Larry’s Medical blog

Sibs,

Well, it appears like almost all the necessary poking, prodding, peeing, bleeding, and whining have been accomplished. I am scheduled for admission to UofM on Wednesday afternoon, October 3rd.

PREPARING FOR TRANSPLANT

This transplant (and maybe the next one) is a self (autologous) transplant in which they harvest my own stem cells and give them back to me after a serious dose of immune-system destroying chemotherapy. In preparation for the harvesting, I self-injected large volumes of Neupogen, a white blood cell booster. I also received a port in my chest, that I have named “Elsie” – a triple lumen catheter that will be used for drawing blood, administering chemo drugs, harvesting stem cells, and giving the stem cells back to me.

I walked into the harvesting (Apheresis) clinic last Monday with a white cell count of 42 – way beyond the normal range of 5 – 12.Based on my height and weight, we learned that my stem cell harvest goal was 6 million cells – enough for two transplants of 3 million cells.

Despite my off-the-charts white blood cell count of 42, we only collected 2.3 million cells on Monday. On Tuesday my white cell count was even higher (50!), but we only collected 1.2 million cells. Hmmmm…. On Wednesday the Apheresis clinic staff “manually” adjusted the stem cell collection process, and collected 2.7 million cells. Victory! We had 6. 2 million cells and I could stop the four-needles-a-day injections of Neupogen (which was causing painful side effects). This was the last hurdle before the Bone Marrow Transplant/Stem Cell Recovery.

ADMISSION TO THE HOSPITAL

On the afternoon of Tuesday, October 2nd, I have an outpatient visit with the transplant physician and support staff, who will outline more details of the process and answer any questions. I will also receive the infusion of the immune-system destroying chemo drug Melphelan. Then they send me home.

The next day, Wednesday October 3rd, I have an appointment at 2:30pm in which they will admit me to the hospital. I’ll be in a single room with isolation restrictions. The restrictions are not as bad as I originally thought (no masks, gowns, footies needed). They limit the number of simultaneous visitors, require visitors to wash their hands on the way into the room, restrict anyone from using my bathroom, and of course require that all visitors be healthy and not carrying any active germs.

THE TRANSPLANT

Compared to all the other stuff I’ve been through, the actual transplant is very anti-climatic. On Thursday or Friday a nurse will walk in the room with a partially filled IV bag, connect it to my IV pole, and in 20 minutes I will have received my stem cells. Ta-Da.

For the next 2 – 3 weeks, the medical staff will monitor my immune system’s recovery from the Melphalan and my progress in the areas of eating, not throwing-up too much, not having diarrhea, and having enough energy to get up-and-around. When they think my immune system is strong enough, and I am healthy enough, they’ll send me home. At that point, I begin the “100 Day Count” – 100 days of recovery from receipt of stem cells until I am healthy enough to leave the house… although special precautions may be required. More about this later.

VISITORS – IN THE HOSPITAL AND AT HOME

During my hospital stay and my recovery I cannot predict how I will be feeling or whether it is safe for me to have guests. If you feel like visiting please call Irene and check – she’ll be the gatekeeper for those decisions. Please don’t be offended if the answer is no.

Finally – we were told that I am not allowed to have any flowers or plants in my hospital room or near me at home. So, if you were thinking of anything in this category… cross it off the list.

That’s the latest news from Hamburg.

-larry

Chemotherapy Update – Cycle 6 results

Sibs,

This Monday marked the end of Chemo Cycle 6, and the completion of the Chemotherapy Phase of my treatment for Multiple Myeloma. As usual, Irene and I met with the Myeloma physician and the research assistant to review my progress and also to discuss the hand-off from the Oncology Team (we’ll have a follow-up visit with Dr. J in 10 weeks) to the Bone Marrow Transplant Team.

These last 3 weeks have been very busy – at times chaotic – intensified by a short-notice, disruptive schedule that UofM inflicted upon us mid-Cycle. This took an emotional toll on me (and Irene) as I tried to accomplish all of the pre-admission procedures, prepare myself for Transplant hospitalization, and still work full-time for the Burton Group.

