Posts by Donna Harris18

It’s been about nine months since my first post, and I’ve finally found the strength to write an update on my father's harrowing medical journey. Forgive me if this feels repetitive; I just need to get the sequence of our struggle out in the open. Here is how it unfolded: Over the last two years, he’s been managing CLL/SLL with chemo and about eight months of Rituxan. By September 2011, he was in full remission—regular hematology checkups, everything looked perfect—until January 2012, when the forgetfulness, confusion, and non-febrile tremors started. His hematologist sent him to neurology. Everything seemed normal until a brain MRI in March showed lesions, suspected to be leukemia infiltration. He was put on Tegretol due to suspected epilepsy because the lesions were in the temporal lobe. After consulting with a neurosurgeon, the hematologists opted for a stereotactic brain biopsy, but the results came back inconclusive. The neurosurgeon suggested waiting a month for a second biopsy since a follow-up MRI showed the lesions had grown slightly, even though he was on Dexamethasone at the time, which they assumed would shrink any leukemia infiltration. A second biopsy was performed in May, and according to an unofficial phone call between the neurologist and the pathologist,
glioblastoma (which is why I first came to this forum). However, the official pathology report arrived two days later stating there were only demyelinating lesions with no sign of tumor cells. We were euphoric; we thought we had dodged a bullet. The neurological workup dragged on until June, resulting in a working diagnosis of ADEM—which is essentially just medical guesswork. In September, the doctor recommended repeating the MRI. As someone with a medical background, I tried to suppress my worst instincts and stay objective, fearing my daughterly bias might make me see shadows where there were none. At that point, Dad didn't have many symptoms beyond the intensifying memory loss.
In September 2012, the MRI was a disaster: the lesions had expanded, there was edema, and the optic nerve had thickened. After a third biopsy , the official diagnosis was Glioblastoma Multiforme, Grade IV. By the way, it's inoperable.

Dad is currently mobile, but his memory is a wreck; he swaps words at random, like calling a spoon a "sticker." His personality has shifted entirely, characterized by sudden anger, stubbornness, and an abnormal appetite. Does anyone have experience with appetite changes linked to this specific diagnosis that aren't caused by medication?

I am drowning in questions. How could a case this specific evade a definitive diagnosis for nine months despite seeing top-tier specialists? It leaves me wondering if there were medical errors worth pursuing legally, though I know my grief is likely just searching for a scapegoat. There are moments I don't even believe the final diagnosis; if they spent nine months guessing blindly, how can we trust this truth?

Sorry for the long vent, but I needed somewhere to offload this nightmare.

Hello, everyone. Please forgive the novel; I honestly don't know how to make this any shorter. After spending over a year just reading through this and similar forums, I’ve finally reached the point where I actually need to type. This concerns my father. In late 2010, following high white blood cell counts and swollen lymph nodes, he was diagnosed with NHL (CLL/SLL). Shock and disbelief were the initial reactions, but I’m not the type to fall apart easily—I don't let demons like that knock me off course. So, after some sniffles and red eyes (we spent quite a bit of time lying to the neighbors that I was just battling a nasty allergy 😉), I rolled up my sleeves, organized my thoughts, and went to war against this thing. My dad completed two protocols of chemotherapy combined with Mabthera (I assume the specific names of the drugs back then aren't relevant now). Aside from a massive appetite, there were no side effects, thank God. His last chemo session was at the end of August 2011, and everything seemed fine during his regular hematologist checkups. Then, in late January 2012, Dad mentions feeling "strange in his head"—specifically, he's having nightmares. By early February, he starts mentioning tremors that wake him up; they are full-body shakes that he is completely conscious of, feeling much like a fever chill. That’s when the neurological workup began. Suspecting epileptic attacks, they started him on Tegretol. A brain MRI was performed in March, and the results led to an emergency hospital admission because of lesions on the brain. Consultations with hematologists and neurosurgeons suggested a high-probability leukemic infiltration of the brain, but the decision was made to perform a stereotactic brain biopsy. The first one was done on April 4, 2012. The PhD findings didn't show anything specific. A second biopsy on the other side of the head was scheduled for seven days later, and we have finally arrived at our current problem: the unofficial diagnosis (meaning a phone call between the neurosurgeon and the pathologist, as the official report isn't written yet) is glioblastoma. 😢The current reaction isn't shock or disbelief; it’s just emptiness—numbness and darkness. Forgive the long post, and please don't ask me to add a million more details currently swirling in my head; this is my first time stepping up to write.