GBM - my experience so far

Hi All,

I have been secretly following this forum for a while but decided to join up as I feel it is a great support network.

My my mum (aged 49) was diagnosed with GBM in July 2016 after having a seizure whilst out shopping with a friend. She had debulking surgery and all the tumour was removed, followed by radiotherapy and tablet chemo for 6 weeks. She had a follow up scan early 2017 and they found the tumour had regrown. She had more debulking surgery in May and this was supposed to be followed up by PCV chemo, however she really struggled to recover from this and was in hospital from May-August due to excess fluid on her brain, she now has a shunt to drain any excess fluid and this seems to be working well.

Her surgeon was happy he had removed 100% of the tumour after the second bout of surgery and her oncologist was happy to leave the chemo until it was needed as she has had a bit of a tough year. She had a scan at the begining of September just to check there was no regrowth and it had shown another tumour which her surgeon described as a 'film on the surface of her brain'. 

She is just about to have her 2nd infusion of the PCV however it has been put back a week as her blood test results weren't satisfactory.

All in all she is still very well and has been throughout most of this awful time which helps me remain positive. The thing I struggle with the most is that both my mum and dad very much have an 'ignorance is bliss' attitude and don't ask many questions, are reluctant to try any alternative therapies to complement the treatment from the NHS or consider a change in diet and I feel like I fight a losing battle with them. Whilst I wholly appreciate everybody has their own coping mechanisms, I just know that if it was myself or my sister in my mums position our parents would do everything in their power to make sure we tried every resource we possibly could.

There is no real reason for this post it's just nice to get it off my chest and share my experience to date with others.

Beth x

  • FormerMember
    FormerMember

    Thank you Beth

    For taking the time to share your experience. I wish you, and mum well through all this. I am pleased she has done so well so far. Return here at any time to share your further experiences


    Best wishes


    Brian x

  • FormerMember
    FormerMember

    Hi Beth

    Just wanted to say hello, and let you know you're not alone. My mum is 54 and collapsed last month, she has a gliosarcoma. She has had the surgery and starts treatment in a few weeks. 


    I totally understand how you feel. I want to pick my mum up, bring her home and try every single thing under the sun to make her better. She is doing the diet, has cut out all sugar and processed food/meat. She is taking every health supplement, tumeric, wheatgrass etc. She has a huge shake in the morning filled with everything weird and wonderful. 


    Maybe your mum might consider that? If you brought her the things and one of the little actiblends. She could drink that easily everymorning. I can tell you what mum puts in hers, we researched alot before buying everything


    Lots of love

    Jo x

  • Hi Jo,

    Thanks so much for your reply. It is such a shock to the system isn't it.

    Your mum sounds brilliant. My mum went to see a lady at the beginning of the year called Patricia Peat who is a private consultant and has a website called Cancer Options (she was recommended by my friends mum who was diagnosed with a terminal brain tumour at the beginning of 2017 and is now cancer free!). Patricia devised a plan of a few highly recommended supplements including reservatrol, frankinsence and turmeric and listed a number of alternative treatments my mum could also have. My mum was really positive after her meeting but has since not done anything regarding the plan that Patricia devised. I really struggle to get my head around this.

    She does go through fits and starts with having smoothies, it is the supplements she is more reluctant to take because she thinks they will interfere with other tablets. However I don't believe Patricia would recommend something that would be detrimental to the rest of her treatment.

    I am studying a Nutritional Therapy course in my spare time and I really do believe that food and supplements can heal and help prevent horrible illnesses and disease. I sometimes feel like my mum is accepting the disease when I know we can try our hardest to fight it. I often wonder about doing 'meals on wheels' for her but I don't know whether I would be doing that for my benefit and peace of mind that I know at least she is having one meal to benefit her body.

    Sending lots of positivity for when your mum starts her treatment x

  • FormerMember
    FormerMember in reply to Beth206

    Hi Beth

    Wow Patricia sounds amazing! Im really interested in nutrition and how it can help. I think im lucky in that mum is too, and will eat/drink/take whatever is said to help. 


    I can imagine how you feel with wanting to help her to eat the best food. Would she consider the meals being delivered? Anything that helps you feel better is worth it i think. 


