Tuesday 27 February 2018

My daughters GBM

Hi Stephen
Thank you for adding me to the authors list, the information available to all and from all is absolutely invaluable to everyone having to deal with this disease under the current medical regime.
My daughter was diagnosed while living in London in 2016.
She was 26 at the time and 22 weeks pregnant.
It was a large Bi frontal tumor, IDH1 mutation and Methylated 25%.
They completed a partial resection/debulking at the Royal London Hospital, but did not remove the majority of the tumor due to safety risks as they seen this at time.
After a month of recovery, we brought her home to Australia and made arrangements for her to undergo further surgery with a specialist Neurosurgeon in Sydney.
This was a lot more successful with 99% of remaining tumor removed.
Radiation and chemo had to be delayed for almost 2 months until her unborn child had developed sufficiently to be delivered by C section.
This also went well, and she started radiation and standard chemo (Temodar) in early December 2016.
She followed a few alternate treatments from early January 2017 including a vaccine clinical trial in Buffalo NY, followed by Hypothermia treatments in Germany before returning home to Australia in May 2017.
MRI's showed little if any progression up until August, and anything her surgeon could see he believed was residual from the radiation.
Her last MRI at that time was August 7th, which was supposedly still good, and by September 20 she was admitted to hospital with migraines and a temperature.
The following MRI and CT scan showed there was significant disease progression and oedema.
In October 17 i returned to the United States looking for a clinical trial that she may be eligible for.
It became more of a risk for her to undertake a long haul flight, so at the advice of every medical professional was that she start a maintenance treatment program of PCV (without Vincristine) and Avastin.
During this period, like many of you readers, we found the Ben William's story, and as we were not given any options that presented any hope, we have embarked on the same voyage as the followers on this blog.
She had her first standard Avastin treatment on November 14th followed by standard dose of Lomustine on November 20.
Her platelets and neutrophils went into free fall, requiring several platelet transfusions, and was unable to have Lomustine again (50% dose) for another 9 weeks, she continued on avastin at 3 weekly intervals.
As of January 15, i managed to persuade her oncologist to prescribe the Low dose avasin and i introduced the ACE inhibitor Trandolapril.
She is due again this Monday for the lower dose Lumustine.
The other prescription drugs that i have introduced since November are as follows;
20/11/17 Metformin 500mg twice daily
12/12/17  Tamoxifen 160mg daily split x 3 time a day
15/12/17 Low dose Naltrexone 4.5mg at night
15/12/17 Melatonin 20mg at night
15/12/17 Trandolapril 4mg morning
9/1/18 Celebrex 200mg daily (waited for her stop Dex)
17/1/18 Accutane 140mg daily split x 3 times a day 2 weeks on and 1 week off
19/1/18 Verapamil 480mg daily split morning and afternoon week of chemo only
Introducing Antabuse 400mg daily this Thursday prior to chemo next Monday.
We have been doing MRI's monthly since December 5 (at our own expense)
The last 3 MRI's have shown it as stable, no further disease progression.
My real concern presently is she has lost the majority of mobility in her left hand side, her left shoulder is drooping and her difficulty in walking is getting worse.
When the tumor reoccurred it came back in the ventricles, but she is mentally sharp without any headache or nausea. Has anybody else experienced the same symptom?
Can you tell me how people best target Disulfiram around chemo time (dosages) rather than daily dosages.
Her next MRI is on Monday 5th March
Kind Regards
Martin

12 comments:

  1. Hello Martin,

    have you checked into Toca 511 trial, which had some pretty nice outcomes (complete durable responses) for IDH1 mutated gliomas? I haven't taken anything of the following supplements, but I think Boswellia may help with oedema and PSK&chlorella with platelets. There were some advices on increasing platelets on this blog, maybe search around a bit (search function in top left corner). Also don't forget to check Stephen's ranked list of supplements on Google Drive, where you can also find a lot of important studies. Maybe also check out vitamin D3 and curcumin (most of us are using Longvida), which are easy to obtain and could be beneficial.

    Best of luck!

    ReplyDelete
    Replies
    1. thank you Matjaz and Stephen for your responses.
      I do have to look seriously into supplements for her, but as i felt that i was racing the clock i put all the time into the drug side of treatment first.
      Fortunately i have an exceptional family doctor so i have had no problems acquiring the medications.
      Apart from the low dose avastin, her oncologist wont entertain anything.
      She has been on some over the counter supplements from the start, but i thought my initial post was a bit long and drawn out, so i thought i would leave them until now.
      Boswellia complex 3 per day containing;
      Boswellia Serrata gum oleoresin stand 1.9g
      Curcuma longa rhyzome 2.0g
      Apiumgraveolens fruit 1.0g
      Zingiber officinale rhizome 300mg
      Vit B12 once a day
      Vit D3 twice a day
      She has weekly blood tests and all elements have stayed within normal range so i am not sure what other supplements to use at the moment.
      Any suggestions would be greatly appreciated.
      I also have a PSK supplement called Imrex which contains Retinyl palmitate
      Cholecal 4250IU (vitamin A) so i havent used it because she is taking Accutane.I haveny found a PSK supplier locally that can provide it without the Vitamin A, so i will look at what i can order on line.
      I haven't looked at Copper, so thank you Stephen for picking that up.
      Any views on her mobility issues?
      I will attempt to find my way to Stephen's ranked list of supplements on Google drive.
      I was planning on using 400mg of Disulfiram at night for the week surrounding chemo then maybe 200mg daily week on week off to avoid neuropathy if possible.
      Regards
      Martin

