As my 120th day [March 20] Post CAR-T Treatment came and went I was feeling good generally and almost ‘buoyant’ about a future of aging gracefully—sans—Multiple Myeloma hanging over my head like a falling tree branch.
However, ‘fellow-travelers’ medicine is ‘not’ an exact science and to consider it as such is a mistake. The reason medicine can never be an exact science is US, you and me. Each and every patient has unique fingerprints, and ear shapes and retina scans so this - routinely confounds all those neat experiments that turned out perfectly in a test tube or petri dish or with two dozen lab mice….
My [early March] follow up PETSCAN showed all the right internal organs in all the right places with no abnormal growths or swelling or inflammation anywhere. Nice…then I had my usual [every] 28-day blood draw.
For some reason my immune system continues to decline without a regular boost. So, this past Thursday I had another Immunoglobulin G infusion [IgG]. **[Quote] An IgG infusion is a treatment that combines immunoglobulin cells to treat various conditions. Intravenous immunoglobulin (IVIG) is a blood product donated by people with healthy blood and a high antibody count. Each infusion is given through a vein in one arm to treat primary immunodeficiency or to increase [red cell] platelets. During the infusion, the prepared immunoglobulin flows from a bag through a tube into a vein. The procedure typically takes between 2 to 4 hours. [End Quote]
The normal range for most healthy adults is: 767 to 1590. Those are only numbers to most people, me included though I do understand a designation of ‘too-high’ or ‘too-low’. My IgG value is 494 and even with a previous infusion in January my February blood result was still only 704. Naturally on a simple bar graph my immune system is going in the wrong direction.
Now what!?
Also — you and I ask — what was the point of that October, November and December CAR-T ‘adventure’ last year? [Curious minds want to know…]
Perhaps an answer [that I may or may not like] will be next week in the form of a bone marrow biopsy. My procedure is scheduled for next Friday and it’s the third one I’ve had in the last 12 years. A local anesthetic is used to numb the area where a needle is inserted - usually in a hip or base of the spine. With the needle the nurse or lab tech can draw out a sample of bone marrow. The procedure typically lasts around 30 minutes and doesn't usually require a hospital stay.
However, examination of the sample [for proper functioning or the presence of disease or infection] takes seven to ten days. That means I won’t know how effective the CAR-T treatment was until toward the end of April. Are myeloma cells still present? If myeloma cells are present, are they old dying cells or are there new cells thriving? Will the biopsy show I’m in remission? [Talk about a soap-opera cliffhanger…]
In the meantime, since I’m the only patient I need to look after while my Myeloma team members have hundreds in their care, do I hideout? No, I can make sure that my nutrition is in balance since 70% of our immune system function is in the gut-area. This means an effective yogurt like an asodopholis/probiotic type yogurt. Not the yogurt that is more like pudding in cute cup portions, but basic dairy with live-active cultures you can flavor yourself with pure vanilla extract and fresh fruit.
And then as I have done - and others - diagnosed with nasty stuff that ‘tests’ human tolerance of - three steps forward then two back, keep moving forward? Yup, because we never know - until we know. This paradox is both the frustration of life on this rather topsy planet and the excitement. I’ll certainly let you know…
Hope my 'journey' helped you a little--feeling 'alone' w/a diagnosis isn't necessary... I'm curious as to why you have had SO MANY biopsies - so you need to ask. Sadly - because your insurance allows them your medical team is using those procedures when a full-panel blood draw should be enough to monitor your condition or treatment progress... Jump in and chat anytime - because your 'journey' may help someone else. Sherrie
Wednesday is my 5 year anniversary of my Multiple Myeloma diagnosis. Tomorrow will be 200 day out visit for my CARVYKTI CAR-T. I too am on the IVIG regimen. It has been taking about 6 weeks to drop to the 400's, low enough for another boost. I have read that it can go normal after about 6 months. I am trying to figure out how you got by with only 3 biopsies in 12 years. I had 4 last year, several at SCT, but who's counting? I have learned that they need to give me a little something to take the edge off. My M-Spike is .2, the lowest it has ever been and MRD negative in December, a first. So, I look ahead one day at a time, but 3 trips planned this year, and make the best of it. When I was in my mid 20's a wiseman told me "Things are never as they appear to be." Later I learned "Things never turn out the way you think they will."