Hi - husband has stage 4 glioblastoma

Hi,

A little bit about why I’m here. My world was torn apart May 2018 when my now husband 37 collapsed (previously healthy except deafness and learning difficulties) no one knew why only that he wouldn’t wake up. Barrage of test later found out he had a water filled sack on his frontal lobe which caused him to collapse caused by a large glioblastoma stage 4 cancerous tumour the size of half his brain. When he came round they decided to operate to get rid of the sack and as much of the tumour they safely could. Surgery went well but they could only get a small amount of tumour or it would risk doing more damage to the brain. He recovered really well from surgery with little side affect to go on to radio- chemotherapy for 6 weeks during the hottest time of year I really felt for him but he fought through it. He is now on a stronger dose of chemotherapy which he takes for 5 days each month. He has done 4 months so far but now his liver function is high so they’re giving him a break till they find out why. He had 2 mri since operation one after the radio-chemotherapy which showed some swelling of the tumour the second was a lot better it showed the tumour had shrunk to half its size.

Its taking one day at a time creating memories the best we can and hoping. It’s hard seeing him like this when he was the one healthy and strong. I cry most nights alone as we have 2 children 6 and 7 years old both have special needs. I just wish I can go to sleep and wake up and it all be a dream.

Sorry for long post thank you for reading.

  • Hi there

    Really sorry to hear about your husband's health situation.

    I can share my own experience so it may give you some information or perspective of what your husband might go through.

    I am 35 years male with a Grade 3 Glioma (tumour) on mj right brain that was diagnosed last October and I went through surgery too in December.

    I was told later that it is a malignant tumour and require further treatments like Radio and Chemo.

    I am currently waiting for my radiotherapy to start beginning of February for 6 weeks.

    I am married and have my wife and 6 year old boy to worry about. So life is so tough of I look in to the future. I was broken to pieces when I first came to know about this but every day makes me stronger and I just carry on.

    I know my life won't be same again but that's the reality and I will accept as I do with every other thing good or bad happens around  me.

    Now I have taken some bold decisions in last few weeks, I have changed to a low carb diet and see a lot of difference in my overall mood and body condition. I sleep better too. I know this is not a fool proof diet or scientifically proven thing as the general medical world claim but given my situation I will try what I feel is logically sound for the disease. 

    Talk to your husband and see what he thinks about it or if you have already tried any of the diet therapies let me know how it went.

    Good luck...Stay positive and give him strength.

    Regards

    K

  • Hi,

    My husband was diagnosed with GBM IV last January. 

    He had surgery and did radiation and 6months oral chemo.

    He is doing well. His tumour progressed from a grade 3 astrocytoma which he was diagnosed with in 2012. After a seizure,  an MRI showed a mass on his right temporal lobe. He had surgery then,  he also developed a sac of fluid ,which required more surgery after the initial one. 

    Last year, Just as he had had 4 good years, I noted some personality changes and shortly after another grand mal seizure. Rushed to hospital again where they say they saw "something " probably nothing to worry about. However experts in Dublin who reviewed the scan felt differently..... they showed us the new area. A small mass just above site where they partually removed the AA3  in 2012. 

    They said it could be regrowth  or something they call necrosis (can happen after previous radiation)

    After surgery,  biopsy showed it was a reccurance of a higher grade - GBM 4. 

    He did more chemo and some radiation (10 sessions , as they needed to be careful because he had so much in 2012)

    He is doing ok! I don't read many threads,  I don't follow support groups,  too scary) 

     All in all , he is a Miracle really. One day at a time is all we  can do 

    I stay home to take care of him.  We have 3 kids.

    We have been falling off the brain tumour cliff for a long time... and the truth is... nobody can catch you.

    You just have to get used to falling. 

    Thoughts and prayers are with you.  Nobody deserves this,  and the implications of this illness are so far reaching. Mentally , emotionally and financially. 

  • Hi there

    Sorry to know about your husband's tumour recurrence. I know it must be so heart breaking to know it has come again . 

