Story of Tetiana from Ukraine (gliosarcoma GIV WHO)

Hi everyone.

This is my first record for your blog. At first, let me thank to Stephen and others who created this platform. It is a really good opportunity to discuss our stories and get a lot of important information.

I have some concrete questions. Although before I have to say few words about myself and my story due to rules of this community, as I realised.

Ok, let's start.



This is a story about me and my sister. We both live in Ukraine. My sister, Tetiana, is 38 years old. In July 2019 she suffered from headaches. Also she lost some skills. E.g., she could not read anymore as all characters and letters “jumped” and “rotated” in front of her eyes. Computer tomography (CT) identified some tumor in her brain. And this was later confirmed by MRI. In early August neurosurgeon of local hospital conducted surgery and extracted newly registered tumor in sisnistrocerebral part of sister's brain. Fortunately, tumor was “pseudo-capsuled” what means it was separated from the brain with a layer of cystic fluid. So, doctor could extract tumor completely and did not damage the brain as itself. Brain was just a bit “crumpled” but in general was not affected. This gave us a pretty good dynamic of post-surgery rehabilitation. My sister can read again, although does it rather like a child, very slowly. But we work with logopedist to upgrade her skills of reading and writing.

Frankly speaking, we wasted many time after surgery because of imperfect diagnostic in my country. One histologigal research identified recently extracted brain tumor as metastasis of fibrosarcoma, another one test figured out this as gliosarcoma. We had to spend couple of weeks for analysis to know the truth. Finally we've got diagnosis: gliosarcoma, GIV WHO, unmethylated MGMT, mutation of IDH1 and IDH2 genes are negative, expression of PD-L1 in a less of 1% of cancer cells.

In early September we started conventional treatment which is combined radio- and chemotherapy (Temodal). We did it in Nu-Med hospital in Poland. Actually, at the beginning Polish doctors recommended just radiotherapy but then added Temodal as well.

Polish doctor told about a risk of sense of vision loss. For my sister this would be critical as she is a painter. But, fortunately, this did not happen. My sister continues to paint. In general, this first stage of treatment was good. At that time we had not any additional medicines and supplements.

Monitoring the web, I have found this blog. And this was very helpful. Before I didn't know it is not allowed to combine radiotherapy and dexamethasone. Thanks to you, guys, we could correct our protocol and cancel this drug appointed by Polish doctor. This doctor was a bit 'oldschool' lady. She was huge opponent of hyperbaric oxygen and ketogenic diet as a part of treatment but a big supporter of  dexamethasone despite of all known risks. We struggled much with her to mitigate the dose first (from 4mg to 2 mg) and then replace it with Celebrex and Boswellia. Later we excluded  dexamethasone completely.

After standard care treatment we've contacted Dr. Clovis Orlando Fonseco da Pereira from Brasil. Following his recommendations we ordered peryllil alcohol (POH) and started regular inhalations in a month after radiotherapy. Then we added other drugs and supplements although out treatment program stills look imperfect for me.

At the moment we have immunotherapy in Germany. IOZK clinic, namely well-known Dr. Stefan van Gool, appointed virotherapy and hyperthermia. We still take Temodal by schedule of 23/5 because Stefan said metronomic take would make immunotherapy non-effective. We also still check our progress with 3 Tesla MRI monthly. We thought to conduct PET as well but Dr. van Gool said it would make sense in our case.

First MRI took place after radiotherapy and gave us a big hope. Only 2-3 mm were contrast-enhacing  following the line of surgery scar and only 5 mm of perfocal edema.

But next MRI done in late December of 2019 was less optimistic. Percoal edema grown up to 7 mm. And new nodule of 6,9x5,6x8,2 mm was registered in sisnistrocerebral part of sister's brain. German doctors recommended to wait and monitor further dynamic and not change treatment strategy at the moment.

I do not appreciate this approach. As I understood reading your stories here, there are more chances if patients try get ahead of tumor growth. And those who just react on consequences are in worse situation. I still have an impression our steps are not radical or effective enough.

Now daily 'cocktail' of my sister looks like this:

POH inhalations 3-4 times per day with a gap of 4-6 hours in between.

