Hi there, my mum was diagnosed with GBM4 last year May 2021. She had surgery chemo and radiotherapy. At her recent appt with her consultant the latest MRI results show a new tumour, small just below the original one. We have been given some info about PCV combination of the chemotherapy drugs procarbazine, lomustine (CCNU) and vincristine as a possible treatment but Mums consultant said the side effects are pretty crappy and also second line chemo isn’t always as effective.
Does anyone have experience with re growth and what treatment options you were given? Consultant is discussing it with his team, surgery might be tricky due to location of the new tumour. Plan at the moment is another MRI in June to see what the new “blob” is doing and for us to read up on PCV and have a think about that.
Thanks.
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My wife is in the same situation and her recurrence is inoperable. Our Oncologist says 2nd line chemo with drugs like Loumistine is about 10% effective in a limited way and side effects are far more unpleasant than temezolomide. We have BUPA and they are funding Avastin for my wife’s 2nd line treatment which gets underway today. The oncologists is expecting up to a year on his prognosis. Unfortunately Avastin is not licensed for use in the NHS. This is the classic ‘rock and a hard place’ time. Hope you find a way forward.
Thanks for the reply. I’ll look into Avastin and wonder if we can pay privately for her to have this? They don’t have private health insurance but have the funds to pay.
I was diagnosed with a grade 4 glioblastoma in May 2010 in my right temporal lobe and had a regrowth in 2014, which was spotted in an MRI scan. At the time the tumour was too small to operate on, so we waited until Feb 2015 when it was large enough to be removed by surgery. After surgery I took part in the phase 1 SATIVEX clinical trial, which was for regrowth's.
Last year The Brain Tumour Charity raised funds for a phase 2 SATIVEX trial due to have started in March this year. There has been a delay in starting the trial, so it might be worthwhile asking your mum's Oncologist if this could be an option for her when it becomes available.
Has she made changes to her diet, such as cutting out unnecessary sugar?
I have been using what I call my alternative anti-cancer treatments since 2010,
i. Drinking ozonated water, which has extra oxygen in it - oxygen kills cancer cells. I use a Sota Water Ozonator to do this, which is available to buy on-line. There are cheaper versions available.
ii. I also add drops of 3% Food Grade Hydrogen Peroxide (FGHP) (multi-purpose) to 1/2 pint of ozonator water three times a day. Google 'The Truth About Food Grade Hydrogen Peroxide)', which is an American document; the one I used to make my decision to use it, after it was recommended by a dear friend.
iii. Use food supplements to boost my immune system - Higher Natures ImmunePlus tablets, which are designed for this and their Complete Omega tablets, which are good for the brain.
iv. Include blueberries, pecan nuts and turmeric spice in my diet due to their anti-cancer properties.
I hope this helps, if you have any questions, please send a reply and I will respond.
More than anything, stay positive and believe that you can all get through this together, with a positive future.
My husband (64)is in the same situation. He was operated on in March last year and was fine til late February this year when he started getting epilepsy attacks and lost movement in his arm and now can't walk so well. . Latest scan shows the tumour has come back, and Dr's say they can operate again though there are more risks. The Sativa trial would be great, but not started in Spain yet-( where we live.) Apparently they won't repeat radiotherapy only chemotherapy I think. One step at a time He has been taking cortisone for some weeks now and that is impacting his moods.
Unfortunately my husband has lost movement in his right leg now, on top of the right arm loss. So no operation but he will get Avastin on the Spain national health. Does anyone have any advice on home care, has to be private as state help takes a long time? Just lifting up from place to place. I can't help as have a bad back, wonder if anyone used these mechanical lifts. I will get a loan of a couple of wheelchairs for the shower and inside the flat. But now he won't be able to get out the flat as we are on the 3rd floor with no lift
My brother’s gbm4 tumor grew back after standard chemo and radiation after surgery. He is now on Avastin infusions which stops blood flow to tumor. when that doesn’t work anymore, that is it for treatment. This disease is so cruel!
Hi, thanks for your reply. So sorry to hear about your brothers diagnosis too. Was he able to access the Avastin through the NHS or privately? Sending you best wishes.
My husband had lomoustine on its own as second line chemo but it didn’t work. He then had etoposide as third line and it has worked so well , he is in remission !! Also very few side effects
So pleased to hear about your husband's remission. How long ago was the tumour diagnosed? Sending lots of positive thoughts for continued success with the treatment.
Hi yesI was diagnosed with gbm4 in 2015 . I had a six week concurrentcourse of temozolomide and radiotherapy and it came back so in 2016I had further surgery and carnistine wafers were inserted in the cavity left behind. In 2020 inoperable tumour progression was diagnosed and I was prescribed lomustine which I found tough but doable but I only managed 3 cycles as my white cells dipped significantly and I found the side effects were not worth losing my quality of life My oncologist agreed good quality rather than longevity of life… I am now a palliative patient with the local hospice at home I have been lucky.
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Husband about to commence chemo/radio.
Dad diagnosed with GBM grade 4
Rachy
