Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

Help and support

Sparkles79
Posted by

Hi. I have recently been diagnosed with a GBM and am due to start my treatment this week (chemo and radiotherapy). Looking to chat with others in the same situation. Thanks xx

Leer1975
Posted by

Hi, I'm sorry to hear that you have GBM, I'm a carer for my father who has it, diagnosed 2 months ago. His is inoperable and he has had a shorter course of chemo and radiotherapy due to other health conditions. Finished 3 weeks ago, neurologist appointment next week. He coped well with the chemo tablets and radiotherapy but has been rough since it stopped. Chest infections, UTIs, you name it he's getting it. I wish you well on your journey and I'm sure there are other people on here who can provide you with first hand experience. Take care x

EYintheUSA
Posted by

Hi Sparkles79, 

My husband has GBM. He had surgery in March 2019, had 6 weeks of Proton Therapy (radiation) and has had 2 of the 12 cycles of chemo his doctor wants him to have.

My advice is:

Initially, everything is scary. You can't imagine that you will ever cope, and you may not like it, but you will actually find your new "normal". 

The chemo and radiation was not as bad as I thought it would be, (easy for me to say) however, everything is EXHAUSTING.  Be prepared to do less, and take lots of naps.

Take any type of help offered. If someone wants to come to your house to clean your toilet, just say, "yes, please"

Overall, people are kind and will want to help but not everyone knows how to talk/care for a person with cancer.  Brace yourself for idiotic comments and well meaning, but useless, advice. 

Leer1975 mentioned her father getting multiple infections.  My husband has been on antibiotics since he was first diagnosed and has so far been infection free.  Every time someone sneezes near him, I want to jump on them,  but that behavior is not really encouraged

I wish you courage and peace and I hope you will find time to enjoy life. 

 

Peace and love 
InvisiblePuzzle
Posted by

Hello Sparkles79, 

I was diagnosed with GBM at the end of August and just finished my second week of treatment with radiation and chemo. I am so sorry you are on this journey as well and I do hope that first days of your treatment went well. I wish you strenght and courage in coping with it. Know that you are not alone and you are welcome to chat anytime you want to.  

Hugs, 

Ana

Sparkles79
Posted by

Thank you Ana.

Im sorry you are also going through the same. How are you feeling? 

I hope you are coping well with your treatment. I am ok but the tiredness has hit today. I’m not very good at resting as I want to get on with it and keep busy but that’s hard isn’t it? 

What treatment are you having? Mine is chemo and radium daily for 6 weeks. I only started last week and the tiredness has hit today.

Thank you for getting in touch. 

Sparkles79
Posted by

Hi EY. Good to hear from you. 

I’m sorry your husband is also going through the same. 

I hope your husband is doing well. Thanks for all your advice. I’ve got lots of people helping with everything so I’m lucky in that way  I couldn’t do it  

My husband has also been the same and has cancelled visitors, even if they haven’t had their flu jabs.  I’m happy with that as the last thing I need is to be getting ill. 

Have you looked into any other treatment? My husband has been looking and we’re hoping to go up to London for a 2nd opinion. I think the hospitals here are on the right track but it’s always worth a second opinion. 

Thank you,

Sparkles. 

InvisiblePuzzle
Posted by

Sparkles,

I had planned 6 weeks of radiotherapy and chemo (temodal) plus 2 weeks of intense radio. I'm now in my third week and honestly things are getting worse each day. Just as you, effects hit me after the first week. I have been dealing with seizures, brain have been swelling so got higher dose of steroids and antibiotics. I also have difficulties with swallowing because of a sore throat and the most painful, muscle cramps all over my body. Fortunately meds manged to make them appear less often as they used to. It is hard to say what is the cause of treatment and cancer itself. Which part of your brain is affected? Did you have a resection? Mine has started in left temporal lobe and they only managed to remove a small part of it by a surgery.

Yes it is hard to accept that you can't go on the same tempo as you were used to. To admit, experiencing losing control over my body functions I find very frustrating. I really wish you will deal with as less side effects as possible during your treatment. Rest and accept help when you need it. It is a disease that gets into the very last cell of a human so I guess is something we will have to adjust on.How are you coping mentally?

I will be thinking of you and sending you all of positive thoughts I have. I am here whenever you feel a need to talk. Hugs, 

Ana