Hello all,
I'm currently 40 weeks pregnant and about 20 weeks ago had a seizure, resulting in the discovery of a brain mass suspected to be a grade 2 Oligo. I'm working with Dr. Wen at Dana Farber and the plan is to recover from birth, then move forward with surgery, etc.
I'm wondering what advice you'd offer to someone in my situation? Diet, supplements, surgeons, etc? What off label drugs and treatments should I consider to delay or prevent recurrence? I've read through Ben Williams publications and spoken, via email, with Ben and Rich Gerber. They provided their recommended drug and supplement lists.
I've read about the DCvax-l and see its promise. I'm British and recently learned the only place to likely get it is in London. So I've reached out to them but I'm not sure they're administering it for low grade glioma?
There are also a few clinical trials out of UCSF that I may be eligible for (IMA950, Poly-ICLC with or without Variliumab or Pulsated tumour lysate with Poly-ICLC). Can anyone tell me more about those? I've read Poly ICLC shows promise.
Thank you all for your time and advice.
Maria
First, I think you should pat yourself on the back for having done a lot of important research and study. This is surely a stressful situation to be in.
ReplyDeleteThough this particular treatment might not be readily available to you, there are a number of trials of immunologic interventions that you may find promising. See:
https://clinicaltrials.gov/ct2/results?term=grade-II+%28glioma+OR+astrocytoma%29&recr=Open
It looks like much of the active clinical trial work is in NYC and San Francisco, I didn't see anything of relevance near Boston.
It's hard to know what to recommend before surgical pathology is available.
I hope this helps.
Hello Maria,
ReplyDeleteI also was diagnosed with low grade glioma almost 2 years ago. You can find my topic on this blog, search "matjaz". I did A LOT of research, because the doctors in my country wanted to go with "wait and see", so I didn't get much help from them. I later found excellent neurosurgeon in France and proceded with surgery.
Looking back, I think I would do everything the same:
a) I think the first step is to remove as much of the tumor as possible, while preserving quality of life. For that you need good neurosurgeon, one with experience. I think there was a topic on this forum, with recommended surgeons for different countries. In Europe I recommend dr. Duffau from Montpellier, where I also underwent my resection.
b) I truly believe in cocktail approach. It is hard to say how aggressive you should be with low grade glioma, since some studies suggest that chemotherapy can cause hypermutation and recurrence of higher grade glioma. I had complete resection with a small "safety" edge of "healthy" tissue around the tumor, so now I am on watch and wait. Meanwhile I am taking a "maintenance" cocktail in hopes of preventing/delaying recurrence:
5x 600mg Mushroom Science Coriolus Super Strength
1x 4,5mg LDN
1x 5000 IU Vitamin D3
2x 850mg Metformin
4x 500mg Nutrivene Longvida Curcumin
2x 1000mg Super Omega 3
1x 100 mcg Selenium
1x 10mg Melatonin
If there will be any recurrence noted on my 6 month MRIs, the plan is to reoperate as many times as possible. Chemo/radiation therapy is being hold off, until this won't be possible any more or it would recurr in higher grade. Oligodendrogliomas with 1p/19q codeletion tend to respond to chemoradiation therapy.
Immunotherapy really is showing promise, but I think we are not quite there yet. There are advances being made every day and with a slow growing tumor you may have some time to spare, so the immuotherapy gets "optimised" for low grade glioma patients. If you will proceed with clinical trial, maybe also check IDH1 inhibitors, since most low grade gliomas have that mutation.
I think you should go 1 step at a time - have a surgery, see how much they will be able to get out, what will the pathology show and then decide on further therapy.
What is the location of your tumor and approximate size?
Take care,
Matjaz
Also, ask Stephen to add you to brain tumor library on google drive. There you have a lot of important studies organized in folders.
ReplyDeleteThank you all.
ReplyDeleteIt is 3cm, left frontal lobe.
Where was yours and how much tissue around it were they able to remove?
I had around 2,5cm in right fronto-temporal lobe. Towards the midline they could only remove few more extra mm of "healthy" tissue.
DeleteI read the last few publications from dr. Duffau, where it is stated that tumor cells are found even 2 cm away from MRI margin of the tumor. I think in most cases it is impossible to remove 2 cm margin around the tumor, but even after small margins or no margins at all, some people don't have a recurrence. In 2 studies I found there was no recurrence with complete resection in all patients (n=6) who had pre-op tumor volume less than 10 cm^3, with a median follow-up around 10-15 years. Also I found few people through message boards like these, who had no relapse after 18 and 26 years - so there is hope :)
Do you have that study?
Deletehttp://www.sciencedirect.com.sci-hub.cc/science/article/pii/S0028377016301333
DeleteJust wanted to add that recruitment for DCVAX was stopped afaik
ReplyDeleteIn London too?
DeleteI don't know if there is a trial or differenc for a low grade Oligo. GBM trial was stopped mid 2016 (for sure US / Germany, so U.K. Probably too). Between the lines our NS told us that outcome was not as expected. Hence, you should probably not focus on DCVAX and look for different approaches.
DeleteForgive me for going slightly off track, but Matjaz - I've seen studies indicating hypermutation after treatment for LGG using Temozomolide, but have you seen that with other chemo' agents too? I ask because I was resistant to chemotherapy, but my daughter underwent twelve months of Vinblastine and did very well under it - a year later and she's as healthy as I've ever known her. Hence, if there's no record of hypermutation for a chemo drug, I don't think you should discount that treatment for LGG entirely. But you should be circumspect about which chemotherapy treatment you choose...
ReplyDeleteHypermutation is specifically associated with alkylating chemotherapies, and even more specifically with temozolomide. There have been cases of hypermutation following CCNU or PCV (containing CCNU and procarbazine), but there is some reason to believe it wouldn't be as common with CCNU as with temozolomide. I've never seen documentation of hypermutation for gliomas following other classes of chemotherapy (such as vinblastine).
DeletePlease don't get me wrong, I didn't mean to discout chemotherapy treatment for LGG! I just wanted to say to be cautios about chemotherapy. My opinion is not to use it as first line treatment if there is surgery (/reoperation) available.
Deletehttps://www.ncbi.nlm.nih.gov/m/pubmed/21548750/
ReplyDeletehttps://www.ncbi.nlm.nih.gov/m/pubmed/26530708/?i=2&from=/21548750/related
Here are 2 that I came upon recently. My doctor says mine is in a "relatively good" location but I'm not sure what he means by that exactly.
Matjaz or others, what about diet and other such things? I've read that hyperglycemia is an independent factor for recurrence and malignancy progression. I've also read that low circulating insulin growth factor is important.
Hi I'm sorry to ask about something completely unrelated. I just wanted to know if there is a sugar free syrup form of boswellia for someone who cannot swallow a pill? Or maybe a crushable tablet?
ReplyDelete