Glioblastoma Treatment

My husband was not able to have an operation but initially it was planned that they would try three weeks of radiotherapy. A decision was not made on chemo as they were waiting for more results from his biopsy before deciding whether chemo would be any use. Unfortunately, my husband got less mobile very quickly and radiotherapy was then deemed not advisable.  So he has had no treatment since he was diagnosed in early September. He just receives palliative care. He did have a spell of having difficulty with speech and understanding but this slowly disappeared after various drugs - steroids and anti-seizure were administered.He now has very little mobility and sleeps a lot. It is devastating to get this horrible disease but when no treatment is available it is heart breaking.  The prognosis for my husband is not great so we are trying to make his time as comfortable as possible. My heart goes out to you and your family.

Thank you very much for taking the time to respond when you are going through so much. The fear factor of what is to come and knowing I am going to lose my soulmate there are no words to describe. The worst thing is we are struggling to do the things he enjoys due to his symptoms. Life can be so cruel. I am truly sorry for you and your family. Sending love xx

HI Blue Blue

a warm welcome to the online community. So sorry to hear about your husband's diagnosis. Life's too cruel.

My late husband was 50 when he was diagnosed out of the blue in Sept 2020. He too had surgery but was able to have the 6 weeks of oral chemo/radiotherapy afterwards. Once the 6 weeks were complete he refused all other offers of chemo- a decision I had to respect.

You can read more about our story on my profile fi you are interested.

During our three year GBM journey I came to accept that everyone is unique and that these tumours impact people in so many different ways. Some people seem to respond well to chemo; others don't. G was always more interested in quality of life over quantity. He had found the TMZ had made him feel "yucky" during the 6 weeks and didn't want to spend part of the time he had left, however long or short that was to be, feeling crap basically. That's not necessarily a route everyone would opt for. There are no rights or wrongs here, only what you can cope with.

This is a safe and supportive space as you've already seen so please reach out here anytime. There's always someone about to listen who gets it, someone to gold your hand and someone to offer that virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Please remember to take care of your wee self here too. This is a gruelling emotional rollercoaster ride. So please take time to do things that recharge your wee batteries to help you be in the best position to support your husband through this journey. Taking "me time" isn't selfish. It's essential, trust me.

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

love n hugs

Wee Me xx

Hi Blue blue,

Welcome to the group, I'm glad you found us. My wife was also 48 when she was diagnosed last year. She was able to have radiotherapy  as well as TMZ , I'm so sorry to hear your husband isn't well enough to go through with the radiotherapy. 

With regards to whether it's worth it then I think that depends on how he gets on with the TMZ. My wife tolerated it pretty well and I'd say from the many stories we get here that that's fairly average i.e. most people don't get nasty side effects.

The thing about the chemo my wife hated was the need to have regular blood tests. She has tiny veins so they often take a while to get any blood from her. 

My heart goes out to you. Each one of us loses a different part of our loved one to this horrible disease and it's unbearably cruel.

Sending you a virtual hug,

Chris

Thank you Wee Me, I had seen you reply to another person and read your story. You are right in that everyone has to do what is best for them. Life can definitely be cruel and even though you know awful things happen to people it is easy to think it will never happen to you. Taking 'me' time is hard as my husband isn't close to anyone else. He has made it clear he doesn't want me to return to work yet as I think he is truly scared. It is such a worry what is round the corner and if the chemo doesn't work.

Thank you for the virtual hug, much appreciated. Sending love and hugs back to you xx

Thank you for your response Chris and I am truly sorry to hear that your wife was diagnosed too. Do you mind me asking whether she is still with you? 

Virtual hug greatly received and sending one back to you.

She is still with us. Initially they said all they could offer was palliative radiotherapy but one of the neurosurgeons then contacted us to say he'd be willing to try and operate. He was happy with how much he removed and on the follow up MRI there was very little left. 

The radiotherapy and chemo went fairly well and only towards the end of chemo did her blood results start to worsen slightly with some thrombocytopenia.

Before we knew she could have surgery we were told 6 months at most but afterwards the surgeon told us that she might have another two years. In her favour was how much he'd removed, being young and an MGMT methylated tumour so TMZ is more effective.

That was 17 months ago but we take each day as it comes. One of the things that's exhausting especially earlier on is being hyper vigilant all the time. Every little sign of deterioration has you panicking that this could be the tumour spreading. 

She struggles with mobility now and she does get more confused but the steroids help enormously with this. 

Hope that's of some use. I was desperate to hear stories from others when she was first diagnosed but no two stories are ever quite the same.

Chris 

In my case, I did RT and chemo initially but after the RT finished, for the past 5 months, I have just been taking chemo (temozolomide).  I believe this is standard.  There are clinical trials which show some results with chemo alone, in particular if the patient is MGMT methylated.  So while I am not a doctor it does seem like the chemo alone could have benefits.

I can also tell you, I didn't have too many side effects with both chemo and RT.  Some mild nausea but if I took my prescribed nausea medicine it went away.  Everyone's experience is different but that is what happened in my case.

I with you and your husband well.