Decision time

[macskint33]

I have had gbm4 for 13 months now. (resection / debulk of 99% in Aug 2021 and then the usual format of care IRO radio, Temozolomide Chemo . Tumour has now returned in 3 places within area debulked. I have to quickly decide whether to go back for another surgery followed by Chemo ( if well enough) OR go chemo then hope that it may work to stabilise growth (not reduce) but unlikely surgery will be an option after this route has started. Radiation not on table as I'm full up from that. I guess this post is to see if anyone has any experience in knowing anyone who did go for a second Op/ chemo after tumour returned? Thanks and solidarity to all Brain Cancer thrivers, sufferers, carers and loved ones out there!❤️ Paul x

[GT33]

Hi,I and a neighbour, have the same thing, but on different sides of the head. I had my first surgery in March 2022 to luckily remove (100% of what they could see), but I have been advised it is more than likely to return, my neighbour is the same but had it removed via surgery 3 years ago. Recently, on the 3rd year after the first initial removement, my neighbour had a return, so straight in for surgery. My neighbour seems back to normal, apart from the new stitches. Personally if you could have surgery, I'd say go for it. But have a conversation with the team looking after you and ask for their opinion, after seeing the x-rays etc. They have seen the scans, they surely must have a opinion of what treatment would give you the best result.

[macskint33 in reply to GT33]

Hello and thanks for the reply GT33 - Yes they have given their objective evidence based on the most recent scan but oncology team and Surgical team will not give an agreed joint opinion as to what the best course of action would be - that falls to me (and the internet : ) They give viewpoints based on their stance and experience but since the outcomes are also based on what Quality of life I might have in the following months then it's quite a fine balance : ) Seems to be pick a shit choice time. But yes i agree if i'm being offered surgery it seems crazy to knock it back. I am meeting surgeon today to talk so will keep the chat updated. Your own situation seems very interesting - how yourself and your neighbour have both got brain cancer. I hope this doesn't worry your other neighbours too much😁 Appreciate your insight here as i've not spoken to / heard about anyone who has had second GBM4 op. Good to hear they are still going and back to normal. Thanks

[GT33 in reply to macskint33]

Hiya,No problem I am happy to discuss.

Hope your treatment/surgery goes well.

Regards

[Tansi75 in reply to macskint33]

I had a second GBM4 removed in Feb 2015, the regrowth was spotted by my MRI scan in Sept 2014 (4 years after the first one was removed), but the tumour was too small to operate on. I agreed with my Oncologist to wait until it had grown large enough for a successful operation.

Do you know why there is no agreed joint opinion between the Oncology and Surgical teams? Is it because the tumour is possibly too small at the moment for a successful operation and outcome?

Since your first surgery, have you made any changes to how you live your life, such as change of diet or life style? For example cutting out unnecessary sugar, especially alcohol, and fast foods, etc.

Have you asked your Oncologist if there are any clinical trials, currently available as a possible alternative route to take?

The Brain Tumour Charity (TBTC) raised funds to run a clinical trial targeted for GBM regrowth (Aristocrat), though there has been a delay in starting the trial due to problems with the production of the SATIVEX drug. I took part in the Phase 1 clinical trial of SATIVEX in 2015/16 and it certainly worked for me.

Do you use TBTC's BRIAN APP? I have placed a previous post about BRIAN on this site. There is a specific section on Clinical Trials on the APP, where you can search for trials that are currently available. I do recommend using TBTC's BRIAN APP and use it on a daily basis.

Most importantly, not matter which choice you make, do not give up hope. Stay positive and believe that you can get through your current situation with a positive outcome. I know that is a 'big ask', put it is key to survival.

I hope this helps, please do reply if you have any questions.