Ketogenic diet. Believe me, it wasn't easy to reach! I will write separate story with our experience later.
9:00 Memantine 10mg
Curcumin Longvida – 3 capsules by 400 mg each
R-Lipoic Acid 2х240 mg - 15 min - 2х240 min - 40 min
Breakfast.
After breakfast:
Celebrex 200 mg
Boswellia WokVel 2 capsules
Omeprazole 20mg
Resveratrol 1000mg
Kalinor 600 mg
HCActive Garcinia Cambogia (70% HCA) 2 capsules
Benfotamine 2 capsules by 250mg each
DHA 700mg 1 capsule
EGCG 1 capsule 725mg
Acetyl-L-Carnityn 1 capsule 500 mg
PSP - 50 3 capsules by 350mg each
Metformin 500mg 1 capsule
Dekristolvit D3 2000 I.E. - 1 capsule 50mg

Before lunch - Curcumin Longvida – 3 capsules by 400 mg each
Lunch
After lunch:
Propranolol 40mg
Silymaryn 1 capsule 450mg
Metformin 500mg 1 capsule
PSP - 3 capsules
Berberine 2 capsules by 500mg each
Boswellia WokVel 2 capsules
DHA 700 - 1 capsule
Vitamin B1 - 1 capsule 100mg
Acetyl L- Carnitine - 1 capsule
Selenium - 1 capsule 200mcg
Omeprazole 20mg
Fluoxetine 40mg (added after alarming MRI)
Delagil - 1 pill 250 mg (added after alarming MRI)
Zinc 50mg (added after last MRI and then will escalate dose up to 100mg during 'Temodal week')
Lycopene 1 capsule 10mg

Before dinner:
Curcumin Longvida – 3 capsules by 400 mg each
R-Lipoic Acid 2х240 mg - 15 min - 2х240 min - 40 min
Dinner
After dinner:
Celebrex 200 mg
Boswellia WokVel 2 capsules
Omeprazole 20mg
Resveratrol 1000mg
Kalinor 600 mg
HCActive Garcinia Cambogia (70% HCA) 2 capsules
Benfotamine 2 capsules by 250mg each
DHA 700mg 1 capsule
EGCG 1 capsule 725mg
Acetyl-L-Carnityn 1 capsule 500 mg
PSP - 50 3 capsules by 350mg each
Dekristolvit D3 2000 I.E. - 1 capsule 50mg

22:30 Memantine 10mg
Before sleep: 2 pills of agomelatine by 25mg each, 1 pill of melatonin by10gr

Dose of zinc and green tea are expected to escalate in 2 times during closest Temodal cycle.

Also we going to add low-dose naltrexone (LDN).

Metformin will be escalated up to 2000mg per day. We a bit scared to raise a dose too quickly considering our ketogenic diet.

Those are questions we have:

1. Doest it make sense to take delagil without sirolimus?
2. Is 40mg of  Propranolol a therapeutic dose?
3. Stefan van Gool told that DCA protocol and LDN protocol (Methablock) are equial and it doesn't make sense to take both. Is it right? I mean I don't doubt his knowledge but probably I didn't understand him correctly because of language barrier.
4. Does it make sense to add Keppra in absence of convulsions keeping in mind it decreases MGMT expression?
5. How we can make Temodal to work? Before I found some posts about high-dose litium but can not find it again :(
6. Is there any specific measures for gliosarcoma? As I realised, this type of tumor is sensitive to radiotherapy only. Is it correct for targeted radiotherapy as well?
7. After this last MRI I don't lke the idea to wait until tumor's growth up to 1cm. Do you think it makes sense to require any additional supplements right now?
8. On DCA. On the website about this medicine it is recommended to calculate dose according to 'ideal' but not real weight. And then take 30mg per each kilogram of body weight having cancer of grade IV. Take 2 weeks and then make a break of 1 week. Following those formulas we have to take 1500mg per day. But here I saw stories of people who take 12mg per each kilo of real weight. Maybe we calculate t wrongly? Do you think it makes sense to take DCA daily without breaks having unmethylated MGMT and bad forecast in general?

Many thanks to those who went through down to this paragraph. I would really appreciate your advises.

Finishing this, I want to say my sister lives with a full life, feels good and works hard painting her pictures. In February she and her husband (he is painter too) going to have wedding. I will let you know when it's time for greetings.

And please see below a small angel painted by my sister. This is her gift to all of you.

All the best.