Hi all and Merry Christmas,
My 23yo son was diagnosed with a Diffuse Astrocytoma, right frontal lobe. Had an awake craniotomy on Oct 15. According to Dec 6, MRI some may have been left behind due to location at/near motor cortex but surgeon also says could be inflammation or scar tissue. Recommends starting 6 weeks radiation in January, followed by 1 year of chemo (Temodar). Wondering if anyone has ever delayed treatment. Also, what supplements would you advise? Do you take them during treatment? I have searched through other posts but want to make sure I do the right thing according to his pathology report. Thank you so much for your help!
Anatomic Pathology Diagnosis:
IDH-mutant, WHO 2016 grade II
IDH1 R132H positive
ATRX expression with focal loss
1p/19q NOT deleted
Molecular Diagnostics Results:
79 Gene Mutation Analysis - 1 Mutation Detected
IDH1:ENST00000415913.1:c.395G>A; p.Arg132His
TP53:ENST00000269305.4:c.818G>A; p.Arg273His
CDKN2B:ENST00000276925.6c.367C>T; p.Arg123Trp
PTEN deletion DETECTED
TERT gene promoter mutation NOT detected
MGMT promoter methylation NOT detected
EGFR gene NOT amplified
Hello, my husband (38years old at the time) was diagnosed with Grade II Astrocytoma in September 2015, there was no treatment prescribed post-surgery. MRI in January 2016 came clear with signs of post-surgery inflammation and scar but in April 2016 there was an urgent need for a surgery, as the tumour has grown massively. Post-surgery the diagnosis was glyoblastoma Grade IV with 18 months max survival rate... The surgery was followed up by radio and chemo treatment... My husband is still with us and there is no residual tumour left - Thanks to the God and amazing doctors we have throughout the journey! It's difficult to recommend anything in these circumstances but should anyone ask us whether we would go for radio/chemo straight after the first surgery in 2015 while it was still astrocytoma, we would definitely do the treatment to mitigate the risk of developing into Grade IV. Please bear in mind overall health of your son and immune system. My husband been also taking Valgoncyclovir for a year after radio treatment has finished with Temodar, also doing Avastin injections, still does with less frequent intervals ( from 2 weeks to 3 months now). Key focus should be on building his immune system, keep healthy diet ( no wheat, rice, sugar, glucose, lost of fresh fruits and vegetables, only freshly cooked steams/boiled dishes, fresh juices, etc), exercising ( my husband was running every day, starting from 500 meters and getting to 10km/day. That helped him a lot. In addition to that he's been taking DCA + B1 twice a day, keeping to Budwig diet, taking vitamin C, blackseed oil, vitamins A, E, D, transfer factor plus, curcumin, GE132+, etc. Post radio/chemo therapy he's been taking Spirulina and Coral supplements, as well as green juices 4 times a day (spinach, parsley, cucumber, kale, other greens) to flash out the toxins from radio. One of the biggest factors towards the healing is believing in it and keeping the positive attitude. We are Orthodox Christian, so with faith and prayers, our journey is supported by the God! Please bear in mind that his is our experience and you need to develop the plan that would suit your son throughout different stages. As the treatment and approach are changing throughout the years. Happy to answer any other queries you might have. Please believe in full recovery and healing and stay strong, as your son will need that strength coming from you. Have a lovely Christmas! Miracles do happen! With support, Nina
ReplyDeleteWith a grade 2 astro and possible gross total resection, I would certainly think you can easily delay till the next MRI before making treatment decisions. Then you can review options, consider second opinions, investigate clinical trial possibilities and in general get educated to where you feel comfortable making decisions.
ReplyDeleteSome thoughts:
1) the CATNON trial is a very good reference to look at for results of temodar. Its for grade 3 astro, but generally showed that IDHm did significantly better with temozolomide after radiation and somewhat better with TMZ during radiation.
2) Ideally get more info on whether the pathology was in the low range for grade 2 or the high range. Mainly what was the KI-67 number. That will help with treatment timing decisions.
3) Hopefully you are at a major brain tumor center. If not consider getting a second opinion from one. A second opinion may be useful even if you are at a major center already.
4) IDHm inhibitor drugs are a hot topic for low grades. Agios has ivosidenib out for other tumors and you may be able to get insurance to cover it, and they are setting up a trial for their newer inhibitor, AG-881, which is expected to be more effective. Some patients have shown slow tumor shrinkage over a few years with these drugs.
5) Proton radiation is an option to minimize side effects because the field is far more controlled and can be shaped to avoid higher risk zones. BUT because these tumors have an infiltrative behavior it is still important to have a zone outside the visible tumor that still gets full dose (2 cm is often proposed). Proton centers are generally not brain RT specialists, so its important to coordinate with your neuro-oncology to make sure the radiation plan makes sense and they don't contour the field TOO close to the tumor without a solid margin.
5) If you end up doing chemo, another promising area is to add PARP inhibitors to chemo, especially for IDHm tumors. Mostly only in clinical trials though.
Lastly, a really important aspect is for your son (and you and others close to him) to decide what kind of general approach to take thru all this. There is an undeniable cost to quality of life when trying to treat to the max. Finding a balance between how much to focus on trying to improve outcomes and just living the time we have is a real challenge.
Hugs and happy new year!
Thank you for your thoughts!
ReplyDeleteAdditional information I found:
IDH1 R132 is positive by immunohistochemistry.
ATRX expression is lost in a subset of tumor cells.
p53 is strongly positive in 30% of tumor cells.
MIB-1 (Ki-67) proliferation rate is 1%.
Any additional thoughts you have would be welcomed and greatly appreciated.
Thank you!
The main item from that added infor in my mind is that the Ki-67 of 1% confirms that it is solidly a grade 2 and wasn't on the edge of being a grade 3 (which would be more like 8-10% of cells in growth phase). Just re-confirms that you have some time to think thru best options and when to do treatment.
ReplyDeleteNote that in general radiation is considered to have less tendency to drive further mutations to higher grades than chemo. Also chemo is most effective on rapidly dividing cells and radiation too, but radiation also does a good bit of damage to non-dividing cancer cells. So in some senses the lower the grade, the less effective chemo will be.
So if you get some second (or third!) dr's opinions then discussing the option of being more conservative and only doing radiation this year (and maybe even to a lower dose) and waiting on chemo may make sense. Going this route would also probably make the most sense with proton radiation with smaller margins (if its available to you on insurance), though I think then you would potentially want to plan on a second surgery earlier down the road and likely re-radiation plus chemo at that time.
In rough terms there is a tradeoff. Max early treatment will likely be the least variable in outcomes and provide the longest progression free time, but a more aggressive recurrence. Whereas a conservative approach can potentially extend overall survival but mean more in between recurrences, more surgeries, more stress, etc. Unfortunately there is no clear path and it comes down to weighing options and making very difficult decisions.
Bryan