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Sunday, 25 April 2021

Hi everyone! Thank you for your advice, guidance and experience. I wish everyone a complete recovery!

My name is Kirill, age 33. I am looking for help and advice. On May 20, 2020, I had surgery to partially remove the neoplasm in the left temporo-insula.

Analysis results: A diffuse glioma with infiltrative growth into the brain tissue is revealed. The tumor is represented mainly by the astrocytic component, also a little oligodendrocytic and hemistocytic. Mitotic figures are noted. Cellular density is increased. Reactive endothelium is found in the vessels.

  1. Anaplastic astrocytoma, WHO Grade 3
  2. IDH1 R132 H - mutant
  3. MGMT - unmethylated
  4. Ki-67 up to 15%
There is no exact information, but surgeons estimate about 80-90% removal of the neoplasm. 

I had the following treatment:

  1. Proton therapy course 6 weeks. Radiation quantity 60 GyE. Finished 08/25/2020. At the time, I had no information about additional treatment that you discuss on the forum, so I have not used the means for increasing the sensitivity of the tumor in radiation therapy.
  2. Temozolomide 200 mg/m2 (in my case 350 mg). Standard schedule 5/28.
10/09/2020 – start of 1st course

04/23/2020 – 8 course.

During chemotherapy, I ate large amounts of antioxidant foods (broccoli, berries, green tea, garlic, onions, parsley, etc.). I have a simple diet: whole grains, refusal of meat in favor of fish, refusal of sugars and simple carbohydrates, a lot of vegetables and fruits, greens. I also took: curcumine, boswellia, omega-3, lycopene, resveratrol. Daily walking at least 1 hour.

At the moment, a fairly large cyst has formed at the place of the surgery. MRI 03/09/2021 shows stable results, no positive nor negative changes. PET/ะกT 04/02/2021 shows relapse. The doctors asked for a second MRI to check. The doctors, as usual, are conservative and treat according to the protocol.

After such news, I immediately bought medicines and dietary supplements, which are recommended on the forum.

Medicines:

  1. Levetiracetam
  2. Fluoxetine
  3. Mifepristone
  4. Hydroxychloroquine
  5. Metformin
  6. Valaciclovir
  7. Disulfiram
  8. Minocycline
  9. Atorvastatin
  10. Mebendazole
  11. Tamoxifen
  12. DCA
  13. Celecoxib

I would be grateful for your help, whether they suit me and how to combine them all.

Dietary supplements:

  1. Berberine
  2. Fungi Perfecti, Stamets 7
  3. Fungi Perfecti, Host Defense Turkey Tail
  4. Now Foods, EGCg, green tea extract, 400 mg,
  5. Life Extension, optimized resveratrol
  6. Life Extension Boswellia serrata
  7. Curcumin SLCP
  8. Now Foods, silymarin
  9. Solgar, vitamin D3 5000 ME
  10. Now Foods, ultra omega-3
  11. Life Extension, Mega Lycopene

I really want the tumor to shrink. Thanks to your forum, I plan to:

  1. Switching to the metronomic schedule Temozolomide, dose 70-80 mg / kg2. 3 weeks taking, 1 week off. Or without interruption if I have enough strength.
  2. Add Levetiracetam, Fluoxetine, Disulfiram, Valproic Acid to reduce the effect of MGMT
  3. Add Metformin for blood glucose control.


Thank you for your opinion and advice:

  1. What medications can be added (or removed), in what dose and for how long should I take it?
  2. Is it a good idea to add Agomelatine before taking Temozolomide on a metronomic schedule?
  3. How do Levetiracetam and Fluoxetine interact, how and in what quantities is it better to take them together?
  4. What do you think about Temozolomide + Tamoxifen at this stage? I am thinking about Tamoxifen, because for a year now I have a very high level of estradiol, always the very upper limits. I heard that it could somehow relate to a tumor. I also know that Ben Williams has been taking Tamoxifen on a regular basis. I know that Tamoxifen is not very friendly with Fluoxetine...
  5. Please suggest a different scheme if you have different opinion.

If such a scheme does not bring the desired result, then I plan to take Lomustine. Since I heard that Lomustine may be useful in the case of Astrocytoma-Secondary glioblastoma independent of MGMT.


Thank you for your opinion and advice:

  1. Do I need to add drugs that reduce the effect of MGMT? Maybe there is a better combination of Lomustine with other drugs? Or is Lomustine not the best option / combination?
  2. What medications can be added (or removed), in what dose and for how long to take?
  3. Please suggest a different scheme if you have different opinion.


What are your thoughts on having several different short courses of chemotherapy? Ben Williams drastically changed his schemes so that cells did not have time to mutate, adapt and survive.

