All seems to be going downhill very quickly - what should I expect?

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I posted in here about my daughter - late 20s, two young children - and her grade 4 terminal glioblastoma. The response that I had from the community was beautiful and helpful. Thank you.

But, the update is not good...

After 30 sessions of chemo and radiotherapy we had a short break (even squeezed in a lovely family holiday). Then her birthday arrived, as did a seizure, the first since this thing started back in May. Five days in hospital later, we finally got the scan results which showed that, despite treatment, the tumour had grown. It seems to have made considerable growth.

The chemo follow-up we had discussed was now off the table and my daughter is on lomustine instead - just two tablets. One two weeks ago and one between Christmas and New Year. The potential side effects are terrible and she is finding it hard to maintain the positive outlook she has been able to present (albeit somewhat of a mask).

Now, she has been in bed for four days, tired, in pain, permanently dizzy (so much that she can barely walk, and going downstairs is a huge ordeal), and a permanent throbbing headache. I have just been lying on her bed with her and my heart is breaking - "I don't know what to do", "This is not me", and much desperation. Frustration at what is happening, a concealed fear (could be the brain tumour that is helping to conceal the emotions) that this may be the beginning of an unstoppable descent, and worry that, if she does go into hospital, they may confirm her worse fears and not be able to do anything to help.

I suppose I am seeking your experiences. Does this sound familiar to anyone? My daughter has decided, in her own mind, that this is the last Christmas, the last boys' birthdays she'll be here for, the last Halloween, the last New Year and so much more. Even hearing her saying those things is so so sad.  However, for now, I would like an idea of whether these are, as she has researched, the beginnings of end-of-life symptoms, and things we can do nothing about, or whether they may be recognised as symptoms of the lomustine, which might improve in a short while (for the short / medium term, at least).

I hope that makes sense. Both she and I just want to have a clearer idea what is going on. The cancer is awful. The uncertainty is almost unbearable.

Thank you.

  • Hi TB67, I'm so very sorry to hear about your daughter. I can imagine how painful and heartbreaking it is to see her so unwell and not be able to do anything to make it stop. As a mother myself, the one thing I found really hard was when one of my children needed fixing, I felt I should be the one to do it but I had to step back to let someone else help. However this particular disease seems to have no fix and I am going through this with my husband. You mentally try to prepare for the side effects of the treatment and expect to have something positive at the end of it but then another things happens and we're left not knowing if it's the treatment or the tumour. My husband's grew back before his radio and chemo but they went ahead with it. He has had his break and just done his 5 days of chemo. He is extremely tired and is breathless at times. We have been back in hospital over the weekend as he became unwell and speech was effected. They've done an MRI but we don't have the results. I know he's scared and that the constant tremors are driving him mad. I can feel the cracks starting to appear as I've been emotional the last couple of days. I am working on telling people I'm a little overwhelmed rather than my usual answer if "I'm fine!" 

    I think the way your daughter is talking about things being her last is maybe her way of making sure she says and does everything she needs too. Hoping it will make things a little less painful for you all. To be so young with young children is so unfair and my heart goes out to you all. I'm sorry I can't be more help. Everytime I ask about things, they seem reluctant to commit as they say (which I get) everyone's story is different and the way each person reacts to treatment varies. I know we're not the only ones but it does feel a lonely, heartbreaking journey we're taking. 

    Sending love to you and your family xx

  • Thank you for your empathy and your love. Thank you for sharing those relatable feelings. Overwhelming, heartbroken and confused sum up where I feel I am. There is also a kind of numbness and a feeling of being utterly helpless. 

    Sorry for am that you are going through with your husband. I feel your pain. X

  • Morning TB67, thank you for your reply.  Numb is how I feel too and there's times when I feel this can't be really happening. Other times I feel lost or angry. 

    I'm sorry I have not been much help to your original question regarding what is going on. I just don't know. 

    Take care xx

  • HI.

    Sorry to hear things have changed. A GBM journey is an emotional rollercoaster ride for everyone.

    I rode that emotional rollercoaster for just over three years with G and with the help of this community came to realise that everyone's journey is unique and that these evil tumours impact in so many different ways.

    We've been through our share of "lasts" ( we celebrated 3 or 4 of each occasion and it never got an easier) I get it. I wrote a community blog for this site last year on just that topic.

    With regards to the changes you mention, I can only speak from our experience. Last November the oncologist told us there was fresh tumour growth (4 new tumours). After a lot of debate G declined the offer of chemo deciding again that quality of life was more important to him than quantity. At his next MRI in Feb 2023, the oncologist advised that those 4 tumours had joined forces into one massive one. He said that G potentially had a few days if it invaded the brain stem (the scan suggested it was touching the brain stem) or two/three months at best if it continued to move towards the other half of the brain. At that time they re-introduced a lose dose of steroids. Those 2 tiny white pills a day worked miracles until August this year when G went through a phase of multiple focal seizures per day.

    We were transferred into palliative care on 27 Feb 2023 . I honestly thought then that we only had a very short time left but G kept going. His attitude remained focused on his fitness. He was able to keep running until August and only stopped because a DVT made it impossible. He turned his focus to cycling in the garage instead for hours each day. Throughout this time the local hospice team monitored the steroid levels, increasing them when they seizures went out of control then reducing them again until it became clear that the symptoms related to the tumour and the drugs weren't actually helping much anymore.

