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.
Written by
PAgrandmom
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You say you were diagnosed with NHL, what type was it? CLL/SLL is a subtype of NHL, but there are a number of others.
Very recent research from a few months ago has linked Imbruvica (ibrutinib) to HepB reactivation.. so you should discuss this with your lymphoma doctor...
I am in a similar place.. however...I feel uncomfortable discussing it in an open post... if you go to your original post and hit the MORE V menu you can edit your post and lock it to be viewed by this community only... down on the botton left.. then repost it... by 'Edit response'
Chris - you are absolutely correct about the re-occurrence of Hep B which I had in 1982. The first oncologist was very careful watching for any signs of the Hep B. I took Entecavir with each of the first three chemo drugs. Then I changed oncologists and went on Imbruvica and that oncologist said the I did not need the Entecavir. Unfortunately with health situations no on ever steps up and admits that maybe I should have stayed on the Entecavir. For now I am off of the Imbruvica while the focus is on getting my liver enzymes back where they should be. This is the second break that I have taken from Imbruvica. The first break was about three months. My blood numbers stayed good but the "harbinger" node in front of my right ear eventually became painful and I went back on the Imbruvica.
In my visit today with my PCP he agreed that for now my liver is the central focus and the NHL is secondary. I weight 160# and I question pumping my system up with heavy-duty medications all at the same time. With the Tenofovir for the Hep B hopefully bringing my blood numbers in line, it is nice to not have to deal with the intestine ripping diarrhea for now. I will say that I get a blood test every week and I hang my hat on the numbers. I am aggressive about getting results online - some people are willing to wait until a doctor gets around to calling you. It does not take a rocket science degree to see this week's results is 424 and the normal range is 0-32. I annoy some doctors but I want to know the results just as soon as I can get them.
Pondering a public versus a private conversation, I feel that my experience will reach a larger audience by staying public. With more than 300 million people in the US I doubt that anyone has an interest in my opinion. I pray a lot about a lot of things. When I write I put things out in the endeavor that if someone needs me they will find me. This is a very lonely journey at this time in my life. I am very careful to not load up my troubles on my children nor my friends and family. With a little lipstick and earrings I can fool anyone into thinking that I am all right. And some days I am really sick and wondering if I am going to live until my birthday in March. In the oncology office the receptionist says" "How are you?" And I chide her that I am in an office with 20 people in the dying line. I tell her: "It's nice to see you again." Don't ask my how I am because I actually might tell you. Take care. The trick is to stay on your feet each. JS in Pa.
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