “Oh, we’re just going to put a tube in your neck to collect blood...” In my neck, indeed, it went into my jugular and down to my superior vena cava. That much was fine, after all. It took two imaging systems (CT and fluoroscope) and an MD to place it. (I enjoyed listening to him cluck as he drove the twisty turny lane. I knew that he could do it.) “So,” I asked, “they can just take this out at the clinic?” Oh, yes, I was assured, after they remove it, they just hold the place shut for five minutes. Well, it was ten minutes and 30 minutes no talking lying flat to make sure that it is not bleeding out and I have dressings to wear for 72 hours and I cannot lift more than five pounds. All of which is going to impact my first day of work on a new job Monday. Who knew? 

All in all, there are worse outcomes. I am reminded of a comedian I saw on a late night show who told of a woman seated next to him on an airliner, on a telephone, telling her friend about having “the worst day of my life” while reclining in a cushioned couch at 38,000 feet, traveling 80% the speed of sound. 

 

My daughter reminded me of Adm. William H. McRaven’s parable of the sugar cookie. (See "Make Your Bed.") Other people tell it differently but for McRaven the point was that being chosen to be hosed down and rolled in the sand and spending the rest of the day covered like a sugar cookie has nothing to do with any choice you made. You could not have seen it coming and you could not have avoided it. It just happened to you. Sometimes, life is like that. So, get over it.

 

And on the assets side, every one of the nurses and assistants who were my direct caregivers were capable, informative, engaging, and supportive. I enjoyed talking to all of them. Not only do I like talking about myself but I am pretty good at interviewing and I ask a lot of questions. One of my radiologists was injured in college sports and went back for a second degree. One of the consulting oncologists was a Navy doctor. I had at least a dozen great interactions over the past three months.  

  

I have been told that there are many ways to view multiple myeloma. “This is not like breast cancer. You don’t have a lot of options here. This thing is just going to run its course.” On the other hand: “Think of it like diabetes: just something you have to manage for the rest of your life.” When I was diagnosed my initial research warned me that almost half of patients have an expected end-of-life of less than one year. It is also true that the other half, 52% or more, live ten years and more. The statistical tail on the right is getting longer. 

 

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“Every doctor tells me something different,” I said.

The doctor replied, “That’s why we call them opinions.”

We benefited from a daylong conference about multiple myeloma hosted by the HealthTree Foundation of Lehi, Utah, and held at the Thompson Conference Center on the UT Austin  campus. Four oncologists presented guidelines, recommendations, and recent findings in both morning and afternoon sessions. At lunch, two of them joined us at our table. Overall, I am looking forward to a longer timeline in a better situational context. Most encouraging was that my new goal of ten years will likely include alternative options and improved treatments. In fact, for the oncologist one of the challenges is the long list of approved drugs already available. For the patient, each one comes with an array of annoying or debilitating side effects from diarrhea to blindness and coronary arrest. That being as it may, the conference started out with a strong positive statement about the ongoing research: “It is a story of hope.”

 

It is also important to consider whatever else might ail you. “Try to avoid the chronic health issues of a fulltime patient” such as diabetes and high blood pressure. That speaks to the sociology of oncology. Treatments are not so readily available for those lacking social capital. Of the fifty or so attendees, every one looked like us: middle class people with health insurance. Nonetheless, I am in a support group that meets (virtually) once a month and of the ten or twelve of us, we have ten or twelve different stories. My catchphrase is: “Predictions are statistical; outcomes are individual.”

 

When the Plague struck, I mixed every concoction I could think of and half of my patients died by my hand and the ones who survived called me their savior. -- Faust

 

Hier war die Arzeney, die Patienten starben,

Und niemand fragte: wer genas?

So haben wir, mit höllischen Latwergen,

In diesen Thälern, diesen Bergen,

Weit schlimmer als die Pest getobt.

Ich habe selbst den Gift an Tausende gegeben,

Sie welkten hin, ich muß erleben

Daß man die frechen Mörder lobt.

Faust, Erster Teil, Vor dem Thor.

 

This was our medicine; the patients died,

“Who were restored?” none cared to ask.

With our infernal mixture thus, ere long,

These hills and peaceful vales among,

We rag'd more fiercely than the pest;

Myself the deadly poison did to thousands give;

They pined away, I yet must live,

To hear the reckless murderers blest.

Faust, Part I. Before the City Gate.

Translated by Bayard Taylor 

 

Having moved 25 km south of Austin, I decided to find a cardiologist closer to home. The first one spent so little time with me–not 120 full seconds—that when I got down to my car, I stopped, turned around and went back in to insist on a consultation. I asked specifically about the side effects of oncology treatments and he was surprised. So, he set an appointment with another specialist. 

 

I told that specialist that I have no knowledge of my own anatomy. Speaking to each other at the same time, I asked if I have a mitral valve prolapse—“Do you have a mitral valve prolapse?”—or a bicuspid aorta—“Do you have a bicuspid aorta?”—and how does the murmur sound—“Do you have a murmer?” He stopped. “You are asking me while I am asking you.” 

Yes. I had an echo cardiogram the other day. Everyone listens to my heart. What can you tell me? 

“We will know more when you have a CT scan.”

