Looking for additional treatments for GBM 4 husband

[KatyaBoston]

Dear all - It’s been the hardest journey I’ve been on in my life. My partner and love of my life was diagnosed with GBM4 on November 30, 2023. We live in Boston. He is French so we used to go back and forth between Boston and Paris. We had a good life. We took care of our health, we ate well, we exercised, we treated other people well. And then a bomb fell on us. Didier is doing well. He responded to treatment part 1 and we are now doing standard temozolomide for 6 months but I’m looking for additional treatments approved or not approved. I’m a PhD scientist and am looking at published literature all the time and we are getting 2nd 3rd nth opinions from clinicians but I’m also looking to connect with people who have successful strategies on managing the meds, side effects, diet, supplements etc. Thank you!

[Snettisham]

Hi Katya

So sorry to read your post, my husband was diagnosed with the same in December but wasn’t advised to have surgery so I guess I am interested to compare experiences if that might be helpful? He too is on the standard treatment, recently finished his first round of Temozolomide.

Hope you get the help you’re after and all the very best. Bon chance!

PS We live in the UK

[Tansi75]

Hi KatyaBoton,

I was diagnosed with my grade 4 GBM in May 2010, so know that it is possible to live beyond the standard prognosis. The most important thing you and Didier can do, is to take each day one at a time, one step at a time, remain positive and concentrate on enjoying your lives together for as long as that may be. Have a look at some of the posts I have placed on the site, which you might find useful.

Include blueberries, pecan nuts and turmeric spice in Didier's diet, which have anti-cancer properties and cut out all unnecessary sugar. When I was on TMZ, I took my tablet with a pint of ozonated water, to add extra oxygen into my system. After treatment I stated to add drops of 3% Food Grade Hydrogen Peroxide (multi-purpose) to a half pint of ozonated water as part of my alternative anti-cancer treatment. I continue to use both to this day.

You can find additional support and advice on the Brain Tumour Charities (TBTC) BRIAN APP, which has just been updated, where you can search for any clinical trials that might be suitable, etc.

I live in the UK and since 2010 take Higher Natures Immune Plus tablets to boost my immune system. Maybe there might be similar food supplements in the USA?

I have attached an updated painting I completed last year as part of the TBTC 'Time Arts' exhibition. Hopefully it will give you both an idea regarding my experiences and the advice I have been giving people about dealing with a GBM 4 diagnosis.

If you have any questions, please leave a post and I will reply.

Wishing you both the best for a positive and long life together for as long as that may be.

Don't forget to laugh as much as possible. 🙂

Every Cloud Has a Silver Lining painting.

[Casper438]

I absolutely appreciate how you feel, it's such a shock how quickly this disease takes hold. My dad is stage 4 but had no surgery due to location of tumour. He did have radiotherapy and TMZ then 3 months of TMZ on its own until he grew a further 2 tumours. He was then switched to lomustine which is really toxic and has been much harder on him than the TMZ. Surprisingly it has shrunk all 3 tumours and he has now completed round 4. On DEX 1.5mg daily. He is not eligible for the Sativex ( cannibas oil containing THC and CBD)trial at our local cancer Centre. We have therefore gone to a private clinic with the blessing from both his oncologist and GP. He commenced medical cannibas oil 2 months ago which has helped greatly with the movement in his hand as he had paralysis and spasticity in it due to tumour location. Also its helping him to sleep. We have absolutely no scientific evidence that it helped shrink his tumours but the Radiotherapy and TMZ were ineffective and lomustine by itself it was stable but then adding the oil he had significant shrinkage. May be just coincidence but we are sticking with it. Take care of yourselves

[RDC1234 in reply to Casper438]

Hi there. I’ve just joined the group and reading through the posts. My wife has a GBM and just had 2nd resection and is about to start on another round of chemo. I’m really interested in CBD oil as heard elsewhere it helped someone else with GBM. It’s a mine field though. Are you able to share the CBD oil that you used? Thanks.

[Casper438 in reply to RDC1234]

Hi there. We use the clinic Curaleaf. They have been excellent. They require your GP to send them your medical notes which they request. Then they will let you know if you are eligible. If you are then it's a consultation with a consultant, many who still specialise in the NHS. Then if approved your medicine is sent out in about a week. My dad takes CBD morning and night and THC also at night. His oncologist and GP are both fine with this and it's well tolerated. After first month you require a consultation (we had a pharmacist) also excellent, to make sure no issues on your medicine and dosing is OK. Then it's every 3 months for consultation. These are not in person but on zoom which works great and is very convenient. You book appointments, request prescriptions and pay for them all through your patient curaleaf portal. Prices are also extremely reasonable which stops people trying to source illegal oil that you don't know what contamination it contains or strength of the oil. Works great for us. Our cancer centre in Glasgow is also running a sativex trial so if they feel it could possibly extend life for longer then we are willing to try it privately as he didn't meet trial criteria. Hope this helps. Good luck.

[RDC1234 in reply to Casper438]

Cheers Casper438 really appreciated. All the best for your dad’s journey.