This came in to my inbox, and I was asked to post it to the blog:
My son was diagnosed at age 17 with IDH+ 1p/19q negative left frontal lobe oligoastrocytoma...possible recurrence (vs. incomplete resection) at age 18 treated with surgery and proton therapy (no chemo). At the time of starting proton therapy, it was felt that there might a small left-over area in the middle of his tumor bed--but all scans clean for years. He has done fairly well for years with no treatment. His aim has been to be a neurologist...graduated college Phi Beta Kappa, very good MCAT scores, and now first year medical student. 6 month scan today shows a 6.6 mm nodule enhancing in the middle of his tumor bed. Never had enhancement before. Understandably, I am devastated. He is not certain that he wants more surgery. However, it is not near a critical structure. BUT....if there is treatment after surgery, want surgery done at place where could be coordinated with further treatment. I have been reading your blog daily for years and greatly value your wisdom (based on evidence-based medicine) and that of many of your commentators.
Thank you so much for any help!!
Showing posts with label oligoastrocytoma. Show all posts
Showing posts with label oligoastrocytoma. Show all posts
Monday, 18 December 2017
Wednesday, 10 May 2017
Oligoastrocytoma grade 3, progression, next steps?
Hello all and thank you for this great community!
My sister (30yrs) was diagnosed with anaplastic oligoastrocytoma GIII a year ago. This was a reoccurence, since 5 years ago it was oligoastrocytoma grade 2. Back then she received surgery + 8 cycles of TMZ.
This latest one was partially removed in surgery (it's in temporal lobe). She received RT + TMZ (60Gy, 30days) and after that she has completed 10 TMZ cycles. Latest MRI showed that there might be tumour progression, but it's not definite according to doctors. Next scan will be in two months. Until then she will continue on TMZ for two cycles more.
We're a bit concerned since part of the tumour is still there even after RT and chemo and it might be progressing.
PAD report says: IDH1 negative, mitosis 33/10 HPF, MIB activity 25%,
Previous tumour showed 1p19q deletions.
We have asked for a more specific analysis of the tumour and will receive results in couple of weeks (MGMT, EGFR, etc.).
Until then, our NO recommends to continue with TMZ and see what MRI shows in July.
We have plans to try Keytruda or other aPD1, what's your view? Or is there some other sytostate (CCNU, PCV) we should try before aPD1 ?
Her clinical condition is very good so we try to balance between good quality of life and try to treat this when there's better changes for that.
Supplements she currently takes:
-D3
-Selenium
-Longvida Curcum
-Probiots (L. Casei et al.)
-Leveriacetam
br and thanks,
Juha
My sister (30yrs) was diagnosed with anaplastic oligoastrocytoma GIII a year ago. This was a reoccurence, since 5 years ago it was oligoastrocytoma grade 2. Back then she received surgery + 8 cycles of TMZ.
This latest one was partially removed in surgery (it's in temporal lobe). She received RT + TMZ (60Gy, 30days) and after that she has completed 10 TMZ cycles. Latest MRI showed that there might be tumour progression, but it's not definite according to doctors. Next scan will be in two months. Until then she will continue on TMZ for two cycles more.
We're a bit concerned since part of the tumour is still there even after RT and chemo and it might be progressing.
PAD report says: IDH1 negative, mitosis 33/10 HPF, MIB activity 25%,
Previous tumour showed 1p19q deletions.
We have asked for a more specific analysis of the tumour and will receive results in couple of weeks (MGMT, EGFR, etc.).
Until then, our NO recommends to continue with TMZ and see what MRI shows in July.
We have plans to try Keytruda or other aPD1, what's your view? Or is there some other sytostate (CCNU, PCV) we should try before aPD1 ?
Her clinical condition is very good so we try to balance between good quality of life and try to treat this when there's better changes for that.
Supplements she currently takes:
-D3
-Selenium
-Longvida Curcum
-Probiots (L. Casei et al.)
-Leveriacetam
br and thanks,
Juha
Wednesday, 20 April 2016
Thursday, 21 January 2016
MRI revealed new tumor growth despite being on TMZ. Please help! Need some advice on what to do!
My husband is 33 y.o. and has been battling a reoccurrence since july. His tumor is oligoastrocytoma grade 4 (as of 5 years ago with first tumor biopsy). He has been taking 450-455mg of TMZ since august on the 5/23 schedule. His tumor was huge and has been shrinking since we strated TMZ, metformin, Celebrex (on and off) and a bunch of supplements. However today's MRI Revealed a new tumor growth that is being resistant to TMZ (decembers MRI did not have new spot).
Doctor suggested adding Avastin to the current TMZ dose and schedule of 5/23, or doing Avastin with CCNU, or going to Dana Farber in Boston for clinical trials. We feel a little lost! My husband read a while back that Avastin had a lot of bad side effects, so he is affraid of that (quality of life and at the end not work either), and he is affraid that once he start avastin he is not longer qualified for a lot of clinical trials. So Doctor suggested to try a clinical trial first and then go to avastin if it doesnt work.
What are your opinions? I don't know much about clinical trials and don't even know what questions I should be asking. Do you guys have any suggestions on that and questions I need to ask?
How many of you are taking Avastin? How well are you tolerating it? Can Avastin put cancer into remission? What other drugs should we use with avastin to synergize its effect on cancer?
Do you recommend clinical trials or just going with avastin and other off label meds?
I really appreciate if you give me some info or advice! Thank you very much for your time!
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