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Good afternoon, Stephen and all!

Thank you so much for this blog, for the large amount of useful information that can be found here. This is very important for everyone who has faced such a terrible disease. We would like to tell you about our situation and we really look forward to your help, since we do not know at all what is best to do in our case. My sister (48 years old) was diagnosed with glioblastoma multiforme in April that affects affecting the insular lobe of the telencephalon and the right frontal lobe of the brain (IDH wild type; MGMT is unmethylated; ATRX obtained). At the moment, we do not have any other data on genetic mutations, a full genetic analysis will be available only after 3 weeks. 4 days after diagnosis, an operation was performed to remove the tumor, a resection of more than 95%. During the operation, a displacement of the neoplasm with affecting the pyramidal tract (about 8 mm) was found. On the third day after the operation, my sister was already perfectly normal, feeling quite satisfactory. At the end of May, a course of radiation therapy began, 6 weeks (TMZ 75 mg / m2 per day, concomitant radiotherapy 59-60 Gy). Immediately upon completion of the course, edema began to develop, tumor recurrence was recorded, and the condition began to deteriorate steadily. The size of the new tumor at that time was already slightly larger than the removed one. We attribute the deterioration of the condition to the consequences of therapy, since a month and a half from the operation to the start of therapy, everything was fine. As a result, the sister began to choke, it became difficult for her to walk and talk, constantly lacking oxygen. Dexamethasone 12-8 mg began to be used. In July, we had an MRI in one of the best clinics in Germany (where the first operation, radiation, chemotherapy was performed), as a result of which German doctors refused us and gave us a couple of weeks ... By the end of July, she practically stopped moving on her own, could only reach from the bed to the toilet and vice versa, her left arm was almost inactive. In August, we started using Optune, took a chemotherapy course (TMZ, 240 mg / m2 for 5 days). In early September, literally a day after the completion of chemotherapy, the condition became critical, she simply did not wake up in the morning. Doctors were able to perform a miracle, brought back to life. And they insisted on a second operation, which became, as it turned out, the last available opportunity to save her life (without an operation, it's a matter of days). The operation was carried out on September 13, the tumor was removed by 90%. Dexamethasone 3 days before surgery - 20 mg, now reduced to 5 mg. A biopsy revealed that the removed tissue is radiation necrosis. But doctors can not be sure about the remaining 10% - this is necrosis or nevertheless a tumor. After the operation, the sister successfully recovers, the doctors are satisfied with the process. Memory, speech, motor functions were not affected. Now she can take several dozen steps a day with support. Every day we work out with a fitness trainer, two days ago we started going to the pool and exercise on a stationary bike. A few days ago MRI was done, the tumor does not develop, the displacement decreased by half.

And now the main thing. We need to decide on the next steps. We wanted to participate in poliovirus trials in the USA, but they refused (complex tumor location, low Karnowski score).

Considered as options for participation in studies of the Canadian vaccine VAL-083 (interested, because its effect does not depend on MGMT methylation), the DCVax vaccine. But at the moment for us it is all inaccessible in connection with the functional state of the patient.

In addition, immediately after the second operation, we sent the tumor material for the manufacture of the dendritic vaccine. Our neurosurgeon (who performed the second operation) spoke out against its use. But we still plan to try it. Avastin was abandoned, and in general, we are actively studying alternative medicine options, we want to make our own cocktail. But while we still haven’t figured it out enough, we don’t understand how to correctly compile it, what additional information is needed for this. It’s very scary to harm her! We are afraid of the traditional treatment, because before our eyes a person literally died away with its use. And now, every day, even small, but progress and improvement is noticeable. And we are afraid to make a mistake in the independent choice of funds - what if she suddenly gets worse?

Do you believe in alternative methods in general or choose traditional treatment?

Has anyone tried soda solutions, what do you think of this method?

I understand that the question is very vague, that everything is very individual, and now I’m carefully studying all the information on the blog, but maybe you can recommend which drugs you should definitely pay attention to? What worked for many?

We will be very grateful for your reply!

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