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.
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13 comments:

  1. Stephen W9 July 2017 at 07:21

    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?

    ReplyDelete
    Replies
    1. Unknown13 August 2018 at 23:45

      Hi Stephen
      I'd be very grateful for your guidance.

      My husband 55 was diagnosed with GBM Sept 2017
      Only symptom lost left peripheral vision and 'pepper smells'
      Neuro-oncologist said it was a very large tumour and Joe had been able to adapt to very well without any major symptoms until now...

      GBM right temporal&frontal&close to right MCA
      Partial debaulking temporal lobe

      Usual chemo/radio 6week treatment
      Usual chemo 6cycle treatment

      Joe had a major stroke close to GBM area, after cycle5 so treatment stopped.
      At stroke unit last 8 weeks.
      Much better and left side paralysis improved.

      Currently on:
      Keppra 500mg x2
      Clopidogrel 75mg alternate days
      DEX 16mg/day 02 Aug
      12mg/day 09 Aug
      **Stroke dr put him on DEX to see if might improve his movement.
      Oncologist said OK to try...
      It hasn't made any noticeable difference.
      They're weaning off DEX by 4mg/week.
      I'd like to reduce faster safely to avoid too much DEX build-up in body.

      Recently, Oncologist said last MRI seems to show new growth according to Prof NeuroRadio however surgeon at meeting is not so sure and suggests MRI shows damage from stroke/treatment?
      Oncologist says he has nothing more to offer so now we are on our own.

      We would be very grateful for your recommendations please.
      We live in LondonUK/Portugal and have family connections to Drs/Pharmacists in Portugal should you recommend anything that might be harder to source.

      I found your website following an article I was reading re Ben Williams.

      We worked so hard to retire in our 50s and now we're ready, we both get hit by cancer... but we're strong and positive and won't give up!
      Tiredness makes it hard for us to do the necessary research needed...

      Please can you give us suggestions of what you would recommend might be the best protocol for my husband to follow?

      Many thanks,
      Jane

      Delete
    2. Unknown13 August 2018 at 23:51

      Hi Stephen,
      Following on from my post sent moments ago about Joe's GBM I forgot to add:
      MGMT unmethylated
      IDH1 no mutation
      ATRX likely retained

      Delete
    3. Stephen W14 August 2018 at 10:49

      Hi Jane, if you send me an email (find my blog email address in the User Information page at the top of the blog), I can add you to the blog author list so you can create a new post for your husbands case. In the meantime we can use this thread.

      Delete
    4. Stephen W14 August 2018 at 11:30

      Your husband's oncologist appears to have a limited toolkit if he's not able to offer any salvage therapy.

      If true progression is confirmed, and you're able to travel, the following European trials are interesting:

      https://clinicaltrials.gov/ct2/show/NCT03294486 (this is a French trial, and not dissimilar in principle to the Tocagen therapy offered in North America, Toca511+ FC)

      https://clinicaltrials.gov/ct2/show/NCT02866747 (also in France, a trial of hypofractionated radiation with or without immune checkpoint inhibitor durvalumab)

      There are trials recruiting in the UK and Spain for EGFR-directed antibody-drug congjugates, if his tumor if his tumor is positive for EGFR amplification (was this tested?).

      There are also trials in the UK and Spain with immune checkpoint inhibitors for advanced solid tumors. Of all these trials I like the first one mentioned above the best (the oncolytic virus/gene therapy trial in France).

      Do you have any other pathology information beyond the MGMT, IDH1 and ATRX results?




      Delete
    5. Unknown14 August 2018 at 14:08

      Hi Stephen,
      Thanks so much for your quick and considered response.

      I am totally ignorant regarding trials and bit anxious..
      Is your preferred trial the first of its kind on humans or does it have evidence of success?
      Statistically relevant?...
      Please forgive my ignorance..

      Joe's oncologist has tried various options with other patients, but is reluctant to offer anything for Joe.
      When I queried about possible immunotherapy, he replied it could cause terrible diarrhoea and that Joe wasn't fit enough to do it?
      He said he could suffer terribly, lose 10kg and he's not happy to do it to someone as sick as Joe...?

      Joe's not underweight for his height, but maybe he is referring to his recent stroke and left side partial paralysis?
      I will enquire about this again..

      He said he could offer Bendamustine to Joe but that he doesn't really like it.
      He said he's tired of giving standard care and it not working and that he's pushing forward to change this in near future.

      This is his profile which I think looks quite impressive? www.uclh.nhs.uk/OurServices/Consultants/Pages/DrPaulMulholland.aspx

      I will ask oncologist if there is any more pathology test results for Joe.
      Which pathology tests would you recommend I ask Joe's oncologist please?

      Also, do you recommend Joe follows any
      Repurposed drugs like Prof Williams?
      Or supplements?

      Many thanks, I'm very grateful for your time and support
      Jane

      Delete
    6. Stephen W14 August 2018 at 17:45

      Hi Jane, I'm going to copy your original comment and most recent comment into a post of its own, as it deserves its own post.

      Delete
  2. Anne Marie10 July 2017 at 00:36

    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. Anonymous11 July 2017 at 02:42

    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

    ReplyDelete
  4. Anonymous11 July 2017 at 02:46

    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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    Replies
    1. Anne Marie12 July 2017 at 13:44

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

      Delete
  5. Jo Jo11 July 2017 at 06:56

    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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    Replies
    1. Anne Marie12 July 2017 at 13:50

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

      Delete

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