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What to expect next - GBM 4

No. of entries: 4 | Posted on 08 Feb 2014 10:20
  • My husband was diagnosised with an inoperable  GBM 4 tumour in the occitiple lobe a week before Christmas and like many of you our lives have not been the same since. He only went to A&E as he had a few headaches but because of the memory vagueness they gave him a scan which we are glad in a way that they did. Since then he has been on steroids and he is acting completely normal. I have found myself wondering if they have made a mistake but I have seen the tumour in the scans. he is duie to start radiation and chemo treatment in 2-3 weeks time which the doctors have said they are hopeful will shrink it but from all the stories I have been reading from fellow sufferers that seems likely. know the prognosis is not good for GBM 4. As he does appear so well at the moment what can I expect to happen next. am just trying to prepare myself. am trying to be positive and not look ahead to far as my husband is dealing woith it so well and I don't want to drag him down.

  • Hi there gillymc --- sorry to hear about this diagnosis. My own personal view, having gone through this with my husband (although he was able to have surgery)  is to follow your instinct in terms of "being positive" with your husband - if it feels like the right thing for him, then do it! My husband chose to  focus on each part of the treatment and getting through as best he could, not looking too far ahead, enjoying good things as best he could ....even while recovering from surgery and going through chemo. I did all the research, joined the forums etc and sorted out all his appointments, prescriptions, medications etc in the background -- and so we worked well as a team (we still do!).

    What I can also tell you is that a lady much older than my husband had the standard treatment for GBM, at exactly the same time as him, is doing better than he is, ..... and her tumour was inoperable. She seems to have responded really well to the chemo.

    Best of luck with things and I am sure you will find some good help and support on here.

  • hi Tessa b ,my husband was diagnosed 2 years ago last week.hes had the debulk op the radiotherapy and temadol twice.the tumour has started to grow again so he has had two cycles of pcv chemo,the tumour is still growing after the last mri result last week,now we are in limbo,he his still on steroids only 2mg daily.the hospital says they may be able to get him on a clinical trial .he like your husband is very positive  he gets confused somrtimes but is still able to do things for himself.the tumour affected his sight and he finds it very frustrating and gets angry ,no one from the hospital has been in touch since and I don't know where we go from here.hope your husband is doing ok

  • The standard treatment for a grade 4 glioblastoma is six weeks of targetted radiotherapy with temozolomide (Temodal) chemo. Most people find the chemo + radio much less daunting than they expected. He will lose some patches of hair, which is likely to grow back but slowly , and feel tired in the last few weeks of the course and for a few weeks after it finishes. Temodar is pretty benign, as cancer chemos go, most people need to take an anti sickness pill beforehand otherwise they are OK. Blood counts need to be monitored, but for most they stay OK. After studying his MRI, several beams will be targeted to converge on the tumour area, so as to give a minimum dose to the healthy brain cells. After the treatment he will probably be put on a maintenance dose of Temodal 5 days a month for six months or so.

     

    There is some evidence that taking another drug with Temodal makes it more effective. A survivor of a grade 4 has done well with chloroquine, a widely available, cheap drug (an anti-malaria prophylactic) with few if any side effects. He also took accutane and celebrex as part of a drug cocktail. So far he is good condition three years out with no regrowth. One cannot generalise from one case, but evidence seems to be that other drugs do help. You will probably meet resistance from the oncologists, as this is not standard, but worth discussing with them. yes, do go for a clinical trial if possible.

     

    You might find it useful to give some supplements to the chemo; the one's listed ]in this thread  may do some good, and won't do any harm:

    http://www.cancerforums.net/threads/28777-Supplements-for-gbm

    but probably best after the treatment. You may also find it useful to download this articleby Ben Williams, a very long term GBM survivor.

     http://www.virtualtrials.com/williams.cfm

    Will he be treated by a specialist neuro oncology team? Brain tumours are not like other cancers, and need specialist skills.

     

    The median life expectancy with surgery+chemo+temozolomide is 15 months, but that is only a number below which 50% die, and above which 50% live, there is huge variation and it does not say anything about the individual. The lower half of that median expectation is weighted with people who are older and in less good condition . These tumours are wayward and unpredictable, and no-one can say, least of all the doctors. There are long term survivors, so don’t give up hope.

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