Saturday, 8 July 2017

help with Dex effects

my husband had a second recurrence at the end of May.  Further surgery is not an option (he had awake craniotomy with Gliolan in February for first recurrence, so we were very disappointed that it came back so quickly).  He has been on 16mg per day of dexamethasone since May 30.  We are trying to make the most of every day but the fatigue is extreme and he has weakness and visible muscle wastage in his arms and legs. Does anyone have any tips please on how to counteract the fatigue? He is 47, first diagnosed August 2015.

Any help much appreciated.

7 comments:

  1. In some cases Avastin can be used to deal with edema and allow a tapering off steroids.

    Is he still well enough for clinical trials? At the SNO conference in 2016 there was a presentation on a clinical trial of durvalumab (PD-L1 antibody) for recurrent GBM. Four of the 30 patients had IDH1 mutations, and 3 of these four with IDH1 mutations were progression-free at 6 months on durvalumab alone. At least two of these patients were also progression-free at 12 months on durvalumab alone. Given these results and knowing your husband's tumor was IDH1 mutant, durvalumab would be worth a shot.

    There is a clinical trial recruiting in France combining durvalumab with hypofractionated stereotactic radiation.

    https://clinicaltrials.gov/ct2/show/NCT02866747

    However, his steroid dose would have to be dramatically decreased to be eligible for this trial, and if using Avastin to help achieve that goal, time between last dose of Avastin and first dose of radiation on trial would have to be at least 28 days.

    There is also a trial in the UK, testing olaparib and TMZ, and this could also be a reasonable option given the latest evidence on increased sensitivity to PARP inhibitors for IDH1 mut glioma. This trial requires no prior treatment with chemotherapy for recurrent disease so I'm not sure if this applies, or whether that includes Avastin.

    https://clinicaltrials.gov/ct2/show/NCT01390571

    As far as dexamethasone dose, have you tried to taper down on the dose? What is his doctor's opinion about this? Is such a high dose necessary?

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  2. Hi Stephen
    thank you so much for your thoughtful reply. I will definitely check out the trial options.

    I asked the oncologist twice about the dex dose and also sought a second opinion. In each case I was told it is necessary due to the size of the oedema.

    Avastin is not available for us in Northern Ireland - it is possible to access it privately (i.e. pay for it) in England so I'll need to look at what is involved and the trade off in terms of travel.
    I'm also attempting to source chloroquine as he is starting on PCV and some of the trial info suggests this can be a good combination.

    thanks again, your advice is as always much appreciated
    Anne Marie

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  3. Anne Marie, (this is Jane, Alices mum replying) you could ask Prof Geoff Pilkington at Portsmouth centre of excellence for brain tumour research for his opinion. he is very approachable. Also are you on Cannabis oil? jane

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  4. If you are not already on it the facebook community, How we're beating brain cancer, is a good source of knowledge for uk treatment both NHS and other.

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    1. Hi Jane, thanks so much for this, much appreciated. We have Sativex now - trying everything we can!

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  5. Hi Anne Marie,
    The quickest way to get chloroquine is from www.doctorfox.co.uk. I think they delivered in 2-3 days. I would guess that only an oncologist would prescribe the Avastin. Have you tried Dublin.

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    1. thanks Jo - two great tips, I hadn't even thought of Dublin...hard to think straight sometimes. I'm so grateful for the help

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