Astrocytomas Grade 3

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Astrocytomas Grade 3

by bizzerbee on Fri May 25, 2018 05:12 PM

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Hello everyone,

My husband has just been diagnosed with a grade 3 AA. It was located in his right front temporal lobe. He has a ful resection and the MRI shows a 100% gross total removal. He is about to begin 6 weeks of Radiation and Temodar. He has the IDH1 mutation. I am not sure why I am writing here. I just feel really lost. So much of prognosis online is dismal. I have a hard time believing the 5-7 year prognosis since it seems like a lot of the treatments these days are new and I would think that those numbers stem from data gathered on patients who had different surgery tools/methods and different treatment options. My husband has done really well since his surgery but it has left him speaking a little monotone. Processing new information or questions by strangers seem to be difficult. This makes sense due to the location of the tumor. Wondering if these effects will get better? Will radiation make them worse? What can we do to have more hope and less fear? ANY POSITIVE STORIES. Please

RE: Astrocytomas Grade 3

by Mack1994 on Sun May 27, 2018 03:32 PM

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On May 25, 2018 5:12 PM bizzerbee wrote:

Hello everyone,

My husband has just been diagnosed with a grade 3 AA. It was located in his right front temporal lobe. He has a ful resection and the MRI shows a 100% gross total removal. He is about to begin 6 weeks of Radiation and Temodar. He has the IDH1 mutation. I am not sure why I am writing here. I just feel really lost. So much of prognosis online is dismal. I have a hard time believing the 5-7 year prognosis since it seems like a lot of the treatments these days are new and I would think that those numbers stem from data gathered on patients who had different surgery tools/methods and different treatment options. My husband has done really well since his surgery but it has left him speaking a little monotone. Processing new information or questions by strangers seem to be difficult. This makes sense due to the location of the tumor. Wondering if these effects will get better? Will radiation make them worse? What can we do to have more hope and less fear? ANY POSITIVE STORIES. Please

Hello bizzerbee, I was diagnosed in 1994 with oligodenroglioma grade two, I've undergone three resections since, the most recent in February of 2017.

After my first resection I was progression free until 2002, had another resection(total) and was prescribed temodar, cycled five days every twenty-two days for 12 cycles, my neuro-oncologist recommeded I fore go radiation treatment as I wanted to continue working, at the time radiation treatment was whole bran radiation and would have resulted in radio-necrosis. With the temodar alone I was progression free for 10 years. 

In December of 2012 I had a seizure, MRI showed progression within the same area of previous progression, I had another total resection, Iopted out of radiation and chemo as I wanted to continue working and would not have been able to do so if I was under radiation and chemo, would have been too sick.

In December 2016 I had another seizure, MRI showed progression, again within the same area as previous progression, under went total resection again in February 2017,this being my most recent surgery, this time I found my recovery and recuperation much more difficult then previous and was out of work for ten weeks, it being pointed out by my Doc's as due to the fact that the effects are accumulative and I was/ am relatively much older at 62, recovery from brain surgery can range from 6 to 12 weeks, the brain is very slow to heal, I, like your husband had difficulty processing new info and my affect was quite flat and I spent alot of time sleeping, it was explained to me that the brain slows down and sleeping is the best way for the brain to heal.

I retired in June of 2017, and began radiation treatment in July for 33 total treatments, The radiation treatments were Multiple angle radiation treatments in which the radiation beam can be narrowly focused down to an area of just a few millimeters, my radiation oncologist has told me he does not think I will experience any radio necrosis to adjacent healthy tissue.

From the radiation I experienced fatigue, and again I slept alot, I finshed radiation in August and then started chemo, consisting of lomustine, procarbazine and vincristine by infusion, for 6 cycles, each cycle being 42 days length, I am now just 1 week away from completion, and I am so glad to be finishing this protocol, it has been tough, I am sick and tired of being sick and tired.

My first neuro surgeon told me along with my neuro-oncologist not to look at this as terminal but to look at it for the long term, a chronic desease, that may or may not result in my death, so keep youself as healthy as possible so I don't die from something else.

Your husband and you are in the begining of all of this, but you can be optimistic and hopeful going forward, keep posting to this board as there is a great deal of information and very knowledgable people here.

I'm sorry, i did not include that when I had my last resection the pathology showed that the tumor had changed and was now an anaplastic oligodendroglioma grade three, and that treatment with the protocol I,m finishing the median progression free time is ten years, now that I'm looking forward to!!

I wish you the best

Mack1994

RE: Astrocytomas Grade 3

by bizzerbee on Sun May 27, 2018 06:59 PM

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Thank you so much for taking the time to respond to me. I spend hours online but t is hard to find things specific to astrocytomas since GBMs seem to be so much more prevelas. It is amazing that you have undergone so much and yet you are here to speak your story. I am really struggling. I look at our little boy and my heart breaks. Will he know his dad? I want to be hopeful since we are starting our journey with my husband being so healthy and a full resection. Has your whole world revolved around your tumor? I wonder if it will always be the center of my thoughts or will I eventually be able to spend some time thinking about other things? Hard to enjoy the here and now when my mind is always on the tomorrows.

RE: Astrocytomas Grade 3

by Mack1994 on Sun May 27, 2018 08:37 PM

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On May 27, 2018 6:59 PM bizzerbee wrote:

Thank you so much for taking the time to respond to me. I spend hours online but t is hard to find things specific to astrocytomas since GBMs seem to be so much more prevelas. It is amazing that you have undergone so much and yet you are here to speak your story. I am really struggling. I look at our little boy and my heart breaks. Will he know his dad? I want to be hopeful since we are starting our journey with my husband being so healthy and a full resection. Has your whole world revolved around your tumor? I wonder if it will always be the center of my thoughts or will I eventually be able to spend some time thinking about other things? Hard to enjoy the here and now when my mind is always on the tomorrows.

