Upbeat:
Love your name! Dad was diagnosed December 2005 thru a routine blood test for a routine physical. His regular doctor then sent him to a hematologist who immediatley did a bone marrow biopsy. It was ONLY AFTER the biopsy that my parents sent out an e-mail informing us (their kids) what had taken place. To make a LONG story short; Dad wanted me with him when he learned the results of his biopsy. I am the only one of their 5 children who work in health care. He was hoping, I think, that I would have answers. I was VERY disappointed with the attitude and the dismissive behavior of his original hematologist, and used all my contacts to secure a wonderful, caring, and knowledgable hematologist. Again, not liking the diagnoses myself, I again used all my contacts to procure "visiting hours" at the residents library in our hospital and password codes to journals, research and study logs. All this information can be found in any good library or if you have alot of time and energy some you can find on the net. Dad just turned 70 in December 2005. I have worked in health care for nearly 17 years and if it's one thing I KNOW for a FACT - ONLY AN IDIOT WILL NOT QUESTION THEIR PHYSICIAN. Get the facts! NOT everything that heals is from the pharmacy. I'm not saying that there are NO treatments available, they seem to be making progress each day. HOWEVER... When you factor AGE and diease progression...I think it's a personal choice. The current Revalmid studies are coming back negative. High drop out numbers due to side effects. Get the reports at NCI. This is not a "wonder" drug. Unless of course after getting the information on the study and you read the 4 pages of side effects do you "wonder" why they think this is a good thing? Sorry, on my soap box again.
Dad's spleen has been enlarged for some time. It is palpable and visual. The CT scan shows a large mass (hemopetiesis) in the spleen. This happens when there is no bone marrow in the bones and the organs are trying to "make" marrow. Eventually, this will cross over into the liver and enlarge it also. Should this happen, he will experience jaundice, portal hypertension and be prone to clotting. (strokes, embolisms). He will also have increased joint pain in the shoulders and upper legs and the bone scars down on it self. They tell us there's no cure. They tell us since he's 70 BMT will not be considered. Still, we fight. No one lives forever, and my family is comfortable with that. But until it's time to "turn off the lights and go home", we'll be in the trenches fighting, researching and trying. Our labs have been holding steady for the last 2 months. RBC 5.34 and WBC 1.23. He's not up to a 26K marathon, but then he says, he wasn't before either! Still doing weekly labs. I'm not sure if it will help you, but here's what I look for.
If HCT is INCREASED or normal = INCREASED chance of clots.
Increase in Leukocyte Alkaline Phosphate falls as diease worsens.
Increase in serum uric acid as diease worsens
Increase in Indirect bilirubin = RBC destruction.
Increase in LDH = inefective cell destruction
If Platelets fall below 20,000m3, and HGB is below 7.0/g and HCT below 21% transfusions may be necessary.
Everytime we draw a steady lab we're greatful and the party's on, light the grill, put the ice cream maker in the sink. Taking it one day at a time. Living for QUALITY not quantity. So far we've beat the odds already! His original "all knowing md" only gave him 2- 3 months. I LOVE to PROVE them wrong. KEEP THAT TEMPO GOING UPBEAT! I'm with ya. Radiationruth