How disruptive was it? In addition to the usual twice-weekly chemo infusions, other procedures included a Bone Marrow Biopsy, spine surgery (“kyphoplasty”), a spine biopsy, a cholesterol screening, an ekg, an echocardiogram, a pulmonary function test, a PET scan, a slew of x-rays, an oral exam (the Transplant Team requires a “no disease of teeth or gums” statement from your regular dentist), and separate clinic consults with Oncology, Orthopedic, and Transplant physicians. MOST of the results from all those procedures were good news; but one result requires follow-up treatment.

THE GOOD NEWS

The best news is the Bone Marrow Biopsy, which measured zero% Myeloma cell concentration in my bone marrow and resulted in the “complete remission” statement by the Cancer research team (at diagnosis in April the concentration was 40%). Other good news is that the spine surgery at L3 went well and the hip/pelvis pain that it was intended to correct is reduced (not completely gone, but better). The biopsy of the lesion in that L3 vertebrae (performed at the time of the surgery) was negative for cancer. The other tests on my heart and lungs showed “normal results” – nothing to prevent me from proceeding with the October Transplant.

THE FOLLOW-UP TREATMENT

The PET scan was normal for everything that the Transplant Team would be worried about, however there was evidence of ..something… near the valve which separates the large and small intestines {i think}. “Minimally decreased FDG uptake in the region of the bilateral femora and tibia, which is most likely physiologic/reactive.” Dr. J explained that he doubts this is anything to worry about, but since colon cancer is the number one preventable killer today AND I am due for a colonoscopy anyway that we might as well go ahead and schedule a colonoscopy prior to Transplant (with special instructions to inspect the valve and the terminus of the small intestine… a little farther {aieee !} than where a standard colonoscopy goes). Hey, I wasn’t doing anything for the next week, anyway!

BONE MARROW TRANSPLANT

Being in “remission” does not equate to being “cured.” This disease is still in my body and the best treatment includes transplant(s) to further combat the disease and extend the remission interval (and thus extend life). My hospitalization date for the autologous (self) Bone Marrow Transplant has slipped from September 24th to “one day during the first week of October.” I’ll probably be in the hospital for 3 weeks and then spend 2 – 3 months recovering at home. We still have not decided upon that second transplant, BUT – in view of my excellent chemotherapy results – Dr. J suggested an alternative in our meeting yesterday: delay the second transplant indefinitely until some future date, probably associated with the inevitable recurrence of Myeloma as it progresses from remission to an active state. {I wonder if the Bone Marrow Transplant physician, Dr. K, will concur with the Oncology physician, Dr. J’s, alternative? Stay tuned, bone marrow candidate donors Micki and Laura…}

More statistics from Dr. J yesterday on the donor transplant success rates: 20% are totally cured of the disease (hooray!!); 15% die within one year (boo!!), 20-30% suffer severe graft vs host disease (ugh!), the remainder have the same success/remission interval as a much-lower-risk self-donated transplant. As I have said before: the decision for self- vs donor- stem cells for that second transplant will not be an easy one.

WHAT HAPPENS BETWEEN NOW AND OCTOBER FIRST?

Compared to the previous three weeks, the next three weeks look absolutely boring! The aforementioned colonoscopy is not scheduled yet, but must be performed prior to September 14th or wait until at least after January. On the 14th I begin the 5 day regimen of self-injected Neupogen (4 injections per day, 1200 mg total daily) to build white blood cell counts. Bulked-up on white cells, I then begin “apheresis” (cell harvesting, filtering good stuff from blood very much like a kidney dialysis machine) which will take from 1 – 4 days depending on the volume of each day’s harvest. That leaves me with about 8 days of “nothing to do” before hospitalization – time in which I _plan_ to finalize a number of Burton Group projects before going on a leave of absence, but _suspect_ that UofM will disrupt with things we don’t even know about yet.

That’s the latest news from Hamburg,

-larry