Struggling with my sons glioblastoma prognosis

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My son Our 23 year old Son, was diagnosed with Stage 4 Glioblastoma last May. Had surgery,  Radiotherapy and chemotherapy which unfortunately didn't work, then put on a clinical immunotherapy trial,  and were told yesterday that the cancer has now spread to his spine. Last hope of another chemotherapy drug, but on 10/20% chance of any effects. Have also now been passed over to palliative/ care. Feel very alone and frightened of what's ahead in the coming weeks.

  • Hi. I’m so sorry to hear that your son is going through this. It’s awful when you feel so helpless too. I do hope that the chemo drug will work for him. I have no words of wisdom but just want you to know that I’m praying and thinking of your family. Sending hugs.

  • Hi  and a very warm welcome to the Macmillan Community but sorry to hear about your son’s diagnosis. 

    A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot……. I have a completely different type of cancer and treatment journey.

    The New to Community is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated……

    Glioblastoma multiforme

    …… support group. This group is a safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.

    As for the practical and emotional challenges of supporting your son and indeed yourself you may benefit from joining and posting in our……

    Carers only 

    Supporting someone with incurable cancer

    ……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I am so very sorry for you and your son. I do hope the new drug works. I know this must be a terribly hard time for your both. I lost my son aged 40 to terminal stomach cancer just over three years ago and am still struggling to bear the unbearable. I think it is the hardest on the mother who is terrified she may have to watch her child die. Hold on to the hope that he may still be OK. My heart goes out to you.

  • Thank you, you thoughts means alot.

  • Thank you, for this helpful information .x

  • I'm so very sorry to hear about your son. You never expect your children to pass away before you. I just want him to have some quality of life for the time he has left.

    It's the future with out him frightens  me how do you move on with your life, as its never going to be the same again.

  • You will already be doing everything you possibly can for him. Later that will be some comfort for you. Of course you will never get over this. Time does, very very slowly soften the blow. Also, later on, when you are able to, try to keep busy at work or volunteering or some project. My thoughts are with you.