Posted by J. (Virginia, Us) on 11/23/2014
Hi, I write to you concerning my father.
About 3 years ago my father, a 78 year old man with an impeccable history of health until recently, was diagnosed with CLL. At the time he was asymptomatic, the CLL was caught through a more or less regular health profile blood test. He has been working with an oncologist in Nashville, TN. His symptoms did not begin to show until about a year ago and he only this year began chemo. Prior to starting the chemo, his lymph glands had swollen in his neck and groin area to the size of overgrown zucchinis and I am still mystified as to why his oncologist waited so long to begin treatment.
The chemo has been effective in knocking back the swollenness of his glands and his oncologist believes that the CLL is moving towards remission--BUT--my father's lymphedema has become near unbearable for him and the standard medical profession is stumped as to why he is still retaining fluid.
It is important to note that his edema began before he began chemo but has since grown out of control. Initially he was hospitalized and mega dosed on Lasix which made him incontinent and was totally ineffective. Ostensibly his standard medicine doctors have no idea why he is retaining the fluids. He fills up in his abdominal cavity 6-8 liters at a time and 2-4 liters inside of his lungs. His extremities are filled inter-cellular to the point of bursting and literally 'leaking' fluid through his skin. He has had no less than 10-12 abdominal taps and 5-8 lung taps in less that 3 months. He now has a catheter in his abdomen and my 74 year old mom drains him a liter or so at a time a couple of times a week. He has 2 days of chemo a month but is constantly having to go to the hospital to be drained and then fills right back up with 20 lbs of lymph fluid in 2 days. He gets albumen replaced once or twice a month but it isn't helping much to keep his strength up. He can't hardly walk because the edema has made his genitals enormous, his body is enormous with fluid, his legs, his arms, he can't breath, it is hard to talk when he's filled with fluid--in short--he's in hell.
His regular doctors have not recommended anything, not compression, not massage, not herbs--only have said that 'maybe' the edema will get better when the lymphs go all the way back down. He's had several CAT scans and MRI's to look for other cancers in his body, or structural blocks or reasons for why his body is not sending the fluid to his urinary system. He has had his heart and lungs checked for every possible problem. The end result is that they find absolutely NO reason for his edema. No other cancer besides the CLL, no structural abnormalities, no other disease processes, no congestive heart issues, nothing!
Still, my father is filled with fluid to the point of breaking open constantly. In a matter of months his quality of life has gone from perfect to agonizing. He is open, very open to alternative medicine, willing to do anything now and needs help desperately but we can not find a truly knowledgeable, experienced naturopath or homeopath for him to go to. We need help--HE needs help. The CLL isn't killing my father, the lymphedema throughout his body is and so far no one has offered any hope or approach for dealing with this.
I beg you on behalf of my father, who is growing weaker by the day, for help. Please, please help my father and help us find the right person to treat him and hopefully save his life. I thank you for your time.