I and my wife, like you, were completly overwhelmed when I was first diagnosed, our first son was 10mos old and my wife was pregnant with our second son.They are young men now and I beleive so it will be for you and your husband.

I was employed as a Registered Nurse, working in a major medical center I had access to research and data, what I was doing was not only educating myself, but also looking for hope, much of what I read was dismal, however I was advised by my neuro-onclogist at the time not to get hung up on statistics,as advancements and more is learned every day in the treatment of these tumors, he told me at the time he expected I would grow old enough to be a grand father, provided I took care of myself, and no unforeseen tradgedy was to befall me.

In time as you and your husband go through this journey you and he will reach a comfort zone, knowing what to expect from treatment and the diagnostics, (i WOULD'NT CARE AT ALL IF I NEVER SEE THE INSIDE OF AN MRI MACHINE AGAIN OR HAVE NO MORE NEEDLE STICKS!!)

My wife and I got on with our lives as best we could, and raising two kids kept us greatly occupied, so much so that I began not really thinking about it at all, until I had to have another MRI or test, then it would enter my mind and I would experience some anxiety and nerves.

Certainly when I had a seizure I was thinking this thing has become a massive monster in my head and now I'm a dead man, but let's find out and move forward, and well here we still are, married for thirty three years and looking forward to enjoying our retirement

Please keep in touch. My best to you and your husband.

RE: Astrocytomas Grade 3

by bizzerbee on Sun May 27, 2018 10:18 PM

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Thank you so much. Your words made me smile and brought me comfort. I cannot fully express how much I needed both. Thank you for taking the tune to write. I will undoubtedly read abdcre-read your words again in the days/months/years to come.

RE: Astrocytomas Grade 3

by Borov84 on Tue May 29, 2018 05:42 PM

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Your husbands situation sounds very similar to mine... grade 3 AA, IDH mutant in my right frontal lobe. Was diagnosed almost a year ago, was perfectly fine until I had a seizure out of the blue. Fortunately I also had a full resection, which off the bat drastically increases survival. I followed up with 6 weeks of radiation and I’m currently in the middle of my 8th round of chemo. I’m only 33 and my daughter was 8 months old at the time of diagnosis, so I completely understand your fears. The goods news is that a lot of the statistics are on your side. Like you said, it’s hard to find information on an AA3 specifically because they’re so rare. Many of the numbers you’ll see have GBMs mixed in which skews things a lot. I personally think of this as a lifelong illness, not a terminal one. I have no intentions of dying from anything other than old age. Best of luck with the radiation. I didn’t have any side effects during treatment, but everyone is different. I’ve been starting to have some cognitive issues recently, but it’s better than the alternative. Hopefully they’ll improve once I’ve finished chemo, if not I’ll just look forward to early retirement.

RE: Astrocytomas Grade 3

by bizzerbee on Tue May 29, 2018 06:08 PM

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Thank you so much for responding to me. I very much enjoy your outlook that this is a life long illness vs. terminal. Can I ask what kind of cognitive issues you are dealing with? Are you working? What kind of prognosis did your doctors tell you? 

Thank you for taking the time to respond. I really appreciate it. It is comforting finding others dealing with this strange/terrible disease. Thank you

RE: Astrocytomas Grade 3

by Gerard6 on Wed May 30, 2018 01:13 AM

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Hi my story is very similar.  In 2001 I was diagnosed with a Gr 3 Astrocytoma in the right temperal lobe.  It was fully resected and had 6 weeks of radiation.  No further complications at the time.  My Brain Surgeon said Id be lucky to see 5 years, but to be positive.  I am by nature a very positive person but they say it does help.  Seventeen years on Ive now developed radiation necrosses which afffects my balance, memory etc.  Really a small price for what could have been.  Dont listen to doctors about stastictics everyone is different - be strong, confident and positive and you will surely beat this monster.   You are in prayers,  Ger

RE: Astrocytomas Grade 3

by bizzerbee on Wed May 30, 2018 02:18 PM

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I thought I had written back to you but I do not see my response. Thank you so much for reaching out to me. This is such a scary disease with so little concrete information to go on. I have been doing as much reading as I can and it really does bring me strength.. power in knowledge I guess. Did you go back to working full time? My husband is a teacher and I know he is afraid that he wont be able to do that anymore. I really want him to be able to continue to work because I strongly believe sense of purpose aids in the fight for life. It brings my heart joy to think of you getting to see your boys grow. I beg this to be for my husband. 

RE: Astrocytomas Grade 3

by bizzerbee on Wed May 30, 2018 02:21 PM

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On May 30, 2018 1:13 AM Gerard6 wrote:

Hi my story is very similar.  In 2001 I was diagnosed with a Gr 3 Astrocytoma in the right temperal lobe.  It was fully resected and had 6 weeks of radiation.  No further complications at the time.  My Brain Surgeon said Id be lucky to see 5 years, but to be positive.  I am by nature a very positive person but they say it does help.  Seventeen years on Ive now developed radiation necrosses which afffects my balance, memory etc.  Really a small price for what could have been.  Dont listen to doctors about stastictics everyone is different - be strong, confident and positive and you will surely beat this monster.   You are in prayers,  Ger

Did you also recieve chemo or just radiation? Can I ask why your docotor thought just 5 years even after a full resection? Did you have the IDH1 mutation? I am sorry for all the questions. I have been reading so much long term survivor stories and I am trying to find the commonalities even though for the most part it does seem largly random who makes it and who doesn't. Your 17 years does give me hope. Thank you for reaching out to touch my heart. Your kindess has been felt. 

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