  • Maybe TMZ + Tamoxifen
  • Then BCNU (Carmustine)
  • Then Procarbazine, oral Lomustine (CCNU). This regimen is known as PC
  • Then TMZ + ??? or Avastin + ???
  • + Dietary supplements
  • + in my case reduce the effect of unmethylated MGMT …

What combinations can fit in my case?


If there will be a second operation, what is the best way to build a more effective treatment with the information already available?

I think there may be several options:

A) Radiation therapy may be prescribed.

I will do the following:

1) Adjuvant therapy Temozolomide + reducing the effect of unmethylated MGMT (Levetiracetam, Fluoxetine, Valproic Acid + ???)

2) I will add drugs that will increase the tumor sensibilization to radiation therapy.

What exactly to add and in what doses in my case?

 

B) They may refuse the radiation therapy and prescribe chemotherapy.

What is the best way to start chemotherapy? Should I continue Temozolomide on the metronomic schedule or change something?

I have a great need to find a specialist, an experienced person with whom there could be a personal connection during treatment. Can you help with this, Stephen?

Also, I really want to help in the development of the project, how can I donate?

Thank you very much for your opinion and support.

at

1 comment:

  1. Stephen W3 May 2021 at 19:59

    Hi Kirill, sorry to have kept you waiting for a reply. I have to tell you up front that I'm no longer very active in cancer research, and have kept this blog up mainly for the archive of information it contains. I'm no longer able to provide detailed answers the way I used to do. But I can give you some general comments.

    I can tell you've done a lot of reading, and are enthusiastic about alternative and complementary treatments, and this is good.
    One pitfall is that much of the research that supports many of the drugs you've listed was done for glioblastoma (IDH wild-type) which is biologically/genetically/epigenetically a different tumor from an IDH1-mutant astrocytoma.
    As a researcher I did focus a lot of my energy on IDH1-mutant astrocytomas, because this is the type of tumour my friend was diagnosed with in 2013. Also, Ben Williams tumor was found to be IDH1-mutant.
    I wrote a couple of review articles on this type of tumor on my old website.

    http://astrocytomaoptions.com/idh1-mutation/
    http://astrocytomaoptions.com/exploring-strategies-for-idh1-mutated-gliomas/
    This second article reviews Ben Williams' case about two thirds of the way down the page


    In the Brain Tumor Library folder on Google Drive I also created a document called "Drug list for IDH1 mutant gliomas (preliminary sketch)", and this is found in folder 0: Important Reference documents. Unfortunately there is comparatively little clinical or preclinical research on this type of tumor in contrast with the more common adult type of glioblastoma (IDH wild type). So there is much less evidence to work with.

    Recently there has been some research on PARP inhibitors (such as olaparib etc) for IDH1-mutant gliomas.

    As for conventional chemotherapy, procarbazine shares a similar, if not identical, mechanism of action with temozolomide. Lomustine on the other hand has a different mechanism of action, despite all of them being considered "alkylating agents". Temozolomide + lomustine has been tested in MGMT methylated glioblastoma and may be more effective than procarbazine + lomustine, given that temozolomide as a single agent seems more effective than procarbazine. The clinical trials that led to the PCV protocol becoming standard for certain types of glioma were actually carried out before temozolomide was in clinical use.
    You can click on the label "temozolomide_plus_CCNU/lomustine" from the list of labels in the sidebar on the right of the blog to learn more about this protocol. All three of these drugs work better in MGMT methylated tumors. Sometimes MGMT status is not so clearcut inside of a tumor - there may be areas where the MGMT promoter is more methylated and some areas where MGMT is less methylated. In any case, drugs like levetiracetam (in higher doses) may help with chemosensitization when combined with temozolomide. As we know, Ben used verapamil on the days around his use of BCNU or CCNU (lomustine). Temozolomide was not in clinical use at that time in the mid 1990s.

    PARP inhibitors may help a tumor become more sensitive to TMZ regardless of MGMT status. Access to PARP inhibitors will likely be challenging, as they are expensive oncology drugs, and not approved for brain tumors outside of clinical trials.

    Speaking of trials, where are you located? Often the best available therapies are only accessible through clinical trials.

    There are several trials in the USA testing inhibitors of mutant IDH1, such as ivosidenib (AG-120) and I know of at least one person with IDH1-mutant astrocytoma who was able to get access to this drug (which is currently only approved for leukemia) outside of a clinical trial, though it took several appeals before insurance would cover it.

    I hope this info helps in some way. As I mentioned, I have had a career change, and spend very little time on research these days, so donations to this blog aren't required.

    I wish you all the best in your research and your quest to find effective therapies. Good luck!
    Stephen





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