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From the family, with great sadness

ROBERT WAYNE JERNIGAN (age 66) Bob Jernigan passed away on Tuesday, January 16, 2018  at home with his family. A Florida native, he earned his Ph.D. from the University of South Florida where he met his beloved wife, Rose. The couple moved to D.C. in 1978 when Robert began his accomplished 39-year tenure as a professor of mathematics and statistics at American University. As a productive scholar, he received numerous distinguished awards, including the American University Scholar-Teacher of the Year Award, co-developed an innovative statistical test now known as the Munson-Jernigan Test, collaborated with the EPA and the Smithsonian, provided exceptional service to the university and his field, and generated inventive teaching techniques. He was an avid cyclist, artist (photography, sketching, and watercolors), Orioles fan, lover of all gadgets and gizmos, kayaker, reader, and seeker of knowledge.  His family cherishes his memory: wife, Rose; children, Nick J...

Running out of Options

My treatment with Daratumumab has been severe and and yet not working. This blog was supposed to be about the transplant.  It is likely that these drugs, to get my myeloma under control, my not get me to the transplant. We should know more this Tuesday after another appointment with my oncologist.

Another Postponement

As you may recall from the previous post (August 14). We went to Baltimore today to consult with my myeloma physician. In mid November we received some more unsettling news, and as before tempered with a way forward. It seems that once again my blood test numbers indicated that the level of disease in my marrow was too high for a stem cell transplant to have the best chance of success, at this time. The two newer, and stronger Two of the chemotherapy drugs that I have been taking ( Kyprolis  and  Pomalyst ) have, after three months, stopped working at controlling my disease. My physician advised that we shift to two even newer, stronger medications . These medications are taken for three weeks and then off for a week. This is called a cycle. My stem cell transplant is now postponed until these new medications can get my myeloma more under control. This could mean two or three cycles, making my transplant more likely for mid to late December or early January. Thank ...
The summer chemo , that I had mentioned in August, failed to control my myeloma. I will soon start new chemo, actually a monclonal antibody called Daratumumab , in hopes of controlling the myeloma so that I can proceed towards the stem cell transplant. Too Much Information I had a bone marrow biopsy this past August. It showed a level of disease in my blood that was too great to give the transplant the best chance of success. The transplant was postponed and new chemo prescribed for the next three months in hopes of better controlling my myeloma . From September through November I would be taking Kyrolis , Pomalyst , and Dexamethasone . Kyprolis hit me hard. My wife says it "kicked my butt!" with exhaustion, fatigue, and lack of energy for 2 to 3 days after second of each week's two Kyprolis infusions. In the end it didn't work! After this round of months of Kyrolis, Pomalyst, and Dexamethasone, I again went to Baltimore for another attempt at the b...

Postponement

We went to Baltimore today to consult with my myeloma physician. We received some unsettling news, tempered with a way forward. It seems that my bone marrow biopsy indicated that the level of disease in my marrow is too high for a stem cell transplant to have the best chance of success, at this time. Two of the chemotherapy drugs that I have been taking ( Revlimid and Velcade ) have, for some time, stopped working at controlling my disease. My physician advised that we shift to two newer, stronger medications ( Kyprolis and Pomalyst ). These medications are taken for three weeks and then off for a week. This is called a cycle. My stem cell transplant is now postponed until these new medications can get my myeloma more under control. This could mean two or three cycles, making my transplant more likely for mid to late November. Thank all who have read the blog and offered me their good thoughts. Daily updates to the blog are no longer needed. I will perhaps post monthly betwee...

But Maybe You Knew This Already

No new tests today, just one finding from my head CT: " Limited imaging through the brain is unremarkable".

I Won't Be Able To Tend My Mushroom Farm

The title above was one piece of advice we learned today at the Transplant Education Class. No, I don't have a mushroom farm. This season we don't even have tomato plants or basil. We do have a thriving fig tree. Of course, the title does brings to mind the comment about the workplace that is said to be like a mushroom farm: it keeps all involved in the dark and feeds them...Well, you know. In addition to the Education Class, I also had a physical. I've got to be healthy enough for the treatment to kill my immune system and restore it! We had a very good lunch at Bagby Pizza on Fleet Street in Fells Point, Baltimore. Too Much Information We learned that the chemotherapy drug cytoxan can have positive benefits by tricking a body into making a lot of stem cells. This process is called mobilization. Cytoxan is used along with the growth factor medicine Neupogen . Together they can sometimes cause short term pain in large bones. To relieve this pain, the allergy ...

Yet Another Testing Day

We woke up early today for a trip to Baltimore. On my schedule were lab tests and a bone marrow biopsy. But it turns out there were no lab tests to get, so we got up earlier than we needed. The biopsy didn't happen until close to noon. All went well. Too Much Information: Under sedation, a hole was drilled into the back of my hipbone and a vacuum filled vial extracted the marrow, since, of course, nature abhors a vacuum. (Wait, a vacuum filled vial? What sense does that make? You can't fill a vial with a vacuum. I guess I should have written the vial  contains a vacuum, like the Container Store's slogan "Contain Yourself"). Luckily, I was sedated and felt little pain. I've had this done before without the sedation. I wouldn't recommend it. In either case.

Another Testing Day

The week of preparatory tests continued today, designed to make sure I am healthy enough to go through with the transplant. That's really all that happened today. For the Too Much Information Crowd, today's list of tests follows: It started a 8am with quick  CT-scans of my sinuses and my chest. Then a pulmonary function test . They sat me in a large clear plastic chamber and asked me to take the deepest breaths I could and then exhale as fully as I could while the technician shouted "Not yet, not yet, not yet, ok," much too slowly! Then it was on to a cardiac echo . This technician irritated me, because I irritated him, since I was unable to lie on my left side due to my healing(?) collarbone. Hey, we do what we can do! Next up was an EKG . This should have been quick, but the technician was a bit confused with a new machine she used and after my suggestion called in someone to help. She did have one very useful idea: she used alcohol wipes to remove the sti...

Rose's First Blog Post

Hello everyone.  This is Rose blogging for the first time.  Today we had a pleasant drive (I like sarcasm) downtown in a bunch of rain for Bob's Pet Scan .  No it's not about the cat.  Bob did not have any carbs for 24 hours and he was a bit cranky.  He says not-- but I was there.We are currently at home and eating lots of carbs (pound cake). All went well at test.

Bob's Stem Cell Transplant Blog

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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...