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Blasted Blastic Dendritic Cell Neoplasm!

BarbNTexas Message
20 Nov 2012, 08:20 PM

I just found this site. My family is still reeling from the death of my dad, Bob, less than a week ago. It's almost Thanksgiving 2012. Dad went to his local dermatologist in June and had a small lesion lanced to drain blood on his cheek. When it didn't heal but only got bigger, he was sent on to a local oncologist who biopsied it, then after several weeks finally called it skin lymphoma and started localized radiation - 16 treatments which ended in September. Oct. 4 he celebrated his 85th birthday and even played golf. But he was noticing that he was getting more and more tired, and losing his appetite (by November had lost 15 lbs). A couple of weeks later, more lesions popped up on his chest and back. At first he was told it was a rash in reaction to the radiation (by his dermatologist). But a week later, the oncologist saw him and did another biopsy. This time, the lab results were so baffling, they arranged for Dad to be seen by a dermatologist specializing in T-cell lymphoma at MD Anderson in Houston on Nov. 12th. But on Nov. 2, I became alarmed when Dad said he didn't know if he would make it till then - he was getting to the point where he could barely get off the couch. And he never complains. (We live 3 hours apart, and I have been dealing with surgery and treatment for my own thyroid cancer, stage 4). So I called MDA and begged for an earlier appointment and got it for Nov. 5th! We were elated and hopeful - and glad to be at one of the best research hospitals in the world. We started with their dermatologist, who originally thought it was t-cell lymphoma of the nasal variety because he had lesions inside his mouth. This was very treatable and good news, she said. A biopsy was taken of his palate and also his back, which by now was covered in nickel sized light brown flat spots; he also had blood shot eyes, and what looked like a black eye (as if he'd been in a bar fight). From there, she sent us to their Head and Neck specialist - - who completely disagreed with the earlier diagnosis. This was an ominous sign. The next day we came for a 10am appointment with a lymphoma doctor. But when we arrived, we were told his appointment was changed to 2pm with another doctor within the same dept because he was more experienced with my Dad's type of cancer. At that appointment, the doctor said this cancer didn't fit into a specific box - it had markers in many types of cancers. He knew it was aggressive and fast growing, but said his research team would be working on it through the weekend after pathology was done, and they would come up with the best plan of attack. He said he thought he could gain Dad a few good years, to which Dad happily replied, "Well, that might be enough!" A PET Scan was done that evening and we were sent home, and told to return Monday the 12th. My brother flew in from Florida to stay with Dad over the weekend so I could rest and be with my daughter. We planned to meet at MDA in Houston Monday. But Saturday morn, Dad woke up with chest pains. My brother, a fire chief, got him to the small local hospital, who ambulanced him to a larger hospital 45 minutes away. Shortly after that, they performed open heart surgery on him for a triple bypass. As I was rushing there enroute, I was trying to connect the cardiologist with the MDA specialist, so they would have a better idea of Dad's condition. But to no avail. Dad made it through surgery but his blood pressure continued to drop no matter how many blood products they pushed. That night, they opened him back up to repair internal bleeding. And the next day, another surgery to remove a balloon pump in his groin that was supposed to support his heartbeat but wasn't working. He was not improving. Finally, on Monday, I was able to talk to the MDA doctor. That's when we got the diagnosis of blastic dendritic cell neoplasm that had morphed into leukemia. MDA gave the hospital's oncologist instructions. She told us Dad had maybe two months to live if he made it through this. We had a Do Not Resuccitate order on file, but apparently, no one read the file till Wednesday. We didn't realize that everything they were doing was total life support, because Dad was no longer intubated, was able to talk, drink - and by Tuesday cardiac rehab even got him out of bed and into a recliner. But the stress from that seemed to push him into a tailspin and he began to suffer from achiness all over and a terrible spasm in his back. They couldn't give him enough drugs to alleviate his pain. I rubbed his back, and applied heat and ice - soothed him the best I could. On Wednesday - late afternoon - my brother was talking to the ICU doctor and mentioned the DNR order. The guy basically flipped out and said he has been on full life support the whole time. We urged him to look at the file and confirmed that Dad only wanted compassion care if there is no hope for recovery - - to be freed from pain. That changed everything. At 5pm, all cardiac drugs, antibiotics, and blood products were removed. Dad was put on a constant morphine drip. I held his hand and was relieved when his face relaxed and he was able to sleep with only the one IV and an oxygen mask. At 10:30 that night, Dad's breathing slowed down till he took his last - dying in peace. I have tried to remove emotions out of this, but obviously, this was terribly traumatic for all of us. We are still in shock, really. Although some may think Dad suffered in vain against his wishes, I am thankful that he used that time to tell each of his kids how much he loved us and we told him the same. But if there is any lesson to come of this, it is that the DNR order must not only be on file, you have to keep telling doctors and nurses at each shift that it is in place. It would be nice to be told bluntly exactly what shape the patient is in - - we had no idea Dad was dying... their politically correct way of dealing with us was so vague. We were clueless. If the Titanic is sinking and there is no hope, just say so! Also, it would be so nice in this digital age for medical information to be shared more freely when it is really needed. In my opinion, Dad never would have chosen heart surgery had he known the diagnosis to begin with. I hope this story can help someone else.
shammahbn Message
21 Nov 2012, 11:53 AM

Wow. I'm sorry for your loss. I had a heart attack from lack of blood while I was in the hospital being treated. It's possible your dad didn't even need the open heart surgery or the bypass, just more blood. This type of leukemia/lymphoma is so hard because it can crop up with no blood system symptoms at all. May God give all of you peace.
oldtree Message
21 Nov 2012, 12:36 PM

Dear BarbinTexas, I'm very sorry to hear your news, I found you story very difficult to read, it must have been a heart breaking time for both you and your father. It is very difficult with both diagnosis and treatments as everybody is different and even our responses to diseases and treatments are unique. This is a very agressive and rapid disease, I felt breathless for a few months but it was not until the lymph nodes swelled up that I knew something was wrong and by the time I had my first bone marrow biopsy the bone marrow was 60% gone. I know from reading the literature that everybody has responded differently to treatment and although I was middle aged and very fit before I got sick I have been left with serious side effects to various parts of my body. I am sure you and your dad made the best possible choices at the time and sometimes there is no choice but to follow the advice and guidance given by the experts in this field. It sounds like you respeced your fathers wishes right to the end and that can sometimes be difficult when the medical professionals mostly focus on trying to cure you. You were very brave to tell us this story online and hopefully with time the anguish of your father's disease will lessen in your memory. I also felt it important about my wishes so I was very adamant and vocal about my wishes and still am.