I am mostly reader of this blog, and I found many useful information and hope. Simultaneously, I tried to be as anonymous, as it is possible. Sometimes I afraid to even name the beast we face.
But now our situation looks dramatic and I seek help and additional information.
The short story: a young adult, diagnosed almost one year ago with a front lobe tumor (gliosarcoma). There were no prior symptoms, only sleepiness prior to a major seizure.
After double surgery at the end of July 2017, we spent a month recovering from complications. Next, our doctor administered irinotecan+carboplatinum. After 2 cycles of the chemo, we passed through 6-weeks radioteraphy with maximal possible doeses and TMZ administered daily. Next, from December: once cycle of TMZ and 3 cycles of TMZ+CCNU. MRI's at the early January and at the middle of April indicated stabilization.
Unfortunately, MRI at the end of June reveals contrast enhancement and a new diffused area outside the primary site. Our doctors say its most likely non-resectable recurrence and or progression, and they changed the chemo to a new combo (topotecan and dacarbozine). I have asked, whether it could be a pseudo-progression, due to radiotherapy, but they exclude that.
Since December, when I discovered this blog and the Ben's book, we introduced some supplementation, including PSK/grifolan, bee-honey products, curcumin, berberine, fish oil, boswellia, 5-10 mg of melatonin, syllimarin. I was very afraid of including any of ``the regular drugs'' in coctails mentioned here.
The current neurological status of the patient is essentially stable and reasonably good, and we did not notice any particular symptomps indicating the progression.
I seek for any information, whether the new drugs could be supported by the coctail approach, and perhaps there are persons who have undergone a similar treatment. I am thinking on a few most frequent drugs (CQ, metformin, celebrex, melatonin in high doses), as well as POH. Unfortunately, we have no information on the genetic status of the disease.
I would be also very grateful for your advice and/or information on clinical trails in Europe, we live in Poland and US/Canada are likely non-available for us.