could this be from the whole brain radiation?

silentblue
silentblue Member Posts: 4
edited March 2014 in Long-Term Effects of Treatment #1
My 58 year old mother was diagnosed in October with limited stage SCLC. She went through chemo and radiation. She then had prophylactic radiation to her brain. She had no tumors there though.

Her last session was in February, and within the last 4 weeks she has completely become a different person. She's hallucinating, moody, cannot walk steady, has severe memory loss, cannot function by herself anymore on a day to day basis. I took her to the ER on Friday, and they finally had her admitted. She had seen her radiation oncologist one week prior, and he didn't have any answers for us, kept saying something about white matter..

She's had 2 MRI's a CT scan, chest x-ray, and they all come back normal. I still keep hearing the doctors bring up the white matter. They were going to do a spinal tap, but they cancelled it. They said why put her through anything invasive? But they have not given us any insight as to what may be causing this. She is just gone. I feel like her quality of life has been ripped out from under her. None of the tests show any tumors. They keep saying they've never seen anything like this, and want us to put her in a locked facility. I'm hesitant to take that leap without finding out what the heck is causing this first? I'm a realist and believe that someday the cancer will come back, but this is so unexpected. I feel like they're just giving up on her and don't know what to do next. Could this be from the radiation?

I work at the hospital she is in, and don't have time to be there every second, so I haven't even really met with all the doctors that have seen her. I want my mother back, and to know she may be like this permanently breaks my heart. She doesn't even realize she is in the hospital, sometimes she says she's in church, other times she thinks she's in a restaurant.

Anybody have any input? Any tests I can bring up to the doctors, maybe demand they do them? I really do want them to do the lumbar puncture, and possibly an EEG? Any input would be appreciated, as I'm at the end of my rope. I'm 32, have a baby and a full time job and I just want to have my mother be able to see her grandaughter and know who she is..

THanks so much,
Jackie

Comments

  • bluerose
    bluerose Member Posts: 1,104
    #2
    So sorry
    I just saw this posting now so hope you are still around to talk about this on behalf of your Mom who failed so fast especially mentally.

    I know that rads and chemo too (some of it) can cross the blood brain barrier but what your Mother has experienced is pretty startling from all I have ever heard. There is alot doctors still don't know about how these harsh cancer treatments affect the entire body and now the research is being more geared to minimizing the area that is treated but of course each person is different, each cancer is different and each treatment is different.

    If I were you I would try and get a meeting with the doctors as a group to discuss your Mother's care before anything abrupt is done with her. Sounds like something other than the treatments is at work here though but I am no doctor or nurse so just haven't heard this kind of severity in after effects but that doesn't say it's not possible. You need more input on her behalf. Start with the lead oncologist first and request that meeting. Someone has to have some idea what is going on and remember, you can get a second opinion in. Are you near any big well known cancer hospitals?

    Let us know how it goes.

    Blessings to you and yours,

    Bluerose
  • gdpawel
    gdpawel Member Posts: 523 Member
    #3
    bluerose said:

    So sorry
    I just saw this posting now so hope you are still around to talk about this on behalf of your Mom who failed so fast especially mentally.

    I know that rads and chemo too (some of it) can cross the blood brain barrier but what your Mother has experienced is pretty startling from all I have ever heard. There is alot doctors still don't know about how these harsh cancer treatments affect the entire body and now the research is being more geared to minimizing the area that is treated but of course each person is different, each cancer is different and each treatment is different.

    If I were you I would try and get a meeting with the doctors as a group to discuss your Mother's care before anything abrupt is done with her. Sounds like something other than the treatments is at work here though but I am no doctor or nurse so just haven't heard this kind of severity in after effects but that doesn't say it's not possible. You need more input on her behalf. Start with the lead oncologist first and request that meeting. Someone has to have some idea what is going on and remember, you can get a second opinion in. Are you near any big well known cancer hospitals?

    Let us know how it goes.

    Blessings to you and yours,

    Bluerose

    Smart-pill alternative to PCI (prophylactic cranial irradiation)
    Just in case someone else comes across this. There actually is other preventative measures that are available for SCLC. It's called a smart-pill alternative.

    The idea that systemic therapies can be as effective as PCI has been looked upon for a number of years now, with agents like Temodar and EGFR inhibitors (like Iressa and Tarceva) against brain metastases.

    EGF is epidermal growth factor. EGF is a receptor on many normal tissues/cells, and also on many cancer cells. It is a growth hormone, locally secreted by cells. It attaches to a receptor on the cell membrane called EGFR (epidermal growth factor receptor).

    It then activates signalling pathways withing the cell (a cascade of biochemical events). One type of enzyme which is involved in the pathway is called tyrosine kinase.

    Targeted treatments like Iressa and Tarceva take advantage of the biologic differences between cancer cells and healthy cells by "targeting" faulty genes or proteins that contribute to the growth and development of cancer.

    The brain is the most common site of metastatic spread of small cell lung cancer. Accumulating evidence suggests that systemic chemotherapy may play an important role. There have been clinical observations of frequent brain metastasis responses with systemic chemotherapy.

    With a brain metastasis indicated or not, small molecule intervention can be beneficial by dissolving through the capillary cell membranes and absorbed into the brain. A small molecule drug may be able to penetrate the blood-brain barrier (BBB). Systemic brain chemotherapy can also treat coexistent systemic disease.

    Clinical data suggests that patients benefit both in terms of response and survival from drugs and drug combinations found to be "sensitive" to cancer cells rather than "resistant" to those cells.

    The leading edge of research today is determing how a patient's tumor cells work and hitting those pathways with multiple drugs, simultaneously or sequentially, each chosen because it targets one of those growth, replication and angiogenesis pathways. Matching tumor type to drug.

    Drugs like Temodar, Iressa and Tarceva are small molecule. Empirically, it has been shown to cross the blood-brain barrier (BBB) to affect cell death in circulating tumor cells. Exciting results have come from studies of multitargeted tyrosine kinase inhibitors, small molecules that act on multiple receptors in the cancerous cells, like Tykerb and Sutent.

    The problem of penetration into the CNS is not as nearly as severe for small-molecule drugs. Large molecules cannot permeate through the narrow spaces, however, fat soluble (lipophilic) molecules can dissolve through the capillary cell membranes and are absorbed into the brain. A few brain diseases consistently respond to lipid-soluble small molecules.

    What may be another alternative is high doses of two small molecule EGFR pathway drugs, Tarceva and Iressa, given together. It might cross the BBB and some patients may get a long-lived remission with these drugs. Iressa and Tarceva are very similar drugs, small molecule inhibitors of tyrosine kinase, a key intermediary in the EGF cascade pathway. They act on multiple receptors in the cancerous cells.

    High-dose tamoxifen could then be given continuously as a potentiator and an anti-angiogenic effect. This suggestion comes from cell function analysis.

    It makes me wonder, if they radiate just the whole brain but not the spinal cord, how does PCI benefit the patient? Any theoretical cancer cells in the spinal cord would eventually infiltrate the brain.

    Source: Cell Function Analysis

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