diffuse astrocytoma stage 2 IDH wild type

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diffuse astrocytoma stage 2 IDH wild type

by Keithga on Sat Feb 03, 2018 10:50 PM

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Hi, I am a 55 year old male just diagnosed with diffuse astrocytoma stage 2 IDH wild type after experiencing mild headaches and nausea. The tumor is inoperable due to its deep location (Basal Ganglia).

My neurosurgeon advises that the disease will progress to high grade after a period of time and that treatment is required, either radiotherapy or chemo or both. I will be referred to a neuro oncologist.

Has anyone had experience with this type of tumor? If so what treatment was undertaken and how effective was it?

RE: diffuse astrocytoma stage 2 IDH wild type

by crob1024 on Fri Feb 23, 2018 06:05 PM

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Hi Keithga:  I do not check into this site too often these days, but when I do I look for posts by people with astrocytomas stage 2 as there is much less info out there for such patients.

My husband was diagnosed with Astrocytoma Stage 2 in his right frontal lobe when he was 54 (so similar age to you).  Since it too was diffuse, doctors watched it for 3 years until it started to enhance on MRIs.  He was able to have surgery with 90% removed due to tumor being close to optic nerve.  After surgery he had 6 weeks of targeted radiation which was effective and then took Temador...standard treatment.  He did well for several years...lead a relatively normal life.  I will say that the radiation does lead to its own treatment effects which can mean you are not as sharp as you used to be depending on where the tumor is and what functions that part of the brain controlls.  

Many people live a long time before a Stage 2 comes back, but the likelihood that it does come back as a Stage 3 or 4 is pretty high.  For my husband it came back 7 years after surgery and radiation.  He then tried other chemo therapies which didn't really make much difference other than to hinder quality of life.  He died at age 66, nine years ago...and 12 years after diagnosis.

So I would recommend radiation and temador...and live your life to the fullest.  Who knows you may even be one of the lucky ones who doesn't experience a more aggressive tumor down the road following treatment.

I wish there was more research on Astrocytomas Stage 2 that could lead to stopping progression right at that level.

If you have any questions, do not hesitate to ask.  Best of luck to you. 

RE: diffuse astrocytoma stage 2 IDH wild type

by jeanssister on Sat Feb 24, 2018 11:17 PM

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Hi Keith, My sister was diagnosed with a grade 2 astrocytoma almost 14 years ago. It, too, was inoperable. They did a full course of radiation, but no chemo. 

She was 49 at the time. 2 months ago, she was diagnosed with a grade 4 glioblastoma that had grown around the original tumor scar. The original radiation bought her 14 years. She is now doing only 3.5 weeks of radiation (2/3 of a full course) due to limits re: how much radiation a brain can handle. She's also doing chemo. 

I highly advise you to contact Duke University's Preston Robert Tisch Brain center:  https://tischbraintumorcenter.duke.edu/for-patients

Technology has improved since 14 years ago, and there may be an expert there who can resect the tumor. Always worth seeking a second opinion. The original assessment can be done long distance, with you sending MRIs. 

Also, just because my sister's tumor came back doesn't mean the tumor you describe will. My sister is not exactly healthy. Look into nutrition recommendations (some suggest a keto diet) and stick with them as best you can. Take care of the whole body, not just the tumor. I wish you the very best with this. 

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithga on Sun Feb 25, 2018 03:57 AM

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Thanks so much for your replies and advice crob1024 and jeanssister.

Very heartening to hear of the longevity achieved by your husband and sister (still going!).

I will be very happy (and my family) if I can achieve the same, although as i have a wild type genetic profile rather than a mutant profile, I am aware that my prognosis is not as favourable, as the wild type profile is less responsive to treatment.

I have an MRI in a few days and then an appointment with the oncologist on Mar 5th. 

I may seek a second opinion on treatment however as I live in Australia I am unable to seek a second opinion from the Duke Uni Brain Centre.

I have noted several posts on this forum and others that say that diet can improve longevity however there seem to be so many different opinions on the best diet, eg.vegete rian, keto, etc.

