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Thread: Dad diagnosed with GBM

  1. #11
    Regular User
    Join Date
    Oct 2013
    Quote Originally Posted by [email protected] View Post
    Hello, I just lost my Dad to GBM. I am so sorry you are going through this. What other support do you have? Siblings, Mum, Aunties or Uncles? And what does your partner think he should do? If he makes the final call then less of the guilt will be on your shoulders. It is a really tough call indeed, my Dad battled this for 18 months and it was taxing, but bearable until the last month I'd say. I'm sorry, its a tough question to answer, but I think its one that only you and your partner can answer. There are some great support networks available if you tap into them. I think that watching and waiting was the hardest part of the journey for me. We were all on edge for the entire 18 months, and then at the end it happened in a flash and he was gone. I am in Melbourne, are you? Rachel x

    So an update on the situation; my partner has decided to stick around, he now has until early Jan to give the final decision to his employer but is content with his decision thus far. I'm grateful as it just gives us a little more time to see how things play out with dad. As for dad this last week has been a tad challenging, he's becoming more and more frustrated and easily pissed off. I'm finding he's snapping at people at the drop of a hat and being rude a lot. Also his appetite has diminished more than usual and as much as i try to force him to eat he won't, his tiredness is getting worse, and he hasn't even started radio yet!! We are having some pre chemo bloods today, then head into the cancer centre for both radio/chemo.

    I am in Melbourne also, where was your father treated??

    Thanks to everyone for the reply's, it's nice to see people take the time to care about others.

  2. #12
    Senior User
    Join Date
    Feb 2013
    im glad you dont have to deal with this now. you both have time to think about it . r you the only one taking care of your dad?

  3. #13
    Super Moderator Top User
    Join Date
    Dec 2011
    That's good to hear, that your partner will be with you for a while at least.

    The crankiness is probably the Dex.

  4. #14
    Hello, Dad was treated at the Monash in Clayton with Andrew Danks, Ronnie Frieldich, and Jason Lickliter at Moorabin. He did his radiation at The Alfred. I found with Dad I had to press with questions and ask about trials and treatments, I educated myself constantly so I knew what to be asking, I found that otherwise I would be lost in consultations and did not want to be rushed into decisions etc.

    I am glad your partner has more time to decide what to do - what an awful predicament for you all

    My Dad was very grumpy and would be so rude to people, but it was the tumor and the treatments mostly, and I found that small personality traits prior to GBM now became big ones. So little things that bothered him now really bothered him. There is also the element of depression, which I think is unavoidable with the prognosis associated with GBM.

    The dex is a bastard, it plays havoc with moods, but like I said in previous post, Dad was ok until the last month, he could still get out and about and I could talk to him right until the day before he died. His tumor was on his right frontal lobe, it was removed 100% and then recurred about 12 months later just outside of the area that he'd had radiation on for the first tumor. It was also down deep and diffuse, so at this stage there was little that could be done. Jason Lickliter wanted Dad to do more chemo, but at this stage we all said no more.

    Please let me know if there is anything at all I can help you with - advice, help, information

    Rachel x

  5. #15
    I'm glad to hear your partner has decided to stick it out with you; says a lot about character, and love! Hopefully things go well with your dad's treatment. Best of luck and good thoughts to you all.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  6. #16
    Moderator Top User
    Join Date
    Mar 2012
    Right frontal lobe tumour (as with rach's dad) is often associated with personality changes. That does not often happen with left temporal/parietal, which is associated with speech, writing and mobility difficulties (my wife was a case in point).

    So the crankiness is almost certainly the dex, the devil's drug. Is he on a schedule to taper down the dose? (it cannot be stopped abruptly, otherwise the body's natural steroids do not kick back in). Boswellia is a natural anti-brain inflammatory, without the side effects, but not as powerfully effective as dexamethasone.
    Wife died from a GBM, November 2012. The full story in this thread

  7. #17
    Regular User
    Join Date
    Oct 2013
    Thanks everyone for posts, such a great little community here.

