CancerCompass message board discussion started by Radiationruth on 1/28/2006 http://www.cancercompass.com/message-board/message/all,4309,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ HELP! My father who is 70 was just "diagnosed" with ideopathic myelo just last week. I have worked in health care for 16 years and while we waited on the bone marrow reports to come back, I spent more time in the medical library at my hospital than most of the residents did. I think I have tried to absorb every aspect of this diease and it's progression. Unfortunately, my father lives 4 hours away from me and was referred to a hematologist/oncologist in my home town. When I learned whom it was, I was, to say the least, very unimpressed. He is an ego maniac that has no time for patients. He doesn't round at the hospital and leaves all his care to the Med I residents. He will not control pain issues. So, I told my father we would go for the diagnoses and then depart for another doctor. In just under 4 minutes he told us there was nothing he could do and pushed the clinical trial study of Revlimid. I personally wonder about the "wonder drug". If you go to the website you'll see that one of the many side effects is a severe drop in WBC. Dad is already there. 2.3! How much lower do they want to take him? Dad's thinking he doesn't want to be a lab rat. I'm currently looking for another doctor in central or western Kansas not associated with the Cancer Center of Kansas. I've spent too many years in the medical field - I've seen the results of the bone marrow - I know where myelofibrous progresses and I am well familiar with the WHO classifications, not to know where he approximately is. I was APALLED at the callousness of the oncology team, let alone the lack of information given to him. But over the years I've watched big corporations destroy the health care system in america and I know it's about the all mighty dollar these days. A patient is foolish not to do some research themselves before being "milked" by some of these "used-car salesman". I am looking outside my area for an oncologist or a really good primary care with compassion and a heart and the willingness to refer out as needed for surgery and etc. Anybody know anyone? I've tried the internet, people at work, doctors, nurses - unfortunatley we tend to know around our area for about 150 miles but no further. Any help would be appreciated, and keep your chins up ! Remember medicine is a PRACTICE, and some people do that BADLY. Doctors are NOT all knowing - they too were "c" and "d" students. Any help I can give with your research or questions I'll try honestly to help you find an answer. My fathers spleen is so enlarged it has taken over half of the abdomen cavity. Surgery was not even suggested. He is finding it difficult to eat with the pressure from the spleen. As a solution, instead of ensure (YUCK), We have started juicing. He seems to have more energy with 5 carrots mixed with an apple - it's really not bad, acutally sweet. For now, we take it a day at a time. This is one of the hardest things I've ever had to do and I will fight the best fight I know to make him comfortable and pain free before he too has to "turn out the lights and go home." Radiationruth Sat, 28 Jan 2006 00:00:00 GMT  On 1/28/2006 Radiationruth wrote:HELP! My father who is 70 was just "diagnosed" with ideopathic myelo just last week. I have worked in health care for 16 years and while we waited on the bone marrow reports to come back, I spent more time in the medical library at my hospital than most of the residents did. I think I have tried to absorb every aspect of this diease and it's progression. Unfortunately, my father lives 4 hours away from me and was referred to a hematologist/oncologist in my home town. When I learned whom it was, I was, to say the least, very unimpressed. He is an ego maniac that has no time for patients. He doesn't round at the hospital and leaves all his care to the Med I residents. He will not control pain issues. So, I told my father we would go for the diagnoses and then depart for another doctor. In just under 4 minutes he told us there was nothing he could do and pushed the clinical trial study of Revlimid. I personally wonder about the "wonder drug". If you go to the website you'll see that one of the many side effects is a severe drop in WBC. Dad is already there. 2.3! How much lower do they want to take him? Dad's thinking he doesn't want to be a lab rat. I'm currently looking for another doctor in central or western Kansas not associated with the Cancer Center of Kansas. I've spent too many years in the medical field - I've seen the results of the bone marrow - I know where myelofibrous progresses and I am well familiar with the WHO classifications, not to know where he approximately is. I was APALLED at the callousness of the oncology team, let alone the lack of information given to him. But over the years I've watched big corporations destroy the health care system in america and I know it's about the all mighty dollar these days. A patient is foolish not to do some research themselves before being "milked" by some of these "used-car salesman". I am looking outside my area for an oncologist or a really good primary care with compassion and a heart and the willingness to refer out as needed for surgery and etc. Anybody know anyone? I've tried the internet, people at work, doctors, nurses - unfortunatley we tend to know around our area for about 150 miles but no further. Any help would be appreciated, and keep your chins up ! Remember medicine is a PRACTICE, and some people do that BADLY. Doctors are NOT all knowing - they too were "c" and "d" students. Any help I can give with your research or questions I'll try honestly to help you find an answer. My fathers spleen is so enlarged it has taken over half of the abdomen cavity. Surgery was not even suggested. He is finding it difficult to eat with the pressure from the spleen. As a solution, instead of ensure (YUCK), We have started juicing. He seems to have more energy with 5 carrots mixed with an apple - it's really not bad, acutally sweet. For now, we take it a day at a time. This is one of the hardest things I've ever had to do and I will fight the best fight I know to make him comfortable and pain free before he too has to "turn out the lights and go home."Dear Radiationruth,The date of you message is over 2 years old and I don't see any response to your questions, I'm sorry about that and I wish I could give you information now but this is new to me so if your able to respond I would very much like to know what has happened in the past 2 years with your father.My sister's wife was diagnosed a few months ago and it appears she too encountered the total lack of human compassion which in many cases is critical to the management of a difficult desease.  They are currently in therapy which doesn't seem to be helping, but their lack of hope which stems from the cold and cruel lack of compassion of their Dr's and specialist is unexcuseable.with hope I remain,Lee   hopeHunter Sat, 15 Mar 2008 00:00:00 GMT