 

On the way home, I remembered “The Little Black Bag” by Cyril M. Kornbluth. 

 

I forget things and that concerns me. So, I scheduled an Alzheimer’s assessment with a neurologist. I passed. She said that I have only (mild) age-related cognitive impairment. “It’s normal,” she said. “I don’t believe that it is normal,” I replied. “People like you never do,” she said. 

 

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Tell him your plans.

 

I have been diagnosed with multiple myeloma, a form of cancer in some cells found in the bone marrow. It is not survivable. The best outcome is four relapses with increasingly aggressive responses for a survival of greater than five years. However, 46% of patients do not make it through six months. My oncologist’s best one-liner is “We will know more in four months.”

 

I had been planning to have prostate reduction surgery for over two years. In November 2019, my urologist suggested a less invasive procedure and he set me up with another urologist for a consultation. That specialist's plan was to insert glass beads into the artery feeding the prostate thus causing the prostate to stop growing. The treatment is popular in the national health care systems of the Mediterranean tier. (See below re Europe.) The problem is that beads get lost, flow elsewhere, and cause strokes and infarctions. Plus, the path in is not through the femoral artery but following the arteries in my arm through my chest and down into my prostate. It just did not seem like a good plan. So, it was back to square one. Then Covid-19 happened. 

 

So here I am 30 months later, vaccinated and boosted and ready for the surgeon. We discussed  laser ablation and laser cauterization and I tossed a coin. The urologist wanted to make sure that there was no cancer in the prostate right now. On 29 May I had an MRI scan. The prostate was good. However, the MRI revealed a problem with the bones of the hip (ilium). The MRI was followed by a computerized tomography (CT), previously known as computer-assisted tomography (CAT). The CT of 20 June revealed a “secondary malignant neoplasm of bone.” 

 

They said: “OSSEOUS STRUCTURES AND SOFT TISSUES: Multiple lytic lesions are scattered throughout the axial skeleton, the largest is expansile and in the right iliac bone measuring 8.7 x 3.4 cm. … Multiple scattered lytic lesions are seen throughout the axial skeleton, which are nonspecific, but suspicious for multiple myeloma or metastases.” And there were some other findings of lesser consequence (in my opinion). 

 

My urologist explained that I should read some reliable websites such as the Mayo Clinic, that the multiple myeloma is treated with monoclonal antibodies, after an immunomodulatory agent with a proteosome inhibitor. And he referred me to an oncologist and we met on 30 June.

 

The oncologist set me up for a sedated biopsy on 13 July.  On 20 July, I met again the oncologist to discuss the evaluation of the biopsy and the plan of treatment. (I was not in doubt about the need.) Fortunately, he has two area offices and one is within walking distance of my home. In fact, I was assured that I could walk myself in and back after each treatment session. 

 

But he was less than candid. 

 

Laurel said that they want to be positive and upbeat and therefore somewhat vague about the downsides because we all know that attitude is important to recovery. The fact is that he lied by withholding the truth. He told me that treatment will not require chemotherapy. It will be by monoclonal antibodies: two pills and a shot every 21 days for four months. In point of fact, the treatment is chemotherapy: Lenalidomide plus Bortezomib plus Dexamethasone. I will be nauseous and fatigued. I just will not lose my hair. I will be at risk for other infections, anemia, both bleeding and clotting, and neuropathy.

 

After the chemotherapy, assuming that I have responded well, then the monoclonal antibodies are injected in order to rebalance the antibodies created by the cells that are now overproductive.

 

“Antibodies are produced by B lymphocytes, each expressing only one class of light chain. Once set, light chain class remains fixed for the life of the B lymphocyte. In a healthy individual, the total kappa-to-lambda ratio is roughly 2:1 in serum (measuring intact whole antibodies) or 1:1.5 if measuring free light chains, with a highly divergent ratio indicative of neoplasm. -- https://en.wikipedia.org/wiki/Immunoglobulin_light_chain )

 

It is scary when Wikipedia is more informative than your doctor. To be fair, he did draw a divergent Y with a little K and a little L (though he did not use the Greek letters).

 

For myself, I feel that I am behind the curve, trying to find what to read. The oncologist gave me about 100 pages from Wolters Kluwer update dot com website. All I have is the paper printout not access to the website because I am not a professional provider. So, I do a lot of flipping back and forth to find definitions. I asked for a second opinion and mentioned the “goat behind door number two” and he seemed to understand the allusion. He promised to follow up with the University of Texas Medical School. (I think that they graduated their first class just two years ago. I watched the new buildings go up. The last medical research I did in 2014 was at their so-called medical library wrapped around a spiral stairway inside the Texas Tower on campus.) Anyway, I have not heard back from that person. So, this weekend, I started from scratch and made appointments at M D Anderson.

 

I do not respond well be being addressed like a child. The reassuring singy-songy voice just brings out the worst in me and I still owe the nurse practitioner (MSN APRN FNP-C AOCNP) an apology. She called me back the other day with information that she forgot to give me when we met. She said that she did not know how she could have forgotten and I confess that I did not remind her of that moment. 

Europe: What a sense of humor. In most European nations, people my age do not get treatment for this. It is considered a normal end of life. How else do you provide free healthcare for everyone?

 

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