Battling GBM Multiform IV since 2019

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I am so thankful today I stumbled upon this website and forums, as I started to really feel alone in this. 

My ex partner, has now been battling Glioblastoma Multiforme since 2019, or was it 2018.  Time does not matter too much now, for him or for his family, including me. This illness has forever changed him, the pre-diagnostics days we noticed: his personality changed entirely and the headaches were unmanageable; together with other symptoms many of us here would of experienced first hand or as caregivers. 

It does scare me now though is, what happens next? We started with an 12 to 14 hour surgery 5 or 6 years ago, followed by intensive radiation therapy, rehabilitation, then chemo therapy [we gone through now seems to be 24 cycles of Temodal], then tried the final method of Temodal [low daily dose for 2 whole months] - the results were not ideal, that drug is no longer effective.  Now, onto a new drug CCNU Lomustine [first cycle recently] with side effects that break my heart to see him struggle even more than prior to this chemo drug. How many more drugs, how much can anyone tolerate? Does anyone how what happens when it is near the end? How can we tell the signs, as caregivers? How can the scans tell us there's no chance of improving his quality of life and what are the options to make it most comfortable? I appreciate everyone for reading this with me, I am scared. 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that your ex-partner has been dealing with a GBM for such a long time and it's natural for you to be feeling as you do.

    As you know, the online community is divided into different support forums so you might also like to consider joining the dedicated glioblastoma multiforme brain tumour forum as you'll then connect directly with others who are supporting people with this diagnosis.

    To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your ex-partner's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • HI Sparkles123

    Oh what a journey you have both been on! 

    Scared is allowed! But this is a safe and supportive space and you're not alone. We've got you. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed.

    I can only speak from my experience of supporting my late husband through the 3 years of his GBM journey. He declined all further treatment after the initial 6 weeks of chemo(TMZ) and radiotherapy so I have no experience of the side effects of Lomustine. With G, his symptoms were more cognitive than physical right up until Aug 2023 when he suffered a period of multiple focal seizures and low oxygen levels. A few days in the local hospice and an increase in his Keppra and steroids stabilised that issue. He developed a DVT despite still being incredibly physically fit. Over the last couple of months, he became less and less there until we were living with a very broken stranger. His short term memory was pretty much gone entirely, he was bad tempered due to the Dexamethasone, there was no reasoning with him so I had to just let him do his thing and be hovering in the background to pick up the pieces. 

    There are no hard and fast rules about how to know when the end is coming but the hospice doctor said to me if they are noticing changes in the person on a week to week basis you could be talking weeks left, if its day to day then its days left. That said she advised the kids and I to have our last conversations in August as she felt G only had a few days and he didn't pass until 27 October. It truly is an emotional rollercoaster ride.

    Be led by what the medical team are telling you. They are best placed to give you answers based on your ex-partner's situation. Have you reached out to his GP to be introduced to the local community nurses or even the local hospice team? For us, those guys were angels! G's oncologist passed him into palliative care at the end of Feb 2023 which was devastating to hear, especially as he told us G had a few days maybe a couple of weeks at most. He got another 8 months! Having the local team on board lifted a huge weight off my shoulders. All it took was a phone number that i could call 24/7. Just knowing that help was only a phone call away made day to day life a bit easier.

    When the time approaches, most likely you'll be given some "just in case" medication to have in the house. Put it out of reach, don't fret about it  but if and when the time comes you'll be grateful you had it as that's the drugs that the community team will use to keep him comfortable. 

    In the end  for us, "something" happened to G overnight on the Saturday night/ Sunday morning. The DVT had also blown. No idea what had happened but by then it really didn't matter, we knew we were facing the end. The just in case drugs were used to keep him comfortable until he could be admitted to the hospice on the Monday. Once there, the hospice team wrapped their arms around all of us and took great care of us all until G passed peacefully on the Friday. He would have known very little at all about that last week.

    I've been very open and honest here so apologies if its too much to take in. 