    As I said earlier is your husband following or followed any diet in the past and do you have any suggestions on food. I'm suffering from Grade 3 malignant Glioma.

    Also you mentioned a very important point that the recurrence could be due to previous radiation treatment. 

    For this very reason  I'm not convinced to go for Radiotherapy and probably delay it as much as possible and deal with the residual malignant cells through altetnative therapies. Any thoughts on this please?

    Good luck to your family.

    Thanks

    K

  • Hi, I really feel and empathise with you on this terrible

    illness. My Dad was diagnosed in January and withdrew from treatment in July. He didn't want to live his life immobile. He had a op to debulk the tumour which had already started to affect his left leg and he ended up shuffling on a frame. He had many horrid Eddie affects from treatment and still is. He is in a nursing home and totally bed bound. Sadly he is now becoming confused and it's affecting his cognitive side. Just wondered what is next to go as I am scared he will stop knowing who I am. 

  • Hi,

    I'm so sorry to hear that your dad has a grade 1V glioblastoma. My husband had a very aggressive glioblastoma which was totally removed with surgery but as the medical profession will tell you, this is not a solid tumour, it is like a spiders web and is impossible to remove all the tiny threads which is why it is so difficult to treat. He then had 6 weeks combined radiotherapy and chemotherapy and 6 months of chemo alone. Even as he was finishing the 6 months chemo I knew that the tumour was growing again as his speech was becoming more confused. The way in which symptoms progress will depend on where in the brain the tumour is located - your dad won't necessarily lose the ability to recognise you.My heart goes out to you, this is an extremely difficult and aggressive cancer to deal with but some people do go into remission and respond to treatment; never give up hope. With love xx

  • Hi ,So very sad to hear you going though such a sad time ,

    My brother had been diagnosed with glioblastoma stage 5 .He was healthy never drank or smoked ,The most beautiful person you could know .Heartbraking, The thing is  my auntie, cousin and sister all died of brain tumours ,all between the age of 39 and 57 .Is this hereditary! 

    I'm in bits as I loved them all .I love my wonderful brother .I'm not sure if radio - chemotherapy is worth all the sickness and pain he will have to endure. 

  • Welcome to the forum Buskie although I'm very sorry to hear your brother has been diagnosed with glioblastoma.

    Unfortunately there hasn't been any activity on this discussion since 2019, so there is a chance you may not hear back from Honey-lily or the others in this discussion.

    I hope that doesn't turn out to be the case but if no-one replies, we have many more recent discussions you can join in on, and find, through the 'search forum' option in the purple bar above. 

    If you have any questions about your brother's diagnosis, then you're welcome to get in touch with our cancer nurses when they return from their Christmas break on the 29th December. They will be available on 0808 800 4040 between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi everyone, ive just lost my dear mum 3 weeks ago to glioplastoma, it was so hard watching her becoming a total different person

    Mum was diagnosed last september 2021 and was offered no treatment because of other health issuses 

    Her left arm was the first thing to be affected then as the months went on all of her left side became weak, not able to walk, talk,pass water, her eyes..

    when mum passed away she had a big smile on her face, like if to say iam happy now and pain free.

    just please our hard it is or may become your not alone, and always remember that you are all very special and loving people.

     

    Take care x.

  • Hello

    I 'm sending buckets of positive energy for anyone experimenting this terrible illness.

    My husband has been diagnosed with  stage 4Glioblastoma in February 2022. All very unexpected ,no symptoms "just like that" he has lost his speech and got hospitalised while we were on holidays...He had  surgery  90% of the tumour was removed. After going through  radiotherapy combined with Chemo for 6 weeks ,he is now on his 3rd month out of 6 of Chemo only  .My husband tumour is seating on the language part of his brain. I've noticed  lately a study decline in his speech and mental capabilities. He eats wel l, sleeps a lots and go for walks...

    Having 3 months left till the end of his treatment we were expecting an improvement . I would like to know if some of you with the tumour located in the same area of the brain  are experimenting similar  symptoms or  on the contrary a speech improvement .

    Thank you to take the time read our story .