6-30-24

The drug (Imetelstat)trial R continued at Fret Hutchinson Cancer Center in Seattle this week. Most of R’s blood work results remain stable, but the ones the doctors care about most (white and red blood cells, platelets and more specifically, neutrophils–part of the white cells)–stay stable for a while then drop a bit. Over time they’ve dropped quite a bit. For example, he started out with white blood cells at 6.47. The normal range is 4.3-10. R is now at 1.21. There’s a lot of information below. Hope it’s not too much. Consider it an education.

Descriptions of 3 other blood work indicators the doctors consider essential follow:

Hematocrit measures the proportion of red blood cells in the body. Red blood cells carry oxygen throughout the body. Having too few or too many of them can indicate certain diseases. The normal range is 38-50%. R is currently at 27%.

Hemoglobin measures the amount of a protein in red blood cells. It carries oxygen to the body’s organs and tissues when you breathe in. Then it carries the waste gas carbon dioxide back to the lungs to be breathed out. If a hemoglobin test shows that the hemoglobin level is lower than it should be, it’s a sign of anemia. The normal range is 13-18. R is at 9.4.

From the Cleveland Clinic:

Lactate dehydrogenase (LDH) is an important enzyme that helps with cellular respiration, the process through which your body transforms glucose (sugar) from the food you eat into energy for your cells.

Enzymes are proteins that help speed up metabolism or the chemical reactions in your body. They build some substances and break others down.

You have LDH in almost all of the tissues in your body. Its highest concentrations are in your muscles, liver, kidneys and red blood cells.

As new cells form in tissues, your body eliminates older or “dead” cells. This normal process causes your tissues to release LDH into your bloodstream or other body fluids. Because of this, it’s normal to have some LDH in a blood or fluid sample at all times.

A high LDH number CAN indicate cancer somewhere in the body. Anything less than 210 is normal. R is at 614, but he’s been as high as 769. It recently went down to the 400s but popped back up.

So what does this mean? The Imetelstat is not working yet. R’s anemia and LDH are not improving. Until the anemia is gone, the doctors won’t increase the dosage of the medication he’s on to shrink his spleen. Shrinking the spleen matters because a patient has better results from a bone marrow transplant when the spleen is standard size.

Someone asked me recently, “Why can’t they remove the spleen if it’s so big?” (1) Studies show there’s a high incidence of mortality (9%) post-surgery. (2) Newly acquired health issues (in 31% of patients), predominantly thrombocytosis (too many platelets in the blood), occur in patients who have their spleens removed (splenectomy).

In one study, among the 203 patients who survived the surgery, the median post-splenectomy survival time was 27 months.

So, back to what now? WE’RE AT A FORK IN THE ROAD.

The plan is to give the Imtelstat a few more months to bring about an improvement in R’s anemia and LDH levels. If that happens, he’ll continue on the study. If it does NOT happen, he’ll stop the study, and the doctor will put him on a different oral medication to see if it makes a difference.

That’s as far in the future as we can figure out. Beyond that, who knows?

R continues to feel pretty good, other than having severe fatigue. He has days when his body temperature is all over the place–hot, cold, hot, cold. He’s not eating much, but he’s not losing weight either. Could be from the spleen growing? He’ll have another ultrasound soon to correctly measure the size of the spleen and see how it’s progressed, for better or worse.

Love to all for their unending support.

PS: R plans to beat this thing. And I plan to stick by his side like peanut butter on toast.