My husband has been diagnosed with GBM grade 4. It’s unmethylated and I know the standard treatment may not be as favorable as hoped . He remains remarkably strong and healthy with a good positive mindset. He goes to the gym and works out without increasing his intracranial pressure.
The tumor is located in the R temporal lobe and I am observing a slight change in his personality. No one would detect this except for our daughter and myself.
We have our concerns regarding the level of fatigue he will experience once treatment begins next week.
He is very well known in the strength and rehab world which only adds to my stress. He feels this treatment will be fine and that there will be little to no side effects.
Managing his expectation is my biggest issue as his primary carer.
I oscillate between hope , living in the present and dealing with a fearful unknown future . Right now, I am just plain scared about his treatment which starts next week .
Any words of advice would be warmly taken.
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Yeoktsan66
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Like yours my husband was diagnosed with GBM grade 4 but it was March this year. He is a very fit 75 yr old. His consultant recommended 15 fractions of radiotherapy concurrent with temozolomide. He had no side effects but he did follow the strict instructions about taking the anti sickness tablets prior to the Temozolomide and not eating for at least an hour before or after taking them. He was also started initially on Dexamethasone which he has now managed to wean down to just a daily dose of 2mg. He has now finished his second treatment of chemo tablets only. Five days of tablets and then 23 days clear. I realise that everyone’s experiences of treatment is different but this so far is his. We both have a positive attitude most of the time but there have also been a lot of tears.
Thank you so much for your reply Portugal1. My husband has just turned 61. He spoke to the radio oncologist today . He said he would do his best to treat the GBM , but needed my husband to understand this is a very aggressive tumor .
Either way, he will remain positive till the end. I am already seeing signs of the tumor coming back with initial symptoms of excessive yawning and fatigue.
I dread the treatment, but know it must be done to extend his life. At what cost ? I don’t know.
I shall have to wait till next week to find out . In the meantime, I put on a positive attitude and attend to life’s activities.
Sorry I didn’t really answer your symptoms question fully. Whilst my husband was having the radiotherapy he did sleep a lot during the day. We are now 5 months since diagnosis and his fatigue has lessened and we are managing to get on with life as best we can.
Hi About to start my radiotherapy. Thanks for posting.. Giving me a great boost. I'm very positive too and will certainly follow docs advice re sickness pills etc. God Bless. Yes lve had the tears too.
We hope all goes well with your treatment. Whilst my husbands outcome cannot be altered as his tumour is inoperable he is doing well. At his last consultants appointment he was told that the tumour had shrunk slightly so that gave us a boost.
You will know whether this would help or not but I wonder if doing some extra reading may help your husband get an increased view of potential side effects of the tumour not just the treatment? The Brain Tumour Charity has loads of this material on their website which I wish I'd known for my sister as her tumour progressed into GBM.
I was diagnosed with my grade 4 GBM, right temporal lobe in May 2010, so know that a grade 4 GBM can mean 'change of life, not end of life'.
If you read through my previous posts you will hopefully find some useful information, including my alternative 'anti-cancer' treatments, I have been taking since 2010.
Your husbands, positive attitude is the best response you can have and it is important that you both remain positive and believe that you get through this with a positive outcome.
Whilst he is taking chemo, I recommend that he drink a pint of water - I drank ozonated water
throughout my treatment and continue to do so today. Oxygen kills cancer cells, whilst sugar feeds them.
Has he cut out eating all unnecessary sugar, which feeds cancer cells? Blueberries, pecan nuts and turmeric spice have anti-cancer properties and I continue to include them in my diet.
Regarding fatigue, it is part of the treatment and healing process, so he should listen to his body and rest when it tells him to do so. Taking time out to allow his brain and body to recover from surgery and treatment is an important part of the journey.
Whilst he is going through his treatment you should all take some time out to think about having a positive future together and make some plans regarding what he and you all would like to do. Most importantly spend time making new memories and laughing as much as possible.
There will be changes in behaviour and ability to do things, I have always viewed this as an opportunity for change and learning how to do things differently.
I have attached a copy of an improved version of a painting I created for the Brain Tumour Charity's Time Art exhibition last year, which I hope will help you and family.
If you have any questions, please do ask and I will reply.
Wishing you all the very best for a positive outcome and a longer and better life together.
To be honest, I don't know if my GBM was methylated or not.
I've checked my medical records and can't find any info about my TMZ dosage, so the best thing to do is to go with the Oncologist's recommended dosage. I always took my TMZ late evening before going to bed, with a pint of ozonated water, in order to sleep through any possible side effects. Have you thought of using the Brain Tumour Charity's website to see if they have any info on suggested dosages?
Regarding spending more quality time together, we turned our hospital visits during treatment into mini-breaks and would sometimes stay overnight in a hotel in Manchester after picking up the drugs/starting my treatment to have a rest before going back home. Treating ourselves to a nice meal or some retail therapy.