[macskint33 in reply to Tansi75]

Tansi75 thanks for the reply it’s much appreciated. I’ve seen and kept up with your own story which is amazing. Yes I’ve done all the right things in terms of health & fitness over the last year. It’s reassuring (😀) to hear you’ve had a second resection too. The MDT ( multi disciplinary team) cannot give an agreed way forwards so after speaking to surgeon this pm I’ll decide but I do feel fortunate to be offered an op at all! I am in general v positive and happy person so will keep that going. No trials on offer here but I will definitely get back on the Brian app and be more diligent in trying to upkeep / look for any trials : guess last year has been about golden time with family etc 🎳 keep on keeping on! Thanks again Paul

[Tansi75 in reply to macskint33]

Thanks Paul,There can be plenty more golden times with the family yet to come.

I don't know if you've done this, when we used to go for my hospital appointments for treatment, MRI scan, etc. We would turn our trips into Manchester into mini-breaks by staying in a hotel for a few days either, side of the appointment. It helped us to get off the wheel of spending time just travelling to and from appointments. Some times we would go to a 'gig', shopping or for a nice meal afterwards. It was another way of spending quality time together, we would also meet up with friends for meals/drinks on occasions too.

Remember that each and every day is a 'great day to be alive' a wonderful Travis Tritt song, which I have as one of my 2 theme songs. The other is Russel Watson's 'Faith of the Heart' and not just because I am a huge Star Trek fan. After we had the news about my second growth, as I left the room, I immediately thought 'Russel Watson's had 2 brain tumours and he's still alive; if he can do it, so can I'.

Keep the faith and stay positive.

😄

[macskint33]

Replying to myself here 😀 see how this goes … just to update my previous post re: decision time. At this stage I’ve decided to go the chemo route and will start TMZ again next week. I’ve asked about trials but unfortunately there are none that I am currently suitable for here in Glasgow. I would like to trial Sativex but the phase 2 of this hasn’t started yet.. Sativex can also be prescribed for MS but is not currently available as far as I can see in Scotland. I’m going to do a bit more research into alternatives of Sativex and can see there is a private centre in Stirling called sapphire. If anyone has any suggestions please DM me. I intend to take alongside TMZ. Best wishes all Paul

[AdultChild1 in reply to macskint33]

I don’t know if you are able to get to the US but MD Anderson (in Texas) has 4-5 clinical trials for GBM specifically. My mom doesn’t qualify because hers has affected her mobility and communication, but maybe you would? I read about a lot of clinical trials post-op hoping to find anything she could get into. NIH in the US also have clinical trials for different cancers and tumors, they are in Baltimore area in the US as well. Duke University has some with the use of the polio vaccine. Possibly the Cleveland clinic as well, we only talked to them about treatment options. Oh and Moffet, Mayo, and John Hopkins all have treatment and I know a couple have trials as well.

clinicaltrials.gov/ -website to search

[Daybreak2]

Good luck with your next treatment. My husband was diagnosed March 2021, and had successful operation and usual treatment with tumour back a year later. He was offered a second operation but had swelling on brain and lack of leg movement so operation was cancelled. Now he was given Avastin since June. He takes a lot of medication and steroids since March.. Not easy, best thing for you is to keep positive and take each day as it comes.

[Who-said-that]

hello I’ve had two surgeries in 2015 then 2016 and am now considering a third… like you no more radiotherapy and for me no more chemotherapy either . I have an appointment with the neurosurgeon on Wednesday so we shall see

[macskint33 in reply to Who-said-that]

full solidarity to you and I hope Wednesday is positive - I’m always amazed and in awe of anyone that has lived with this at all ! Very best wishes paul x

[Tansi75 in reply to Who-said-that]

I have placed some postings on the Brain Tumour Charity's BRIAN APP discussion board about the alternative anti-cancer treatments and diet I have been using since 2010. I was diagnosed with a grade 4 glio in May 2010 and had a second tumour removed in Feb 2015. I hope the posts might prove useful to you. If you have any questions, just leave a post and I will get back to you.

Good luck with your meeting on Wednesday and not matter what the outcome is, stay positive and believe that it is possible to move forward and live a longer life.