Karl's Multiple Myeloma Journey

Today is T + 13. When I wrote last we were concerned about an echocardiogram that was ordered to ensure that the staph bacteria wasn't growing on his heart valves. It wasn't! All good. The Pip/Taz antibiotic was discontinued. Karl is still on the other antibiotic, and will be for at least 10 or more days. Today his liver enzymes were up, and it is thought that might be because of a reaction between the antibiotic and the Parkinson's medication he takes. The Parkinson's medication will be held to see if the liver enzyme thing resolves itself.  Karl hasn't needed any more platelets, but he is still getting phosphates (via iv), potassium (via iv), and calcium (via a pill). Up until this morning he was also getting iv fluids to ensure that he wouldn't get dehydrated. That was stopped on the condition that he make sure he drinks at least a liter of water a day. He is eating and drinking a little, but not enough. He is consciously trying to increase both, but it hurts...

 Today is T + 10. Since I last posted Karl has had a hard couple of days. He had a fever three nights ago, which meant he was put on antibiotics right away (Pip/taz), and blood was taken to be cultured. The culture came back Gram Positive Cocci... means nothing to me...but they added another antibiotic. The doctor's first choice was Vancomyecin, but Karl has had reactions to that, so another antibiotic was chosen. Then that one got nixed by pharmacy because it could possibly interfere with something else Karl takes. I have no idea what antibiotic he is on right now in addition to the Pip/taz, although we were told and I could have been smart and taken a photo of the label as it hung on the iv pole, but I didn't. Today the cultures came back telling us that the bacteria found in Karl's blood is a form of staphylococcus. He will continue to get the new iv antibiotic for 14 days from yesterday as long as he progresses and the echocardiogram they have ordered doesn't show a...

Today is T + 5, and this morning Karl's white blood cells were measured to be 0.1, with the neutrophils making up 0.08 of that 0.1. The white cells would likely have been zero had they been measured later in the day. This is perfectly normal and expected in a bone marrow transplant. Melphalan was given on day T -1 to kill the bone marrow, which produces the blood cells, and the white cells only live a matter of days in the body before they are replaced with new ones....so since Karl's old bone marrow can't produce cells now... Today there was something new in the transplant process didn't happen last time. Karl was given Neupogen this morning, and will have Neupogen for the next 4 days. This is a drug that helps boost the production of white blood cells. Karl was given this drug 8 years ago to help boost stem cell production before the stem cell harvest, but he wasn't given it during the transplant. There are always new studies showing more effective processes. Than...

 At around ten am this morning the activity started in Karl's room. People from the lab came with special warmers that they filled with chemicals, and then they left. Nurses came with lots of anti meds...antivirals, antifungal, antinausea...plus dexamethasone and I can't remember what else. Some given orally. Some given through iv along with the fluids that have been constantly running since Tuesday. Then the lab personnel came back with Karl's stem cells in a portable freezer. They had been frozen for the past seven and a half years. She told us that the freezers that store cells like these are checked every thirty minutes to ensure they are working properly. At about five to eleven the room filled up. The person from the lab (I don't know her title), 2 RNs, a NP, three nursing students, and me. And of course Karl. We all watched as the two bags of cells were put in the warmer, massaged a little, and then hung on the iv pole. They dripped into Karl via his port in just...

Before the update, thanks to everyone who reached out with messages and comments. I read each of them to Karl today and we felt very uplifted. We were especially comforted by the comments from people who have gone through the multiple myeloma fight with their loved ones. A few tears seeped out when I read the comments from Jane W, Deb D, and Rosalind Y. Hugs.  Now an update. Last night Karl was started on iv fluids that will continue for at least another 24 hours. Last night was in preparation for the Melphalan, today is to counteract the Melphalan, and tomorrow is more of the same plus to keep him hydrated in preparation for his stem cells. But that's for tomorrow.  Today the focus was Melphalan, a chemo drug used to kill his old bone marrow, where his cancer was living and growing. It has lots of harsh side effects including wrecking havoc with the digestive tract from the top to bottom. The top includes potential mouth sores which were counteracted with special mouth wash, ...

If you have followed Karl's journey with Multiple Myeloma you will know that he was diagnosed in March, 2017 and had a stem cell transplant in December of that same year. After the transplant Karl took an oral maintenance chemo, Lenolidamide, for 7 years and therefore was able to stay away from iv chemo. That changed in February of this year when he started iv chemo using Isatuxamab, Carfilzomib, and Dexamethasone. Karl's myeloma has historically mainly affected his monoclonal proteins (m-proteins), which are abnormal proteins produced in his body as a result of the cancer. At diagnosis his m-proteins were a little over 12. These were knocked down to half prior to the first stem cell transplant, and after the transplant were measured to be 1.5. These start growing again right away, but for Karl they grew exponentially. That is to say very slowly at first with a very low almost horizontal curve, and in the past year quickly with more of a vertical curve. In March of 2024 they ...