jbrw's Journey with Brain and Spinal Cord Tumors in Adults

Family/Friend: Brain and Spinal Cord Tumors in Adults

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Age: 69

  1. 1
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    about 5 years ago
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    Diagnosed

    Oh No

    This person has yet to add any details about this experience.

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  2. 2
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    Surgery to remove as much of tumor as possible, safely. Tumor located on left side of brain, impacting speech, decision making, cognition and right side motor weakness. Diagnosis of stage 4 glioblastoma. Recovery from surgery remarkable -- home 3 days after surgery.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    about 5 years ago
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    External radiation

    Radiation

    6 weeks of radiation, along with chemo (Temodar). Tolerated treatment reasonably well, except for a few very scary days in the first week or so when increased weakness, confusion, memory loss, etc. was present. After that, mostly fatigue. Became more and more difficult to transport patient to radiation site, as persistent right side weakness translated into falls, and episodes that seemed like mini-seizures. These were pretty unpredictable, and therefore patient had to be closely observed at all times. Plus, patient denied any problems with walking, and reacted angrily to people "crowding" him. Made for very stressful times for caretakers, friends and family.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    MRI after 6 weeks of radiation/chemo showed no change in primary tumor. However, smaller nodule on other side of the brain had increased in size a bit. Patient decided to do 2 rounds of chemo (5 days on/ 23 off) for two cycles, to be followed by an MRI afterwards. First round of chemo was horrible....family lives out of town, so caretakers 24/7 and friends observed and related....extreme weakness, fatigue, vomiting, not eating, incontinence.......was very bad for a period of about 10 days total (5 with chemo, 5 after). Medical professionals in case called family to determine if 2nd round of chemo should be undertaken. In the meanwhile, steroid dosage was increased, and patient improved remarkably, including wanting to do things there had been no interest in for months -- watching tv, trying to read, listening to radio and music. Very poor motor skills in accomplishing these things, and needed help to "fix" broken electronic devices (patient just could not get them to work), but increased interest and positive. Is it just the steroids? Medical professionals don't think chemo will work......yet behavior is more positive. Family will be with patient for next round of chemo, one sibling each week. Unknown of what is facing family is extremely stressful. Not sure what to expect, what are decision points, what we should do, and we will not be together.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Second round of oral temodar -- much better experience than first round. Side effects seemed mostly limited to fatigue/restlessness, followed by 2 or 3 days of extreme fatigue, sleeping almost all day. Will now wait for MRI in 3 weeks. All effects of tumor still exist and are getting worse -- speech deficit (he knows what words he's looking for, but can't get them out, so very difficult to understand what he's trying to say), lack of focus, short term memory loss, anxiety, and muscle weakness. He's now needing the wheelchair inside the home more and more, where before he could get around the apartment mostly walking, sometimes with assistance. We will have a new decision point after the MRI in terms of whether or not to do more chemo.....the docs don't seem to think it will be worth it. Very difficult to watch a formerly fiercely independent man who travelled the world reduced to having someone else always there "hovering", and to being mostly confined to his apartment.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    about 5 years ago
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    Decision Point

    MRI after 2 rounds of temodar showed no shrinkage of original tumor, and another new spot on the other side of the brain. Dr's recommended no more treatment, and we all agreed. Starting in-home hospice. At this point, transition is no big change - he had a nurse coming once a week, now he has a different nurse. To us, it is a big relief to have someone to coordinate everything, and a resource to talk with. The hospice people know what they're doing and seeing, and over time I think will be a great comfort to us all. Interestingly, about a week after the MRI, falling decreased significantly. Speech and cognitive skills still slowly declining; more restless, not sleeping as much, eating up everything in sight. As long as he can continue to enjoy going out with friends, and having them visit for short periods of time, we'll take it.

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  7. 7
    • jbrw
    • Experience with Brain and Spinal Cord Tum...
    over 4 years ago
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    Lost loved one

    Loss

    My sweet brother Michael died on May 17, surrounded by people who loved him. He was peaceful and comfortable. This journey began 9 months ago; been through surgery, chemo and radiation, and finally hospice. It has been an emotional roller coaster, and there were many times where I was angry, frustrated, stressed out, and trying not to lose patience with Michael's antics and rebellion against losing his independence and his privacy. Yet, with his occasional comments about what he was facing, he taught me how to deal with his impending death, and how to be with him until then. We spent good time together the last several months, and I will always treasure them. To those who are going through the same journey, I would just say to do the best you can....you can't control the disease, you can't prevent the bad days. Try to provide a warm and supportive surrounding as best you can. Accept help, and ask for help. Be open to mysterious "coincidences". Take care of yourself -- you won't be any good if you're sick, exhausted, drained or out of patience. If it looks like hospice is in the cards, get it as soon as you can -- don't wait until you "need" it. They are wonderful and comforting, and only do what you need when you need it. Getting to know you and your loved one sooner rather than later helps immensely as you go through this time. Daily life gets in the way, but other people can and are willing to help deal with meals, laundry, etc. Only you can concentrate on being with your loved one, and try not to let the details get in the way. As a "doer" with lists of thing to do, this was a most important lesson for me. Thanks to everyone for sharing their journeys here; it has been a source of information and comfort to me.

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