The most important thing you can do together is take each day and step one at a time, whilst always looking to the future and making plans e.g. what would you like to do after the treatment is over? For us, having got married in late 2010, we had our honeymoon in 2011 on the Royal Clipper cruise ship in the Med. Where we spent time together enjoying, life, the port visits and time spent at sea.
You're needs are just as important as your husbands, so when you can, spend some time rest together. We used to do that in our garden during good weather, or just chill out in the lounge, reading, listening to music or doing jigsaws together.
Wishing you both the very best with the treatment, stay positive and laugh as much as possible together with friends, etc.
My husband was diagnosed in May. First round of treatment was ok, a little tiered now and again and maintained his healthy diet and exercise, 2nd round a bit more tiered but it’s because (we think) he needed more calories.
He’s on a Keto diet, and does 15hr fasting. Fasting while taking chemo I have been told helps chemo target tumour more efficiently.
My husband is sitting next to me after just completing a 7k run in the spanish heat. He’s happy and relaxed and feeling well and healthy. He had a 4.5vm L front lobe tumour removed in May, he’s on SATIVEX and Prozac (have had positive results in some patients for slowing growth) and starts Optune TTF in Sept. His tumour is methylated. We live in the moment. We enjoy time with our 2 young kids, we do not look at stats, they don’t reflect how we feel, we know we are on a journey, but we refuse to live it in fear. We are UK based.
Happy to chat through anything, stay strong and positive, have breaks when you need to, don’t stop living, the corner is round, and circles have no end 😊
My husband has been on TTF since Feb 20 this year. He was diagnosed in November last year and had 80 % of his cancer removed, had finished his radiation and TMZ end Feb 2024. And finished 6 cycles of TMZ in August. I know that your husband is on SATIVEX and Prozac and could you please let me know at what dosage. We are Canada based so the treatment is a bit different. His tumour is not methylated.
He’s on 12 sprays a day, but I’m not sure his it responds to unmethylated tumours, as this was one of the reasons they allowed us to get it as they’d seen results in a small group of patients, same for Prozac. I need to check his dosage but think it’s 1 tablet a day.
How is your husband finding optune? Mine stated today. Has your husband had and results since using?
My husband has been using TTF (optune) for about 7 months now and we just got the results from his MRI on Monday 23rd of this month back yesterday. Things are looking good. No progression. All the best to you and your husband.
My brother was diagnosed with the same in March 2021. He has defied every logic to the Glioblastoma condition. Look at all alternatives CBD oil made the biggest difference to my brother when I started to give it to him. Good luck and never loose hope
Hi Birdyellow. My brother takes 3 drops in the evening. It’s difficult to gauge because it depends on CBD strength, but it has worked for him 3 drops. Changed a few times and we think this time we might have actually got the right one. Hope your husband doing well
My husband was diagnosed with GBM grade 4 last October and his also not methylated .
He had the standard of care treatments and he just turned 70. So do not loose hope. Keep fighting. We had very bad days, so so days and good days. Hopefully more good days to come.
My husband is now in Week 5 of 6 in radiotherapy . He is also on TMZ .
To my great surprise , he has been doing brilliantly. His tolerance of the treatment has been wonderful . He takes breaks when he needs it and goes to gym everyday . Cognitive wise , he has shown no deficits and his memory both long and short term remain intact .
I thank God the journey so far has been amazing. I draw my strength and energy from his remarkable courage and each day is a gift and a reminder to treasure life and create beautiful memories .
Thank you to everyone in this group from the bottom of my heart .
My husband has just finished his 6 weeks of radiotherapy and chemotherapy.
He has coped very well with the treatment so far . Just some mild fatigue in the last week. We plan to travel for a seminar he and I are presenting in Dubai .
Does anyone have any knowledge if flying creates brain swelling ? He is on no Dexamethasone or anti epilepsy meds . At this stage , we continue to live and work as much as we can . 🙏🏼
Hi there, my husband I travelled from Ontario Canada to the Turks in June this year after his RT and Chemo but still on his TMZ 2nd cycle. The trip was about 4 hours by plane and my husband did well and it was a blessing to be away from all the doctor's appointments for a little while. So I think it is ok to travel by plane but do talk to your chemo doctor if he is ok with it. And my husband was also on Dexamethasone while we travelled .
Hello. I see you posted this a couple of months ago. I hope your husband is doing well. My husband has now just reached his third year with GBM. He had to stop chemotherapy as it nearly killed him so he's embarked on an alternative path and I believe it is far superior to the standard of care protocol that he was offered. Recently my friend sent me a link to a paper which basically describes everything that he's doing and which has stopped the cancer from growing over the past 17 months. The link is here...
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