diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Wed Feb 13, 2019 09:14 AM

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Hi HK,

Always sorry to hear of someone newly diagnosed, hopefully this forum helps in some way for you.

I will let someone more knowledgeable than me explain the triple negative - I chose not to seek too much information on it.

With the radiation I was fine for most of it - I had 5 weeks off work, the last 3 weeks of treatment plus the 2 weeks after - I did get fatigued near the end of treatment and definately required the two weeks off work after treatment to recover.

Diet and drinking - my oncologists have not mentioned it. I still have a beer and red wine on a friday and saturday night, apart from Chemo week when I have no desire to drink.

I attend a brain cancer support group, my wife chooses to see a counsellor instead, which helps me. I find the sharing of information and experiences helps to ease the sense of isolation I feel from time to time.

Wishing you all the best.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Wed Feb 13, 2019 04:00 PM

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Hi HK - sorry to hear about your husband.  Mike and I still have wine with dinner, and he has the occasional beer.  Our doctor said to be careful with alcohol so we cut out hard liquor, which does impact him more than it used to.  The genetic testing may or may not be covered by your insurance.  Some day it will be used to direct personalized care, and to identify possible new treatments. Right now it will help give clues as to what treatments will/will not be effective. They are learning so much every day.   Our hope is that they figure something out while we are in the "watch and wait" phase of this thing.  The radiation was the hardest part of the treatment for Mike.  The effects kicked in about week 4 and lasted for about 6 weeks.  I doubt that he could have worked then because he was so tired.  The chemo was not as difficult.  He breezed through it, but we only did 5 weeks.  There is an online site for cancer care takers - but I only stayed on it a few weeks.  I've been talking to other women who have been through this (including my sister, a neighbor, and a friend's mother) for advice and support which has been helpful and hope to start blogging about it.   Wishing you love and hope and comfort as you start down this journey.  Right now, our days feel almost normal.   KB

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Sat Feb 16, 2019 02:53 PM

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Thanks for the reply friends! I hope you are all feeling well! Last Thursday Kevin had a consult at the University of Cincinnati to explore doing proton delivered radiation instead of photon. I’m curious if anyone here did that? We are waiting to see if our insurance covers it. If they deny approval the center will challenge them with appeal. I’m gathering published data that supports this modality for low grade Astrocytoma as a way to avoid ancillary radiation to the adjacent healthy brain tissue. Preservation of healthy brain and limiting adverse effects is our goal. I hope we don’t get into a complicated appeal process with Anthem since that will delay treatment starting. Kevin is still doing well and his Neuro exam was normal. No break through seizures or auras. He is antsy to return to driving. Did anyone here have seizures resulting in driving restrictions? The clinician in Indiana is saying 6 months seizure free period is recommended but in Ohio they say 3 months. It varies from state to state but our Indiana law doesn’t even define a seizure free period at all. It has been almost 2 months since his isolated seizure. I’m also looking into having Kevin do a Keto/atkins modified diet. The center in Ohio has a clinical trial that is studying this but I think in higher grade glioma like GBM so he would not qualifiy. Kind regards to you all! Heather

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Wed Feb 20, 2019 09:19 PM

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Hi Heather,

I am not much help with your two questions, I had targeted radiation but could not tell you if it was photon or proton.

I do not suffer from seizures so I am able to drive.

Regards, Keith.

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Sun Feb 24, 2019 04:03 PM

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Thanks Keith and I hope you are doing great these days. Our insurance approved the proton delivered radiation so we are going for it. The effects on the tumor should be no different than it would be with photon delivered but we hope maybe less effects to his normal brain tissue this way. Last week he did his simulation and planning so I expect he will start treatment in about 2 weeks. He is still feeling well and has been exercising more. His Neuro Oncologist is the PI of a trial testing adding the modified Atkins diet to standard of care treatment of patients with late stage glioma. She is prescribing it off protocol. I am going to try and do the diet with him. The hypothesis is the state of Ketosis makes the tumor cells more sensitive to radiation. The treatments are going to be in Ohio so we will live there Monday-Friday and come home to Indiana on weekends.

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Sun Feb 24, 2019 07:30 PM

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Good luck all treatments are a bonus x

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Mon Feb 25, 2019 12:44 AM

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Buster, how are you doing?

Heather - TX has a 3 month rule on seizures.  Mike has only had one (small) seizure since his treatment and it was because he forgot to take Keppra one morning.  It was not like the first one (a grand mal) - he just had some pretty crazy speech issues, and could not form words ... one of the locations of his tumor is in the speech center of his brain.  So we are careful, but he still drives.  :-)

RE: diffuse astrocytoma stage 2 IDH wild type

by LeeMcdougal on Mon Feb 25, 2019 03:59 PM

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Hi there I am a 44 year old diagnosed with a Grade2 Astrocytoma in 2010.  It is located in my left Frontal lobe. I had a seizure in the middle of the night which I dont remember at all!! I had surgery two weeks later where the neurosurgeon removed a small section.

As it was Grade 2 cells, we adopted a watch and wait policy. Apparently this kind of tumour is slow to grow. I did however see different doctors at the time for their opinions. 

Over time i have definitely felt that my memory is impaired and often mix my words up or find it difficult to express my self sometimes. Another thing that has happened is Im now not very social and prefer quiet places or smaller groups of people. I get stressed out easilly and that never used to happen. But otherwise life has been great.

Now 9years later I have a consistent headache which just wont go away. Since seeing a new Neurosurgeon as my neuro has retired, he says we must do a biopsy and then make a decision from there. There definitley is an increase in size (7.5 by 4cm)

Another opinion was to be more aggressive and to rather have surgery and remove as much as possible. Apparently it reaches into my speech area a bit so they will have to work with another expert and wake me up during surgery.  Im freaked out by that I must say. But I can do it.

Now just awaiting a third opinion and will decide what to do.

I havent had any chemo or radiation at all, just surgery in 2010.

Definitely have to live each day to the full and love your friends and family. yes to staying positive and to reach out to God. God Bless

 

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Feb 28, 2019 07:19 PM

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After bright areas seen on scan done 3 lots tezolomide , poor results what’s next pls all?

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Thu Feb 28, 2019 09:57 PM

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I'm so sorry.  You have given us all much hope with the long time you've been before recurrance.  My brother-in-law was diagnosed with GBM and he survived over 5 years.  He did not respond to temozolomide when his cancer returned - but he did respond to Avastin (bevacizumab), and he had a second surgery for partial removal of the tumor growth.   

Sending love and prayers,

KB  

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