    Mum starts her treatment the 2nd of january. She has had her appointments and her mask fitted.  She hasnt asked any questions, about prognosis, times or how much tumour is left (they said they got the majority). She doesnt want to know and to be honest i dont think im strong enough for any more bad news right now. 


    I hope your well. Sending you lots of positive vibes


    Jo xx

  • Hi,

    Can I ask you what Patricia suggested for brain tumours? We are in the same situation at the moment

  • Hi Joseph.

    I think I have a copy of the report Patricia sent on my computer. I'm happy to send you it across if you want to send me your e-mail address.

    Thanks,

    Beth

  • Hi Beth206. I'm new to this forum and have been reading lots of threads regarding GLB stage 4. My Mum (49) was diagnosed 3 months ago and has just finished her radiotherapy and first round of Chemo. She remains in hospital due to the fact that her mobility is very poor after her debulking surgery caused a stroke down her left side. We are hoping she can come home soon & we can spend some much needed time with her. 

    I saw you mentioned about alternative options including supplements & nutrition & I was wondering if you could shed any light on this for me so I can have some things ready for her upon her return home. I can see from the thread that your brave Mum has battled this awful illness for a long time. Whilst this must be such a challenge for her and yourself I must say it gives me hope as to what sort of results she will get from her post treatment MRI in 4 weeks time.

    We as a family are at a stage now where we are fearful of the unknown, how long does she have left? What can we do to help? Does she want to accept the help? It is so hard because she remains in hospital and I feel utterly useless to her right now. 

    Any help and advice you could give would be really appreciated. Thank you xx

  • Hi Rainbow, sorry to hear you are going through this awful experience too. Hopefully you get her back home soon. 

    Unfortunately my mum passed away in 2018 but it wasn't without trying everything, as you said the most important thing is does your mum want to accept the help. It is a minefield out there when your trying to find the best resources. I find Chris Woollams Cancer Active website a really good resource, hyperbaric oxygen therapy is another thing to consider, Keto diet too. We also had a consultation with Dr Kate James & a separate one with Patricia Peat and then the last thing we did was go to the Rutherford Cancer Centre in Wales for a consultation on proton beam & immunotherapy. 

    It's very difficult to know what to do for the best, my mum implicitly trusted the words of her oncologist and wasn't really open to trying any other alternative treatments so we had to respect that really.

    Sending love and hope you manage to find some of the things I have mentioned above useful xx

  • Hi Beth. 

    Thank you for taking the time to reply to my message. I want to say I am so very sorry to hear of your Mum's passing. I feel that with a terminal diagnosis it almost hits us in the face and although we know the end result will dawn on us eventually (and sometimes for us it is all we can think about), I've come to realise that it is the day ahead of you that is all that you can really think about otherwise things get very overwhelming dont they.

    My Mum returned home from hospital on the 11th November. We had some huge adjustments to manage but it was so good to have her home. It only took her a few days to settle back in & we manage her care between family & carer visits 2 times a day.

    We her MRI scan following her radiotherapy and first round of Chemo which showed slight progression in terms of growth (although they did state that rhe radiotherapy will still be working & that the follow up scan in March could give us a better result). It wasn't the news we were praying for. Mum had a round of chemo tablets and will continue to for the next 2 months (5 for 1 week then 3 weeks break). She coped amazingly, apart from a small amount of sickness at first which was managed with anti sickness tablets. 

    We are hopeful that in March the scan will give us some good if not satisfactory news. That's all we can do. 

    Mum cannot walk at all due to the debulking surgery resulting in massive nerve damage down her left side. It sounds silly but out of everything that she has gone through the lack of mobility is the one thing that frustrates her the most. She is so strong and we believe as long as she has fight left in her then she will continue to battle this awful illness.

    I hope you have found peace and comfort at some stage along your journey of grief. I don't know about you but I have been grieving for my Mum or who she was before this, since the day she was diagnosed in August. We get glimpses of her some days, in between the pain & sadness. Those few seconds take us back to a time when we were just us and Stage 4 GLB was just something we would hear on a tv programme and know nothing about. 

    We managed to have a special Christmas & celebrated her 50th birthday earlier in December. Both were bitter sweet. We are thankful for this time but equally anticipating what comes next is almost horrifying to think about. There is no knowing how many 'good days' she has left so we try to be there every day and she enjoys seeing her granddaughters...those 2 girls I have a feeling will be the only thing to get us through once her time comes.

    Take care xx