    I worried throughout about how would I know when it was time.... a thought none of us want to contemplate but that lurks in the background. As we moved through October I knew in my heart that things were changing. On 21st October he cycled in the garage for 3 hrs, went out for the afternoon with a friend, had a huge ice cream sundae and generally had a great day. Then overnight into 22nd something happened. I'll never know what it was for sure - stroke/seizure- and he was transferred into the local hospice on 23rd  who took fantastic care of all of us until he passed peacefully on 27th October.

    He got 8 months to the day in the palliative care phase. Back in February, his balance had gone, he struggled to walk. His speech was pretty much gone and his understanding was very poor. The introduction of the steroids reversed that for most of  those 8 months.

    Now I'm not medically trained. I can only speak from my own experience of supporting my husband. You haven't mentioned what drugs your daughter is currently on. Throughout those 8 months in particular I reported every wee change/concern to the hospice team and they re-assessed and tweaked the medication. It might be worth a call to your daughter's medical team and explain the changes you're seeing in case it's a simple medication tweak that's needed.

    You mention the end of life signs that you can Google - yes I Googled those too- but for most of those last 8 months, G ticked a lot of the boxes. In all honesty, he had ticked a good number of them for the previous three years. Steer clear of Dr Google- he's a scary dude. Try to focus on the facts you have been told and what you are seeing. 

    It's far from easy and I can only imagine how hard it is watching your child go through this. It tore me apart watching my husband go through it and watching my kids see their dad go through it but you will get through it. 

    Not sure if this is a help or not but know it written from the heart. I get it. I get the fear too. If there's anything I can do to help please ask. This is a safe and supportive community. We're all here for you. You're not alone. 

    For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs

    Wee Me xx

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

  • So so sorry about the loss of your husband wee mee 

    he’s no longer suffering but it’s very hard for those left behind. I understand when people say … and I did too that it would have been better to have died in surgery … however at 6m down the line I’ve had lots of wonderful experiences and seen life in a very different way 

    My thoughts and prayers are with you 

    now look after yourself 

    Heart️‍Heart️‍ 

  • Update from me. My partner was diagnosed at end of August this year Glioblastoma grade 4 inoperable. Was given 12/18 months then had a seizure at home I had to give him cpr. We was then given 2/3 months nothing prepares you for those words. Bought him home /pallitive care hospital bed in living room could only use his right hand. He was still eating and drinking then last Thursday couldn’t swallow or eat closed his eyes and never opened them. He had a syringe driver fitted was heartbreaking he never spoke again. His breathing got really heavy and bubbling in his throat called nurses out who settled him with meds but at 10 past 10 that night he took his last breathe with me and children around his bed just like he wanted. 3 months from diagnosis which is crazy he was only 55. I am heartbroken but I try put one foot in front of the other to get through the day. My children are amazing but no one can fill that void you feel. At least he is not in pain and we told each other everything we needed to hear. Don’t know how I’m gonna get through each day without him I’m broken but I have to go on for my kids and grandchildren sending lots of love and strength to anyone is going through this x

  • My heart goes out to you and your children. This horrible disease is so cruel. At 53 he had so much more livingto do. My husband is in similar position, palliative care, bed downstairs. At least he has lived a full and active life and at 76 he accepts he is fortunate to have done that. It is heartbreaking for my children to watch their dad getting weaker and weaker. We didn’t think he would be here at Christmas but he is holding on.Take care.

    Evajean

  • I did a lot of lomustine, you do not mention the dose, for me it was 5x40mg total 200mg per dose every 6 weeks, weight 86-90kg more or less. I also took TMZ with it, 1st day lomustine followed by 5 days of TMZ (at 400mg/day). There were some side effects, like staying in bed for days with very little getting up, other cycles I would take the capsules and go out for a walk, it varied. The symptoms were nausea, constipation, diarrhoea, loss of appetite, the usual. Here are some entries from my log, it is funny how one forgets these. "terrible nausea diarrhoea for days fatigue not as much as before" "a few seizure like days and buzzing episodes and arm gettign worse at shoulder" "terrible nausea, and a lot of stomach pain during day, took 3 paracetamols" "a lot of nausea and terrible pains in toilet - diarrhoeas" "cannot drink due to nausea" "moderate/bad nausea, kytril + metrodopamine" So it seems reading back the logs, my stomach was the worst hit with all these strong chemos. Maybe ask your oncologist to throw in some temodar right after the lomustine, it is the ceteg trial, you can look it up. That is what I did anyway. Apparently the temodar acts like procarbazine, in the PCV regimen, but better. However I am an oligo and you are a GBM. Not medically trained and this is only my own experience.



  • Thank you so much for that detail and your compassion.

    I have avoided coming on here for three weeks, but it has been beautiful to know that I can come back here and read such thoughtful and helpful responses. I am so very grateful.

  • Thank you so much akist.

    This is really helpful. I have avoided being on here for a couple of weeks, but it is lovely to come back and read your words and experiences.