      Delete
    2. I don't know if we're talking about same PSK supplement. I meant polysaccharide krestin (mushroom extract), which *should* stimulate immune system. If you're from USA people are ordering from Mushroom science https://mushroomscience.com/products/, I'm from Europe and I'm ordering from Oriveda https://www.oriveda.com/. If you order from Oriveda, you can get around 50% discount if you order in bulk (1kg of pills).
      With curcumin there is a big problem with bioavailability and crossing the blood brain barrier and I think only Longvida brand has a credible study of their curcumin getting into brain.

      Delete
    3. Matjaz, could you help me and advise please. I am trying to collect a GBM coctail, but its' like walking in a dark room.

      Regarding PSK, would it be OK this one
      https://www.oriveda.com/e-coriolus_psp.php

      I am not sure if it should/better be combined with another mooshrom extract. The patient is on CCNU+TMZ and sufferes of fatigue and low platelets counts. Also, which Longvida product you use, I found many at Amazon
      https://www.amazon.de/longvida-curcumin/s?ie=UTF8&page=1&rh=i%3Aaps%2Ck%3Alongvida%20curcumin

      We live in Poland.

      Delete
    4. I'm using the PSK (actually PSP) extract which you linked. As mentioned before, if you contact them via email and ask for bulk order (1k of pills - ± 2850 capsules, will cover 476 days at dosage of 6 capsules daily), I got it for 600 € last year - which is around 50% discount from the price on the link.

      As a lot of other patients, I use Longvida Curcumin (2g/day)...at the moment I think it is the cheapest on https://www.iherb.com/pr/Now-Foods-CurcuBrain-Cognitive-Support-400-mg-50-Veg-Capsules/57292 (if you also take postage and some volume discount into account).

      Regarding cocktail...I think it is not really an *exact* science. Check Google drive, folder Important reference documents, where Stephen ranked the supplements.

      I had gross total resection of low grade oligodendroglioma and no other therapy, so I'm taking "maintenance" cocktail, which doesn't really have any adverse side effects (besides on my wallet :)). I'm taking vitamin D3, selenium, magnesium, metformin, omega 3, PSK, curcumin, probiotics, zinc, low dose naltrexone and aged garlic extract. People with GBM also take some other over the counter supplements and medication - depending on the mutations of their tumors.

      Delete
    5. Thank you so much Matjaz, it's really helpful.

      Delete
  2. Hi Martin,
    I've not heard of anyone trying disulfiram doses higher than 500 mg per day. Some people use 500 mg per day around chemo days, and then reduce to 250 mg per day in the breaks between chemo or stop altogether. Are you planning to use copper to complement the disulfiram? Clinical trials escalated disulfiram to 1000 mg but this higher dose was not very well tolerated.

    ReplyDelete
    Replies
    1. thank you Matjaz and Stephen for your responses.
      I do have to look seriously into supplements for her, but as i felt that i was racing the clock i put all the time into the drug side of treatment first.
      Fortunately i have an exceptional family doctor so i have had no problems acquiring the medications.
      Apart from the low dose avastin, her oncologist wont entertain anything.
      She has been on some over the counter supplements from the start, but i thought my initial post was a bit long and drawn out, so i thought i would leave them until now.
      Boswellia complex 3 per day containing;
      Boswellia Serrata gum oleoresin stand 1.9g
      Curcuma longa rhyzome 2.0g
      Apiumgraveolens fruit 1.0g
      Zingiber officinale rhizome 300mg
      Vit B12 once a day
      Vit D3 twice a day
      She has weekly blood tests and all elements have stayed within normal range so i am not sure what other supplements to use at the moment.
      Any suggestions would be greatly appreciated.
      I also have a PSK supplement called Imrex which contains Retinyl palmitate
      Cholecal 4250IU (vitamin A) so i havent used it because she is taking Accutane.I haveny found a PSK supplier locally that can provide it without the Vitamin A, so i will look at what i can order on line.
      I haven't looked at Copper, so thank you Stephen for picking that up.
      Any views on her mobility issues?
      I will attempt to find my way to Stephen's ranked list of supplements on Google drive.
      I was planning on using 400mg of Disulfiram at night for the week surrounding chemo then maybe 200mg daily week on week off to avoid neuropathy if possible.
      Regards
      Martin

      Delete
    2. Martin, I've just shared the Brain Tumor Library (on Google Drive) with you. You should get an email with a link to it.

      Delete
    3. Got it thank you Stephen

      Delete
    4. Hi Stephen
      My compounding pharmacy can make up Copper gluconate capsules for me, but not in time for this weeks scheduled chemo. Is there any problems in giving her Disulfiram this time without the Copper, or would it be better to hold off.

      Delete
    5. It's okay to give disulfiram without the copper. There is enough copper already in the blood for disulfiram to combine with, and some credible researchers feel that adding extra copper isn't even necessary. However some animal studies show giving additional copper increases the anti-tumor effect of disulfiram.

      Copper gluconate should be available for purchase online also.

      Delete