    If there's anything that I can support with PM me. Please remember the helpline is there too. 

    For now though I'm sending you a huge virtual hug and lots of strenght

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you for that.  Think 5 plus years alone in this, since the patient himself, has lost grasp of reality post surgery I need to know there are others like me out there. 

  • Wee Me - HUGs and more HUGs to you first of all.  I am shivering with tears in my heart as I read your response to me.  I also got half way through your journey, and your late husband's growth of the 3..4 tumor and I had to take a break to breath. Your journey is so much like mine, like a twin going through very similar hardships, emotions and more (I am very sorry for your loss, he is in a better place and running strong as he wishes, I bet). Will reply more later. 

  • Dear Wee Me, 

    I want to reply to this post in public first, to share with others whom maybe facing similar experiences as you and me.  Please also feel free to PM anytime there's anything you like to chat about in private.

    My ex partner was only about 38 when he had his craniotomy surgery. He is not active like your late husband, and struggled so much post surgery, to become a disabled body (which some of our authorities don't deem disable, that is another frustration. He cannot run, he can barely walk more than 1 or 2 blocks, or blend down or squat.... and cognitivity challenged.

    Goodness, the similarities - the short term memory was gone, post-surgery. Bad temper started when the illness grew and remains as we speak. "No reasoning with him" that is SO TRUE, and your right, just let him do this thing. I am still struggling on this one. Hence, I will feel like I am suffering more than the patient himself at times. 

    Thank you for sharing the last months, from Feb. 2023 to Oct. 2023, that can be consider short as ever, in span of our lives but also long long time when suffering. 

    There is the just in case medications? That is comforting to know, probably not something he wants to know now, but helps comfort me. His last week is the biggest struggle for your family, even now I bet, because we are here, and we remember. All of the good, happy, bad and misery. Hugs. The hospice team are amazing angels to help us with those final steps it sounds like, I think reaching out to them would really give me a better understanding, of what's to come.  We can never be prepared but it's better to have some ideal than none.

    Thank you for your openness with your journey Wee Me. 

  • Hi everyone, life hits hard sometimes.  It's been 8 days since my ex partner taken the first dose of Lomustine and we been running circles.  He was unable to get out of bed on his own - upper body appears paralyzed, he was staring into space while stuck in bed (no mental capability to seek for HELP), he was just unaware of what's happening whilst laying stuck in bed.  He then bounced a day up, strong to get out of bed on his own, but then fallen very deep. He's been hospitalized now and might be there a while, the doctors say. He is continuing to have seizures for the last almost 24 hours now, he is in major confusion, he is unable to move his left side of body at all, he cannot sit up or stand on his own - all of a sudden. Anyone else experienced seizures in brain tumor patients? Will they recover? I can only pray now. 

  • Hello, 

    I also wrote on the glioblastoma forum the story about my father who is going through same problem. By the way thank you  for your response and the story you wrote me,it was devastating and after i’ve read it it has been hard for me to reply and even read more..but really appreciate your help Pray tone2.

    so my father has seizures from beggining of december but he only has it on the left leg so his left leg its fully shaking for 3 to 4 min and thats it. This is now 4 weeks after he finished the radiotherapy and 6 weeks of temozolamide. 
    next week we are going to make the mri and see the doctor. 
    we are from romania so i don’t know how it works here with the hospice..is this a special place or its the normal hospital? Maybe we dont have it. 

    Also my question to  is he is having seizures for the last 24 hours non stop? And full body? Or how is it? 
    did it happened before with the seizures? 

    thank you so much for all the messages i am reading here it really helps to understand better the situation and everything. 
    hugs for allHugging

  • Dear Alex,

    Sorry to hear about your father’s battle and the unexpected complications. My ex partner is only having seizures for 48 hours and it stopped. It was only his left leg shaking during the seizures. We are going to have a second craniotomy today. The goal of the surgery is remove as much as possible the tumor so he can at least be back to shape as 1 month ago best wishes to your father