Three years ago when I was diagnosed with Non Hodgkin Lymphoma the first doctor went out of his way to protect my liver. In 1982, 35 years ago I had a full blown case of Hepatitis B. I was tested for Hep B antibodies before I went on the first chemo medication. Along with the first three chemo drugs I took Entacavir to be protected from the Hep B coming back. I had the antibodies but I did not have chronic Hep B. At some point I changed to another doctor in the practice. My original doctor took on an assistant that I found to be incompetent and I was not about to pay a $45 co-pay to see her every other visit.
The second doctor said that I no longer needed the Entacavir to protect my liver when I went on Imbruvia. I happily gave in to one less pill to take each day. That was in August 2017. All of my blood test results came to be normal although the horrible fatigue never let up. I will say that the Imbruvica arrested the blood counts but did nothing to give me my energy back. In November of 2017 I had a horrible bout of vertigo (stress related) that put me in the hospital for several days and tripped off an afib event. Next I tried Zydelig which shortly made me very ill - I vomited it back up. This was followed by a week in the hospital with pneumonia, staff, and UTI. I was off of Imbruvia for three months. I have a "harbinger" node in back of my right ear which lets me know when the nodes are swollen. Along with the antibiotic Bactrim I went back on Imbruvica in August 2018. By December I was again feeling horrible and "I" stopped the Imbruvica to let my body clear out the medication. By December 2018 I could hardly get out of bed. That is when the blood count results went horribly wrong, The ALT-SGPT, AST (AGOT), Alja Phoaphatase, and Billirubin numbers were off of the chart. A gastro doctor diagnosed chronic Hep B. Where the h--- did that come from? Why was I taken off of the Entecavir which proteced my liver in August 2017.
So now I am on two outrageously expensive drugs of which both make me excessively tired. They tell me that both of the drugs "might" fix the lymphoma and Hep B but neither will make me feel any better. Right now the quality of my life is down to 15%. I have envisioned making my 78th birthday in March but some days I am not sure that I will get there. In the midst of all of this I am ANGRY. In analyzing my anger I aim my anger at the doctors. The lymphoma and Hep B are just doing what diseases do. But the fact that will all of the education and research my doctors can offer me nothing to improve the quality of my life. I am alive - but the quality of my life is almost minuscule. I do ponder whether pushing on to take the drugs is the best choice for me. I am not depressed nor do I have dementia. But I am able to analyze and evaluate my circumstances. In the beginning the goal was five years of survival. I am at 3 1/2 years so maybe I am right on schedule. Only someone that has walked this path will understand my dilemma.