Ibrutinib or Imbruvica, my apologies for the duplicate post

RetiredChief
RetiredChief Member Posts: 7 Member
edited May 21 in Lymphoma (Hodgkin and Non-Hodgkin) #1

In September 2021 my wife started having headaches that progressed to balance issues etc. In October 2021 she had brain surgery to remove 75% of the tumor that was pathologically determined to be primary central nervous system lymphoma, diffuse large b cell lymphoma.

She was emphatic that she was not going to do the HDMTX or stem cell transplant. In January 2022 she underwent 25 targeted radiation therapy sessions then had 8 treatments of Rituximab infusion along with 9 rounds of Temador via a pill. Things were great until April of 2023.

At that time she had a spot develop in her right eye, she called it a black hole that she could not see through. She had been receiving treatment for diabetic retinapothy and thought that this spot was related to that. After many many eyes tests and two surgeries to get a biopsy of her eye it was finally determined in July of 2023 that she had Primary interocular lymphoma of the eye. The were unable to determine if this was a recurrence of the original cancer or a new one.

She started on methotrexate shots in her eye, one a week for 4 weeks, then 1 every other week for 8 weeks then another 8 shots one every 4 weeks. She has 3 of those left to do.

Anyway in April 2023 she had an mri and it showed her brain to be clear, no change from mri in November of 2022. In November 2023 she had another mri with slight changes in the right frontal lobe. In January of 2024 she had yet another mri that showed further changes in the right and some changes in the left frontal lobe. In April 2024 she had another mri that showed more changes in both frontal lobes as well as a lesion in the spelium of the corpus callusom.. We were once again offered HDMTX and she refused. At this time they are suggesting Ibrutinib or imbruvia, same drug different name.

She has no symptoms! No headaches, no balance issues. Her right eye is basically blind but her left eye is still ok.

Fortunately we have good insurance and our cost for the ibrutinib is $3,324 for the rest of 2024. But I have been reading the side affects and am wondering….

IS THE CURE WORSE THAN THE SYMPTOMS AT THIS POINT? I know this was a long story but I felt you needed all the information I can give to help give me some guidance. Has anyone taken ibrutinib? Did it help? Were the side affects terrible?

Thank you so much !

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2

    So sorry to hear this. One consideration is that the cancer is progressing. What does pathology say about this latest manifestation? Is a biopsy even possible? This may sound odd, but have they offered to remove the right eye? As is it, it is a source for lymphoma to spread from.

    As to the Imbruvica, that is next up for me if my current drug fails. Biological. drugs :generally" have fewer and less severe side effects than classic chemotherapy. However, there is no way to determine what side effects she w=might have. There seems little to risk by trying it, as it can always be stopped. Have you been offered a clinical trial?

    So many questions...so few answers.

  • RetiredChief
    RetiredChief Member Posts: 7 Member
    #3

    No one has mentioned doing a biopsy this time around. Her blood work has remained steady for the past two years. I have tracked it on a spreadsheet and there is very little change, nothing alarming sticks out. Which makes sense since this is not a cancer of the blood.

    The part that is driving our indecision is that when this all started in 2021 she went downhill very quickly. But this has been going on for a year now and other than the eye problem which I should state, every test they did on the eye was either negative or inconclusive for lymphoma except for a dna marker MYC88.

    You are spot on with the so many questions and so few answers! Outside of one Radiologist that we met with most of our questions are answered with HDMTX. He offered several treatment plans, gave the side affects of each plan and the prognosis for success of each plan.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #4

    In my case, numerous biopsies were done at the relapses to ensure that we were fighting the same lymphoma. At the end, it was very difficult for the pathologists to determine, but they concluded that the lymphoma had mutated into a different sub-type.

    Is she being seen at a major cancer center? Even a research enter? I hope so, as those are the best facilities for difficult cases. As to prognosis, I paid no attention, as all that matters is how the lymphoma responded to a given treatment.

  • RetiredChief
    RetiredChief Member Posts: 7 Member
    #5

    As a follow up, she decided to start the Imbruvica at 560 MG per day in July. She lasted about 3 weeks before the side affects really hampered her. Loss of energy, confusion and her legs and ankles swelled up terribly so. She stopped the drug for 6 days then restarted at 420 MG per day. This time she made it 4 weeks before the side affects once again got so bad she had to stop the drug. August 31 she had an MRI and it showed the lesions being smaller than they were on her previous MRI back in June.
    October 1 she had a TIA or mini stroke. At that time they did another MRI that showed the lesions had shrunk some more since the August MRI. But her blood pressure is through the roof, she is swollen up and has trouble getting around.

    She stopped the drug for 2 weeks then restarted at 280 MG per day. The Dr. said they did not know if that dose would do anything or not. They did not think the original dose would do anything either so there is that.

    After a month of 280 MG per day, the swelling has returned as well as the loss of energy. There are no cancer symptoms. At this point she in pondering stopping the Imbruvica/Ibrutinib all together since her quality of life has drastically declined since starting on the drug in July. She has an MRI in January, we will see what it shows then go from there.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #6

    Has anyone offered a clinical trial?

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