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Thread: Temozolomide protocol GBM

  1. #1
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    Temozolomide protocol GBM

    Hello

    My mom was diagnosed GBM. sHe had tumor resection at 20october and diagnozed GBM.

    After surgery she felt very well. Right now she is in hospital on radiation+temozolomide treatment. She is 16 radio sesion behanid.


    My question is any one try some diffrent protocol for temozolomide ?
    I read what more effective is 7/7 protocol.

    I'm from eastern europe where typical is Stupp protocol.



    Thank you

  2. #2
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    Hi Potato, welcome. I'm sorry to hear about your mother's GBM.

    The Stupp protocol is standard here in the USA as well.

    I haven't heard about 7/7-- would that be Temodal (temozolomide) every day, every week? Even after radiation is completed?

    I'm not a doctor, but one thing I wonder is this. Temodal reduces the white blood cell count. If Temodal were taken every day, I think the white blood cell count could be very seriously affected.

    Do you have a link to an article about this?

    There is some evidence that combining Temodal with another treatment can help. One of our members had Chloroquine at the same time as Temodal. Chloroquine is an anti-malaria drug.
    Last edited by GBMsibling; 01-11-2017 at 10:58 PM.

  3. #3
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    Hi

    I found something like that:

    http://neuro-oncology.oxfordjournals...t/11/1/69.full

    You can download pdf file.

  4. #4
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    Hi,

    l'd like to ask you about blood parameters especially about thrombocyte.

    That parameter rapidly drop in my Mom. Doctors stop temozolomide, but they continue radio therapy.

    They are observing thrombocyte parametr before next sesion of temozolomide.

    How my Mom can rise it up ? she is going to back home next week

  5. #5
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    Potato,

    The more common phrase used for thrombocytes is blood platelets. Temozolomide does affect them, but they usually recover naturally, if the count is low the next session of temozolomide is delayed until they recover.

    That is why, as GBM Sibling says, the next phase of chemo is only administered 5 days a month after the radiotherapy has finished, to give the blood time to recover as the dose is higher than in concurrent radiotherapy and temozolomide.
    Wife died from a GBM, November 2012. The full story in this thread

  6. #6
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    Mom had transfered blood platets yesterday.
    Friday is the last day of radiotherapy. She is still in good shape.

  7. #7
    Regular User Pcjr09's Avatar
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    For a suggestion on the low platelets my naturopathic doc suggested a mushroom extract pill but it must have the main ingredient turkey tail, helps with immune system an other benifits, maybe after she finishes her first round of treatment she maybe look into that, also melatonin has good benefits on brain tumors as well but you have to take a higher
    Does but a naturopathic doctor can tell you more just a suggestion I'm trying a few things from the list that was given to me, but best of luck to your mother an your family

  8. #8
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    Thank you for advice.
    I have to find Turkey Tail.

    How big dosage of melatonine shoud be taken ? how does it works ?


    Have a good day.

  9. #9
    Regular User Pcjr09's Avatar
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    Good deal on the turkey tail extrac look for one that mostly has the turkey tail extrac in it the "now" brand is a decent one, as for the melatonin I just started it an I was recommended to take between 10-20 mg no more but no less the 10 mg that is what study was done on but I'm at 15 right now, you well have to experiment a little with it.

    That is because when you take the normal does of 2-5mg it just helps you sleep but when you increase it that much it can keep you awake, so try it at 10mg see how she handles it, try it for a few days bump it up to 15, but do it slowly. But if it keeps her awake just take it in the morning.

    As to why it works there is not a whole bunch of reasoning why it dose but here is a few links on it that might give a little info for you, https://www.ncbi.nlm.nih.gov/m/pubmed/27121240/

    https://www.ncbi.nlm.nih.gov/m/pubmed/8570130/

    But if you can talk to a naturopathic doctor, also do not take the turkey tail while on the 5/23 Temodar stop 24hrs before the temodar starts an continue the next morning after the 5 day cycle. But again I strongly suggest getting in touch with a naturopathic doctor there is more than likely one at your hospital they can tell a lot of advice anyways hope this helps best of luck

  10. #10
    Regular User Pcjr09's Avatar
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    Good deal on the turkey tail extrac look for one that mostly has the turkey tail extrac in it the "now" brand is a decent one, as for the melatonin I just started it an I was recommended to take between 10-20 mg no more but no less the 10 mg that is what study was done on but I'm at 15 right now, you well have to experiment a little with it.

    That is because when you take the normal does of 2-5mg it just helps you sleep but when you increase it that much it can keep you awake, so try it at 10mg see how she handles it, try it for a few days bump it up to 15, but do it slowly. But if it keeps her awake just take it in the morning.

    As to why it works there is not a whole bunch of reasoning why it dose but here is a few links on it that might give a little info for you, https://www.ncbi.nlm.nih.gov/m/pubmed/27121240/

    https://www.ncbi.nlm.nih.gov/m/pubmed/8570130/

    But if you can talk to a naturopathic doctor, also do not take the turkey tail while on the 5/23 Temodar stop 24hrs before the temodar starts an continue the next morning after the 5 day cycle. But again I strongly suggest getting in touch with a naturopathic doctor there is more than likely one at your hospital they can tell a lot of advice anyways hope this helps best of luck

 

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