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Thread: Husband's pathology

  1. #1
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    Husband's pathology

    My husband is 31 and was diagnosed with a stage 2 astrocytoma after having a grand mal seizure, then had an MRI and had a brain surgery in 2010, but it grew. Jan 11th he had another seizure and on the 16th had his 2nd craniotomy. The neurosurgeon is fantasic and got most all of it, but we got the pathology report back this morning when he got his stitches taken out and we got news it's now a stage 3 and looking at possible radiation and chemo. We are pretty nervous about this.

  2. #2
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    Your nervousness is understandable, but most people find the chemo + radio much less daunting than they expected.

    Although your husband has a grade 3, and therefore a better prognosis, the treatment is likely to be the same as for a grade 4 glioblastoma, that is six weeks of targetted radiotherapy with temozolomide (Temodar) chemo. He will lose some patches of hair, which is likely to grow back but slowly , and feel tired in the last few weeks of the course and for a few weeks after it finishes. Temodar is pretty benign, as cancer chemos go, most people need to take an anti sickness pill beforehand otherwise they are OK. Blood counts need to be monitored, but at his age they should stay OK. After studying his MRI, several beams will be targeted to converge on the tumour area, so as to give a minimum dose to the healthy brain cells.

    There is some evidence that taking another drug with Temodar makes it more effective. A survivor of a grade 4 has done well with chloroquine, a widely available, cheap drug (an anti-malaria prophylactic) with few if any side effects.

    You might find it useful to give some supplements to the chemo; the one's listed in this thread may do some good, and won't do any harm, but probably best after the treatment. You may also find it useful to download this article by Ben Williams, a very long term GBM survivor.

    Will he be treated by a specialist neuro oncologist? Brain tumours are not like other cancers, and need specialist skills.

    The bad news is that your husband has got a serious brain tumour at a tragically young age. the good news is that the prognosis is, on average, better for younger patients.

    Good luck and we are here to support you.
    Wife died from a GBM, November 2012. The full story in this thread

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    Thank you for your reply. I'm sorry to read about your loss. Although this has been happening I'm still kind of new to all these words, I will have to do more research. Thank you for giving me a little heads up on what to expect, I'm pretty much just going with what happens. Your reply has helped a bit on what I might expect to come. He does have an oncologist we go see in a few days and we will see a radio-oncologist, if I put that right, sometime soon when they call with our apt. I have read that treatments make you sick and tired but you never really know what all to expect. Just getting a reply really helped, thank you

  4. #4
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    Quote Originally Posted by FireWife View Post
    He does have an oncologist
    Firewife,
    What Lboy was trying to guide you towards is that you need a neuro-oncologist, NOT a common, or garden variety oncologist. Regular oncologists will be good for the more common cancers (prostate, breast, ...), but brain tumours are rarer and the brain is a complicated beast. You don't mention where you are in the US, but I'd get him to a major BT center - Duke, MDA, NYU, MSK, DF, etc for guidance. He can continue to receive treatment locally and be monitored for blood counts, etc by your oncologist if that's more convenient.

    He's moved (unfortunately) to the big leagues now with a grade 3. You may want to consider a clinical trial - and those have to be started before radiation or chemo begins to qualify typically. Or, as Lboy suggests, adding other (FDA approved for other indications) drugs such as chloroquine (and/or accutane, celebrex).

    If you let us know where you are we can give more targeted guidance.

    Good luck, but with him being so young the prognosis should be pretty good anyway.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

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    Hello NikosF, thank you for your reply. Yes we are getting a neuro-oncologist. We are from Oklahoma and we do go to a neurosurgeon and oncologist part of the Saint Francis hospital. We are getting a neuro-oncologist referral from them that they work with. He was a Saint Jude kid when he was young with a tumor in his left hand an had to get radiation rods. This is nothing linked to that one, he's just unlucky enough to get it twice. The brain is pretty scary to have something wrong with it. I appreciate you letting me know things to look for. Any help is appreciated cause I don't know really what to do to help but be beside him through it and be there if needed. He's the type that wants to go his regular life and not talk about it.

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    Firewife, I'm glad he'll be seeing a neuro-oncologist. It's most likely that the prescribed treatment will be Temodar and radiation. That's usually begun six to eight weeks after surgery, so you have some time to work with. I'd consider going to MD Anderson in Houston, the leading brain cancer center in your neck of the woods, during that time.

    I'm starting to be impressed with the combination of chloroquine with Temodar; but it's unlikely a neuro-oncologist will prescribe that without your asking.

    Also, if your husband is interested in clinical trials, those generally need to be arranged before treatment begins. The neuro-oncologist you see may suggest some.

    Your husband will probably have an appointment set up for him where he'll see a bunch of doctors all in one day, including the radiation oncologist and the neuro-oncologist. You should go to the appointment with him if he'll let you, and take a notebook as well as a list of questions to ask. (During my sister's illness, we usually packed the examining room for these meetings.)

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    Thank you GBMsibling for your reply. I will have to do more research on the meds you are saying to combine, I'm still new to the med nes and what they are for so I will talk to the oncologist about them. Yes I do go to his apts with him. I have heard a lot of good things about MD Anderson but he wants to stay close to home so I can still work and we come home in between treatments if possible and he can be comfortable at home. Those are just thoughts. But only we pay our bills and as you know it's really expensive for this stuff, insurance only pays so much. We also have 2 young kids and 1 is in school and has braces (which is a monthly visit). I know I'm not the only one with these problems but I do wonder how people do it and stay sane lol. It's really overwhelming for the thoughts about what is going to go on. Although the pathology isn't what we wanted, it could be a lot worse. Thank you for your kind words.
    Last edited by FireWife; 02-03-2014 at 02:38 AM. Reason: Add info

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    We got the paperwork and got MRIs on a disc and are getting a possible second opinion from MDAnderson. We will see what happens.

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    Quote Originally Posted by FireWife View Post
    I have heard a lot of good things about MD Anderson but he wants to stay close to home so I can still work and we come home in between treatments if possible and he can be comfortable at home.
    It would just be a one-time thing, going to MDA to see what they thought would be the best treatment. They'd consult with your husband's cancer center in Oklahoma, which is where he'd receive his actual treatment. The American Cancer Society has a thing where they will pay RT plane fare for a cancer patient and companion once a year to seek medical treatment. However, if that's not possible to manage, as long as he's being seen by a neuro-oncologist, that's a good thing.

    Yes, this is very stressful. Studies show that the most stressful times for brain cancer patients and their families are

    1. the crisis/diagnosis period (which you're in again, since your husband's moved from grade 2 to grade 3)

    2. the initial treatment period (the six weeks of radiation and Temodar)

    3. the MRIs (which will probably be scheduled every two or three months)

    So you're in a very stressful period right now. The new normal will take hold eventually.

  10. #10
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    Thank you, I will check on that paid plane deal. We go in a few days to talk to the oncologist and radiologist. It's been sleeting, snowing, ad freezing rain so we had to reschedule. It's suppose to get bad Friday also so hope we can go. Thank you for the heads up an support. It's easier knowing I can talk to someone instead of guess what will happen and what to expect. Thank you

 

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