My journey Aplastic Anemia & choleangiocarcinoma

[ericmroy]

My name is Eric Roy and I am from Lake Charles, LA. I am a chemical engineer at a local plant. My story begins as my wife noticed my platelet counts dropping about 5 years ago. She is a registered nurse. I went to MD Anderson to get care. My aplastic anemia affected my WBC's which stayed around 2-3.5 and my platelet count 70-85. Because I was asymptomatic, we decided to just wait and watch. I have hypertension and diabetes which I acquired in my 30's. Because I had labs from work, I saw that my trend changed after having developed a case of the shingles. In September of 2016, my platelets took a drop to 60 and I started having symptoms of abdominal pain. My local provider sent me for an ultrasound to check for a gallbladder issue. To my surprise, I was found to have primary liver cancer, choleangiocarcinoma. My CT's showed no other areas affected. God granted me a little grace and actually my WBC went to normal at the time of diagnosis. Because of the 2 diagnosis combined, I was started on a trial of only 1 chemo agent at a third of the dose. I had a few transfusions here and there, until finally we agreed that I would not get chemo unless my platelets were at least 50. I got chemo at 42 and ended up in the hospital with a GI bleed and platelets of 6. At that time, I ran fever for a continuous 24 hrs which was treated with antibiotics which would later give me cdiff. I recovered and when we got rescanned, the cancer had not changed significantly. It was decided that no more chemo would be done in an effort not to kill any more of my platelets and I was not a candidate for radiation as well. Being in a rock and a hard place, we decided to try Keytruda. I received 2 doses with no significant side effects, but in a matter of a few days while I was trying reglan as well to help my food go down and my platelet count dropped to 0 suddenly. I don't know if the reglan reduced to absorption of my pramacta or if the keytruda attacked my platelets. I am currently in the hospital, I had an active bleed and received platelets which did not respond. My RBC's were replaced and responded. I was given IVIG and still am getting iv steroids, but still my platelet count is zero. I am still at a local hospital and trying to see if I can be transferred to receive ATG + cyclosporin at MD Anderson. My weight has gone up 10lbs, I'm stronger, and my liver enzymes have also shown a dramatic change, almost all are normal and my alk phos / LDH has been reduced significantly. If anyone has any info to share I would appreciate it for direction.

[curlygirl]

Hi, Eric! I haven't heard of an association with liver cancer but there is a well known association with autoimmune hepatitis and infectious hepatitis A with Aplastic Anemia. Hopefully this link will take you to the articles on Google Scholar but a quick search will find them.: https://scholar.google.com/scholar?q...7ICC0QgQMIIjAA In many cases the liver suddenly recovers from the hepatitis and then Aplastic Anemia develops over the course of the future weeks. I'm sad to hear in your case that it has been going on for years. I'm glad to hear that your liver appears to be recovering using your treatment but also sad that you're in the hospital with an active bleed. Some people develop antibodies from frequent platelet transfusions when they have Aplastic Anemia - it is called becoming refactory to platelets; they may need to start transfusing HLA matched platelets for you if they can find them. Often they need to be flown in. If you are truly refactory to platelets and your liver is recovering, it may be time to consider a bone marrow transplant using one of the protocols that uses Fludarabine in place of more toxic traditional regimines (as the more toxic regimines injure the liver). Good luck and we hope to hear that you are out of the hospital soon!