Wednesday, June 6, 2012

Rule of the Bone

Gleevec has been a miracle drug for people with CML. CML is a slow-moving leukemia, as opposed to AML, which is what I had. My doctor put me on Gleevec to see if it would help with my chronic skin and liver issues, something my donor gives me in exchange for keeping my blood cancer-free.

I started Gleevec in early April. Five hours after taking the first dose, I woke up with extreme bone pain in my pelvis and legs. 1000 mg of Tylenol helped, but I didn't sleep much. This pain comes and goes in different bones of my lower body. I can manage it, usually.

Water retention has been nasty. I take 40 mg. of Lasix every other day. At this point, it barely makes a dent. My hands are puffy; my arms thick and hard. I weigh myself every day. Today I was just under 140 lbs. My "normal" weight is around 130.

My gums have been tender and I've had a few mild mouth sores, which means Gleevec is suppressing my immune system. 

I hope the drug is helping my liver enzymes. Since Saturday, I've had extreme bone pain in my right leg. I thought it was shin splints because I'd walked a lot all day in improper shoes. But it was only the one leg, and only hurt when I walked. Yesterday it was so painful (8 on a scale of 1-10), that I broke down and took 5 mg of Oxycodone. That was after the icing and 1000 mg of Tylenol failed to put a dent in the pain.

In 20 minutes the pain was gone. I could cook and walk the dog and get from one room to the next without wincing. But I can't live this way.I don't dare go jogging. I can probably take a yoga class.

We'll see what my doctor thinks in 2 weeks. I will have been on  Gleevec for 11 weeks. These side effects are a lot to pay if there's no improvement in my liver numbers. My skin is as bad as it was, even more itchy.


Anonymous said...

The type of stem cells that are recovered at birth from the umbilical cord and the placenta, called cord blood stem cells, are classified as hematopoietic stem cells. They are considered to be adult stem cells and are similar to those found in adult bone marrow. Hematopoietic stem cells can become any of the blood cells and cellular blood components in our body (such as white blood cells, red blood cells, platelets, etc.), but not organs (such as lungs, interior stomach lining, nervous system tissue, nerve cells from the brain, etc.). Only pluripotent stem cells have the ability to become any of the more than 220 cell types in the adult body. Banking of stem cells from cord blood is not controversial. Transplants of stem cells from cord blood represent an effective therapy for certain blood borne and genetic diseases, and have been used to treat nearly 80 serious diseases.

The usefulness of stem cells from cord blood has some limitations. First, there are simply not enough stem cells in cord blood to treat any patient who weighs more than approximately 65 pounds, generally limiting its use to children. (The smaller amount of stem cells also means that there may not be enough stem cells to give multiple treatments to a child.) Second, stem cells from cord blood – hematopoietic stem cells – are not pluripotent, which means that the potential for them to offer regenerative therapies in areas outside of blood related and certain genetic diseases in the future are somewhat limited

Ann said...

I hope your doctor has some good news for you. Hugs.

Ronni Gordon said...

Maybe you should call your doctor's office instead of waiting. Perhaps they will change the dose or take you off. Those sound like terrible side effects.