    Dad's into his third week of Radiation, his irritability/crankiness is worse than ever. I think its partly drugs (dex is at 2mg per day now, reduced recently from 4mg), and then his frustration with how difficult its becoming to communicate. They warned us his speech would probably go backwards with the increased cerebral oedema caused by radio, but I guess I got used to him being at a certain level, I forgot how bad it was at the start. Also noticed his exhaustion is getting worse, which we expected around this time, hair loss hasn't occurred yet but from close up it does seem to be thinning a bit. He's not so concerned about it, and said he'll shave his whole head if he feels he doesn't like it. Not a single bout of N+V yet, (fingers crossed) which is great!

    I've been taking him to his appointments 2 days per week, along with sorting out his meds and my sisters/brothers and mum all share the days during the week. Tomorrow we see both the med onc and radio onc, hopefully his bloods are all good and whatnot! I plan on finding out what the next step is tomorrow. From reading online, this forum etc, I've gathered there's a month off chemo to allow recovery, and then chemo on cycles. When would the next MRI be?

    Recently we organised power of attorney, so now I'm slowly going through his financials, figuring out income protection etc. He hasn't got a will and we really need to sort it out but as I mentioned, its hard for him to express things so I'm hoping after this radiotherapy is finished his speech will improve and we can get it done.

    My partner officially has until Jan to give his final decision re:job overseas. At the moment he's at peace with his decision to turn it down but is just waiting until then to see how things play out with dads treatment etc. Do most people ask the doctors for a timeframe of prognosis?? I'm not sure I want to, but theres a part of me that does.

  8. #18
    Hello, sounds like he's having a rough time with the radiation, hopefully it will plateau out a little. The dex is such a horrid thing, you need it but it makes life miserable at times unfortunately. Hopefully when your Dad gets his speech back a little his frustrations will be lessened.

    Its good you are getting affairs in order, very sensible

    There should be at least a 4 week break after radiation - regarding the MRI they will probably do one before he starts the chemo, but I am not 100% certain that everyone is the same. Dad had so many MRI's i have lost track, but I am fairly sure they need to take one prior to starting chemo so they have a benchmark to check that it is working.

    The prognosis question is the tough one, we asked it and never got a straight answer, as there never is one. The standard answer seemed to be 6 - 18months -from everyone we met with and asked. But as you will have read all over and on this site, this varies wildly. Dad had 100% resection of tumor and did great for about 12 months and then it grew back, they couldn't get it all the second time and he died 6 months later.

    Hold on to every bit of hope you can. Even in the darkest hours, there is some hope.

    I am so glad for you that your partner can support you at this time.

    Make use of the great Cancer nurses that work with the specialists - I found them to be so helpful and a little easier and more approachable than the big guys. Also, take notes and questions to the meetings - I felt so rushed in those appointments that we waited for weeks to find out what is next and would come out kicking myself for forgetting to ask questions.

    Read up on everything so you can drive the car - not the other way around if you know what I mean.

  9. #19
    Super Moderator Top User
    Join Date
    Dec 2011
    After the baseline MRI, the MRIs should be every two or three months.

    He doesn't need to talk to express himself about the will... If he's anything like my sister (also left temporal lobe) the words are quite clear inside his head but expressing them orally is the hitch. She told us this and the doctors confirmed it was probably the case. I got pretty used to figuring out what she wanted to say, saying it, and asking her if that was correct. (We never did a will, though.)

    Since irritability isn't really characteristic of left temporal lobe tumors, it's most likely the Dex plus the stresses of the situation. Once the radiation is over there should be a bit of breathing room and things may calm down.

  10. #20
    Regular User
    Join Date
    Oct 2013
    Saw the ONC's last week, they were happy with dad apart from mild headaches relieved with panadine.
    Said they do the 'baseline post treatment MRI' 4-6 weeks after completion of radio so that'll be just after the new year, at least he gets Christmas off, for that I am very thankful.

    He only had 4 sessions last week as one day they were doing software upgrades, even though he had the 3 day weekend, on Sunday he was a mess. Barely spoke a word all day, very slow and weak, i offered analgesia and he declined, checked his temp, was normal.
    Goes into radiotherapy monday morning and tells the nurses his right leg wont work, and he has a very bad headache (i got a bit annoyed as he kept denying this to us but anyway) so they admitted him, did some bloods, and increased his dex back up to 4mg BD. He's been an impatient for 24 hours so far, and thinks he feels worse than yesterday. His balance is very wobbly and isn't allowed to get out of bed on his own as he's at risk of a fall.

    Is is strange to have this happen after 3 days of no radio? weekends are usually his best time!


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