po18guy's Journey with Angioimmunoblastic T-Cell Lymphoma

Patient: Non-Hodgkin Lymphoma (NHL) > T-Cell Lymphoma > Peripheral T-Cell Lymphoma > Angioimmunoblastic T-Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 9 years ago, Male, Age: 65

  1. 1
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Other

    Oh No

    In late April or early May, 2008, I found a swollen node behind my left ear. I have a family Hx of cancer, and was actually expecting it to arrive at some point. My doctor of 25 years had retired the month before :-( I went to his far less-experienced replacement, who thought it was a virus and had blood tests done before prescribing common meds. Since I now had mononucleosis symptoms (night sweats, spiking fevers, extreme fatigue), I asked if I had mono again, since I had it when I was much younger. Uh.... more tests and waiting. Yes, I had mono. This told me that my immune system had failed, so off I went to my immunologist. He said "we have to worry about lymphoma", but his biopsy schedule was two weeks out. DW searched for and found an independent surgeon.

    0 Comments
  2. 2
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Surgery

    Procedure or Surgery

    I now had nodes visibly bulging in my neck. I had a cervical lymph node biopsy. Surgeon was very personable and wise. He told me to "run for your life" if ever heard the word "wait" from a doctor. He recommended a local oncologist and told me "nothing against the older guys, but they generally do not stay as current as younger doctors". I went to the recommended oncologist only to find that he had just gone on vacation. I had to see his partner, an "older guy" :-(

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  3. 3
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Other

    Procedure or Surgery

    June, 2008. "Older guy" did a bone marrow biopsy. He advised that the pathology report said only "abnormal cells". He thought it was a virus and wanted to "wait". We ran for my life.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Misdiagnosed

    Oh No

    Due to a pathology report only of "abnormal cells" I was misdiagnosed with an unknown virus. No treatment was prescribed, other than waiting.

    0 Comments
  5. 5
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    DW scheduled a second opinion at world-class cancer treatment center. Doctor ordered more sophisticated testing done on biopsy samples. He diagnosed me with a rare sub-type of an aggressive non-Hodgkin's lymphoma: Peripheral T-Cell Lymphoma - Not Otherwise Specified. Stage 4B. 50+ nodes involved both above and below the diaphragm, as well as bone marrow involvement. It is considered incurable. It is inoperable. It cannot be irradiated. It is highly resistant to chemotherapy. Prognosis poor. No medically recommended treatment exists for this rare cancer. At SCCA in Seattle, a chemotherapy post was inserted by 83 year old Dr. Robert Hickman of "Hickman catheter" fame. It went without a hitch. My oncologist decided on four cycles of dose-intensive CHOEP to be followed immediately by four cycles of GVD. It nearly killed me, but it was just as hard on the cancer. Despite a slim chance, I achieved complete response. I lost weight, lost color, lost hair, lost what was left of my health, and lost some nerves in my hands and feet. But, I lived on.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  6. 6
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    Due to the intensity of the chemo, and the types of chemo involved, I had numerous side effects: loss of appetite, low blood counts, mucositis, hair loss, fatigue, weight loss, nausea, diarrhea, constipation, indigestion, hyper-edema of calves, ankles and feet. Finally, my skin was attacked causing it to flake off, dry up and crack. Looking back, it was ugly. Yet, I lived through it.

    0 Comments
  7. 7
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Remission

    Celebration

    There was about a 30% chance that the cancer would respond at all to the chemo. Response encompasses a variety of reactions that range from slowing cancer's growth, to stopping its growth, to reducing the disease, all the way to eliminating signs of disease. Miraculously, all signs of the disease were gone. Time to go home and heal from the chemotherapy.

    2 Comments
  8. 8
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Cancer is back/Recurred

    Oh No

    At my first post-chemo scan, doctor found four nodes that were lighting up the PET results.

    0 Comments
  9. 9
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Surgery

    Procedure or Surgery

    I was scheduled for another node biopsy, to ensure that it was the same malignancy, and to eliminate a different cancer. I could not be fit into the intended surgeon's schedule, so I was squeezed into another surgeon's room. I was not entirely sedated, and felt the incision being made to remove an inguinal node. It was very odd, but I could not move, so I just rode it out. When I woke up, nurse told me that doctor had received a needle stick, so I underwent the usual tests for HIV/HepC. Fortunately for both os us, they were negative. It was the same cancer, which had been expected to relapse. However, a relapse within 6 months of chemo drops the prognosis to "very poor"

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    0 Comments
  10. 10
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Decision Point

    At this point, the cancer had defeated eight different chemotherapy drugs. Due to the toxicity of the intense chemo, my health was not such that I could tolerate much more medication. I was scheduled for "salvage therapy" which is not intended or expected to cure the cancer - only to extend my life for a few months. Exactly at this time, I was presented with two clinical trials of drugs that were targeted at relapsed or refractory T-cell lymphomas. Providential! One seemed to fit my situation much better, making the decision easier.

    0 Comments
  11. 11
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Clinical Trial

    I began a clinical trial of Romidepsin, also known as Istodax, Depsipeptide, FK228. It was supposed to produce numerous potential side effects, such as changed heart rhythm, fatigue, diarrhea, constipation, nausea, vomiting, anorexia, taste change and susceptibility to serious infections.

    0 Comments
  12. 12
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Other

    Procedure or Surgery

    On November, 2009, after being in complete response for several months, doctor scheduled the collection of my blood stem cells for a possible autologous stem cell transplant. A Hickman catheter was implanted (not by Dr. Hickman this time!) and I had to administer daily injections of neupogen to myself to stimulate blood cell growth. The collection went well, taking only two days, and the cells are now in cryogenic storage for potential future use.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  13. 13
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Taste change/loss

    Side Effects

    What I did experience was some nausea, which was controlled by medication. The side effects were also intestinal, so I had some abdominal cramping, diarrhea and constipation. But, the week of treatment, I lost the ability to eat for 2-3 days. I wanted to eat, but nothing was appetizing. When I tried to eat, I would almost gag. It was easier to wait it out. I had thrombocytopenia, but my blood rebounded sufficiently between treatments. Basically, I was becoming accustomed to the experimental medication. I asked doctor what the long-term side effects were. "You'll tell us" he said :-O

    0 Comments
  14. 14
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    over 5 years ago
    po18guy's Avatar

    Remission

    Celebration

    The best news was that the lymphoma was gone at scan time in early 2009. This has repeated itself now each two months now for almost three years. I have long ago stopped all anxiety/nausea medication, and have not had a problem. I accidentally received the medication at twice its intended drip rate on one occasion, with out ill effect. Good to know. At my last appointment with doctor (January 30th, 2012), I was told that my scans are clear and that I have been on Istodax the second longest of any patient in the world. So, I have become the Istodax "poster boy" so to speak. This is good news, since there are no known marrow donors, due to various unique features of my immune system. I had originally been considered for an autologous stem cell transplant, but that is not considered a cure. Essentially, it resets my cancer clock to zero, but it begins running immediately once again. A relapse could occur at any point.

    1 Comment