Dear All,
I request your opinion and advice, since our situation is very difficult. A young adult (19 years old) was diagnosed with the GBM WHO IV (gliosarcoma), and further genetic screening revealed the H3F3A G34 mutation, with ATRX, TP53, PDGFRA and others. The treatment was more or less standard Stupp protocol, with adjuvant TMZ+CCNU (as in CeTeG trial) after the chemoradiation. After 8 months from diagnosis and the fourth chemo cycle, a diffused regions appeared in MRI scans, which our oncologists interpreted as progression, and in spite of three independent NO opinions from US, Spain and Poland, they decided to switch the chemo to Topotecan+dacarbazine (DICT). That worked for 8 cycles. During that time we tried to enroll in a few clinical trials but without any success, usually due to the geometry and character of changes, a lack of free places, non-recruiting or closed trials and other circumstances.
Our supplements coctail was rather conservative (PSK, fish oil, melatonin, boswellia, curcumin, berberine, bee products, pterostilbene, ecchinacea, syllimarin) + anti-seizure drugs.
Unfortunately, the last MRI scan made a few days ago shows that the tumor has invaded many parts of the brain, though the primary site is essentially clean. This is a real shock for us, since the previous scan made at the beginning of December, 2018 revealed stabilization and even some improvement when compared with previous scans made on 2-months basis.
Our doctors stand at the opinion that nothing more can be done, and they sent us home (to palliative care). I feel devastated, they give us at most a few weeks.
- Could be a metronomic TMZ (40-50mg/m^2) beneficial in this situation, as the primary tumor was non-IDH1 and likely non-MGMT, that would be the only thing to do, given that the patient has mood changes, lacks of concentration; or any other salvage chemo, Avastin, Nivolumab?
- Do you know or could you recommend a hospital/center in Europe which could provide a second and reliable opinion (like https://www.ucsfhealth.org/secondopinion/)?
Stefan Sobieski
So sorry for your loved one. You could seek consultation from https://www.cancercommons.org/. You could explore treatment with Care Oncology Group. The ketogenic diet has been beneficial to some and is accessible to almost anyone and has no adverse effects. Do you have access to Optune? Avastin could offer a reprieve from symptoms, but does not extend life.
ReplyDeleteSending hope, courage & comfort—
I'm sorry to hear of your very difficult situation. For second opinion you might consider DKFZ in Heidelberg Germany.
ReplyDeletehttp://pediatric-neurooncology.dkfz.de/index.php/en/therapy/second-opinion
(This link was just the first one I found for second opinion at DKFZ, but it might not be the correct one for you at it is for paediatrics and you said the patient was over 18)
Dear Stefan
ReplyDeleteYou might want to check up on using Mebendazole or Fenbendazole with Vit E and Curcumin for at least 6 weeks at min. 200 mg per day.
Read about it here:
https://www.mycancerstory.rocks/
https://www.cancertreatmentsresearch.com/fenbendazole/
https://www.americaninno.com/dc/johns-hopkins-university-johns-hopkins-drug-may-help-brain-cancer-patients/
https://www.npr.org/sections/health-shots/2017/01/30/512400204/a-pinworm-medication-is-being-tested-as-a-potential-anti-cancer-drug?t=1551225444090
I am back after a few months after we lost. I would like to thank you both for the comments, which helped me in the last days. I contacted Heidelberg as well as two leading neurosurgeons in Poland, but they could not change the fate.
ReplyDeleteMy Son passed after a few critical days. His physical state collapsed exponentially but He was aware of that and suffered untill the last day, when he got asleep late morning and did not awake. The beast returned without any warning we could notice. But He never complained, cried nor asked it for mercy.
You Stephen and people in this blog helped me so much. Unfortunately, I think that I was too cautious in the coctail treatment. Perhaps, if the coctail approach was more extensive, my Son could live normal life longer. But it is still something we experiment on not knowing the consequences.
Now I have only memories, his grave, and pain. I finally understood that he was the best man I met in this world.
So sorry for your loss Stefan, my condolences
ReplyDelete