more on pancreatitis

Apparently my cholesterol and triglycerides have been creeping up, and my doctor says that my high triglycerides probably triggered my pancreatitis. So my pancreatitis is probably unrelated to taking Neulasta.

update

My pancreatitis was "ideopathic." They don't know what caused it. Maybe it was the Neulasta, maybe meds I was on, or who knows?

loosing

I'm loosing some of the strength I gained. It's most notable in my neck.

strength status

I still have increased strength. I can often hold my head up when my arms are in my lap instead of on my armrests. I've been able to extend my arms and legs some in bed to the point of moving my hands and feet some. My thumb and little finger on my right hand are still strong.

sorry

Sorry I'm so far behind on this.

week 1 results

I was very fatigued on Monday and Tuesday. On Monday I switched to a cuffed trach so I don't have to work to keep the air from my vent in my lungs. Tuesday night I realized that the bone aches were gone. I've been exercising every muscle I can just by flexing it since the injection. Even on Sunday night I felt a bit stronger, but I didn't expect any stem cell results this soon. From what I've read, the mere presence of stem cells around existing neurons makes the neurons a bit healthier, so that's what I think is happening. This morning (Thursday) I do think I could feel more strength in my quads, abs, and fingers of my left hand, among other muscles. Keep praying for good results.

more on Neulasta

Any doctor can order Neulasta and anyone trained to give subcutaneous injections can give it. It comes in a prefilled syringe. Everyone gets this same, standard dose. I'm doing this on my own, not as part of a study. I wouldn't expect to find anything on the web about treating ALS with Neulasta. The medical community would consider any results I have "anecdotal," but anecdotal results could lead to a formal trial. Filgrastem (Neupogen) is given as one injection each day for ten days. Pegfilgrastem (Neulasta) is a "peggelated" form of the same drug. As I understand it, that means that a time release molecule is attached to each molecule of med so only one injection is needed and the med is released over the next ten days. Yesterday (Sunday) the bone aches moved beyond my pelvis to my legs, arms, and shoulderblades. That means the Neulasta is doing what it should in my marrow.

first side effects

The most common side effects of Neulasta are bone aches, flu like symptoms, and nausea/vomiting. At 24 hours after the injection I had only a slight headache. At +30 hours I noticed aches in my pelvis, which I expected because the pelvis is one of the biggest repositories of marrow. I've read that bone aches are common because the drug makes the marrow work harder. I noticed that when I got stressed my pelvis started throbbing and the throbbing aches went up my spine. Just a thought, maybe stem cells from marrow in the vertebrae would move directly into the spinal fluid. Friday morning Tylenol didn't help the ache so I had half a Percocet, which helped some. Saturday morning I started with a whole Percocet which made the ache almost unnoticeable. I want to try to get by on Tylenol because Percocet is a narcotic, so tomorrow it's back to Tylenol. It will probably be at least a couple of weeks before there is any increase in strength, maybe several weeks.

background

A little known side effect of bone marrow transplant is that some marrow stem cells cross the blood brain barrier, turn into neurons, and integrate into the CNS. Stem cells migrate to damaged areas, drawn by chemical signals. One way to use this is to use the drug Neulasta which kicks stem cells out of the marrow and into the blood. I'm planning to take Neulasta on 1/19/05. It's a time release med which only needs one injection and is released over the next ten days. There's no telling how much of a bounce in strength I may get or how long it may last. It's never been done. For other PALS who may want to do this, the one injection costs US$2600. It's made by Amgen. This is experimental so insurance probably won't pay for it.