Thanks again.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Mon Mar 12, 2018 12:50 PM

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My husband (56) was diagnosed with the same (diffuse astrocytoma stage 2 IDH wildtype) a few weeks ago after a seizure.  The tumor is also inoperable due to it's location.  He is now on week 4 of a 6 week targeted radiation and chemotherapy (Temodar) plan which he is tolerating pretty well.  I'm glad to hear the stories of others having many years before their tumors returned.  We are hopeful, but I know that the IDH is a concern.  Apparently it causes the tumor to behave more like a GBM and is less receptive to Temodar.  My sister's husband had GBM and just recently passed away - but he survived for 5 years with it (one of the 2%) and the drug that kept him alive was Avastin, because he didn't respond to the Chemo.  I don't know if that is an option for you or for my husband, but am going to ask our oncologist.  I don't think they currently prescribe it for anything but GBM.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Mon Mar 12, 2018 12:51 PM

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My husband (56) was diagnosed with the same (diffuse astrocytoma stage 2 IDH wildtype) a few weeks ago after a seizure.  The tumor is also inoperable due to it's location.  He is now on week 4 of a 6 week targeted radiation and chemotherapy (Temodar) plan which he is tolerating pretty well.  I'm glad to hear the stories of others having many years before their tumors returned.  We are hopeful, but I know that the IDH is a concern.  Apparently it causes the tumor to behave more like a GBM and is less receptive to Temodar.  My sister's husband had GBM and just recently passed away - but he survived for 5 years with it (one of the 2%) and the drug that kept him alive was Avastin, because he didn't respond to the Chemo.  I don't know if that is an option for you or for my husband, but am going to ask our oncologist.  I don't think they currently prescribe it for anything but GBM.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Thu Mar 15, 2018 10:16 AM

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Thanks for your reply KB - Austin.

I also will be undergoing radiation for 6 weeks (no chemotherapy at this stage), in a few weeks time after we shift house.

There was no mention of Avastin when I met with the oncologist, so will be interested to know what your husband's oncologist advises.

Wishing your husband all the best with his treatment.

note - had to change my user name from Keithga to Keithge due to some log on problems.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Fri Mar 16, 2018 02:18 AM

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Wishing you the best as well.

I am doing lots of research while my husband is busy being positive and doing well with his treatments.  He enjoys every day and trusts that all will be well.  I wish I could be him, but do believe that blessings can be found in every situation ... you just need to look for them.  Since you seem curious here are a few articles I have uncovered.

https://www.ncbi.nlm.nih.gov/pubmed/28575485

http://www.cancernetwork.com/oncology-journal/newer-strategi

IDH wildtype stage 2 astrocytomas seem to be a mystery.  The category itself even appears to be under question.  Make sure you do genetic testing to find out what other biological markers you have.   And you may want to question whether or not to have chemo.  The recommendation seems to be to go ahead and do it.  Won't change the overall outcome, but it could delay tumor recurrence, and buy you some time.  They are figuring new stuff out every day - I hope they figure more of it out soon.

Prayers to you and your loved ones.  Please keep us posted on your progress.

KB

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Mon Mar 26, 2018 08:07 PM

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The entire IDH wildtype or mutated is of great interest to specialists and researchers.  Particularly for diffuse stage 2 astrocytomas.  Consider this - anyone without a brain tumour is IDH I and II wildtype.  One would have to assume that wildtype offers a survival advantage.  True, the tumor is not as responsive to medication but perhaps that's because it's more indolent.  Dr. Hugh Duffau - along with many others in the field - is a strong proponent of tumour volume as a more important measurement for OS.  All I know is that the knowledge base has changed dramatically over the past 5 years.

Another thing - if a diffuse astrocytoma will always grow into a GBM, why do some people's progress very quickly and others virtually not at all?  Maybe IDH I and II plays a part in the answer.

I think all we can do is remain positive, remain informed and enjoy our time.  Time is precious no matter what the prognosis.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Thu Apr 05, 2018 01:22 PM

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Thanks for your post suz222, you made some interesting points, hoping you are correct that wildtype might not be a key indicator of OS.

I was due to start radiation next week however have decided to put it on hold whilst i seek a second opinion from renowned Australian neurosurgeon Charlie Teo regarding my inoperable status.

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