Anaplastic Astrocytoma WHO 3

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Anaplastic Astrocytoma WHO 3

by ECLJ12 on Thu Jan 08, 2015 04:47 PM

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Hello..

My husband just got results of his tumor removal and it was an AA3.  We just met with our Cancer doctor last night who advised us of what is next to come.  Radiation and Chemo start in 2 weeks and that seems to be the least of it.  What is the hardest is the life expectancy he gave us of 3-5 depending.  Has anybody else been told this?  What was the expierence.  Any information shared would be appreciated.

 

RE: Anaplastic Astrocytoma WHO 3

by Dodgerblue on Thu Jan 08, 2015 06:58 PM

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Hey,

  I'm AA3 also and today makes one year since my resection!  I had radiation and 6 months of Temador ending in October.  3-5 years is just an average and doesn't mean your husband won't beat that number.  Treatments are improving, so stay positive.  There are many long term survivors out there, you might look into a brain tumor support group in your area, so that you can both meet others who have gone through what you are now and are finding success.  The beginning is very hard, it does get easier.  Any questions shoot me a message.

Dodger

RE: Anaplastic Astrocytoma WHO 3

by ECLJ12 on Thu Jan 08, 2015 08:00 PM

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Congrats on 1 year!!  I am completly terrified for my family.. but as a Mom I feel like I have to act "ok" and practice the whole positive thing.. its hard.

I am happy to hear you have 1 year and that the number of 3-5 is just an "average"..  What happened after you were done in October?  How do they know if its in "remission?"  We didnt think to ask that at the appointment..

RE: Anaplastic Astrocytoma WHO 3

by jgcole7859 on Thu Jan 08, 2015 08:35 PM

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It's important to not focus on the statistics. Be careful with the internet as well because many of the sites are not updated. I had a grade 4 gbm which is the worst type of tumour you can have. For me, most said 6 months to a 1 year.  I just past the 2 year mark 5 days ago. Still surviving and thriving! I have met several long term survivors of 10-15 years and again that's with a grade 4 tumour. It's correct that some don't do that well but each individual has their own story and I'm trusting yours will be one of long term survival.  

RE: Anaplastic Astrocytoma WHO 3

by Dodgerblue on Thu Jan 08, 2015 09:27 PM

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For what ever reason, the medical authorities don't ever consider a brain cancer patient to be in "remission", as they use the term with other cancer survivors.  However, as I see it brain cancer patients can be in "remission".

In cancer remission, there are two main types: complete and partial. Complete remissionmeans there is no evidence of the disease, either through symptoms or medical tests. Partial remission means the tumor has shrunk or symptoms have been reduced.

Remission is sometimes misunderstood as being cured. This is not accurate, since even in remission, undetectable cancer cells may still be present in the body. The cancer can become active again.

I consider myself to be in remission at the moment, although my NO, who is a leading authority in this field would tell me I'm not, but that is OK.  We can agree to disagree on symantics.

Dodger

RE: Anaplastic Astrocytoma WHO 3

by Scampbell on Mon Jan 19, 2015 01:39 AM

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My doctor actually said, "If you put 100 people with this cancer in a room, 50 of them will be dead in 5 years." I freaked, cried, and then focused on the 50 that live longer. 4 years this week and going strong!

RE: Anaplastic Astrocytoma WHO 3

by Snowdr on Mon Jan 19, 2015 02:15 AM

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As crazy as that is, I would have preferred that over the 18 month prognosis my hubby was given 14 1/2 months ago for his GBM. These tumors are a nightmare for way too many people. A five year survival could easily be one that involves many new treatments or even a cure! Appreciate every moment and memory. None of us are guaranteed tomorrow. Hugs, Melanie

RE: Anaplastic Astrocytoma WHO 3

by HopeFaithLive on Thu Aug 13, 2015 04:17 AM

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On Jan 08, 2015 4:47 PM ECLJ12 wrote:

Hello..

My husband just got results of his tumor removal and it was an AA3.  We just met with our Cancer doctor last night who advised us of what is next to come.  Radiation and Chemo start in 2 weeks and that seems to be the least of it.  What is the hardest is the life expectancy he gave us of 3-5 depending.  Has anybody else been told this?  What was the expierence.  Any information shared would be appreciated.

 

Yes ECLJ12, my daughter has an Anaplastic Astrocytoma grade III, if you receive this please reply as I am trying to locate others with this type of tumor to talk to.  We received the same life expectancy. She is undergoing radiation and chemo right now and has 8 more radiation treatments with 6 months of chemo to go.

It is extremely hard to find others with this tumor we've been told it is rare and after many weeks of surfing the internet believe realize how few there are to find with this tumor.

Please reply if you or anyone reading has any information. We would be greatful for any knowledge we are able to obtain.

Thank you!

RE: Anaplastic Astrocytoma WHO 3

by HopeFaithLive on Sun Oct 11, 2015 03:51 AM

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On Aug 13, 2015 4:17 AM HopeFaithLive wrote:

On Jan 08, 2015 4:47 PM ECLJ12 wrote:

Hello..

My husband just got results of his tumor removal and it was an AA3.  We just met with our Cancer doctor last night who advised us of what is next to come.  Radiation and Chemo start in 2 weeks and that seems to be the least of it.  What is the hardest is the life expectancy he gave us of 3-5 depending.  Has anybody else been told this?  What was the expierence.  Any information shared would be appreciated.

 

Yes ECLJ12, my daughter has an Anaplastic Astrocytoma grade III, if you receive this please reply as I am trying to locate others with this type of tumor to talk to.  We received the same life expectancy. She is undergoing radiation and chemo right now and has 8 more radiation treatments with 6 months of chemo to go.

It is extremely hard to find others with this tumor we've been told it is rare and after many weeks of surfing the internet believe realize how few there are to find with this tumor.

Please reply if you or anyone reading has any information. We would be greatful for any knowledge we are able to obtain.

Thank you!

My daughter too has an AA3, in the right frontal temporal of her brain.  Surgery removed 80%, she had 6 weeks of chemo with radiation 1 month after the treatment she had an MRI and the tumor had substantially reduced in size and density. Her second round of Chemo started 5 weeks after radiation was done. Dr. recommended starting at 4 weeks but she asked to start 1 week later as she had a big even planned and the Dr. agreed it would be okay.

She developed shingles about 2 weeks ago, we think because she was woking too much and had some major stress from an insensitive person at an event she was running. Work is great as it allows you to think of something other then the tumor, but over doing it and too much stress is not good.  I worry a little that her set back with shingles and having to stop Chemo will show in her next MRI at the end of the month.

Nonetheless, my daughter is an amazingly positive person so she is not letting this tumor define who she is.  If your daughter can stay positive it really does make a difference and as little of stress as possible best.

There is a good book another person on this board recommended "Serviving terminal cancer"  it's an easy read and has some really good information from a 20 year survivor.

My prayers go out to you and your daughter.

RE: Anaplastic Astrocytoma WHO 3

by veracityW on Wed Oct 14, 2015 09:30 PM

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my husband (who is 68) has AA grade 3. diagnosed in june after a grand-mal seizure in early may. he had two tumors right on his speech center, which has caused aphasia, and last month the MRI showed another small tumor in the frontal lobe, all on the left side. he had a full six weeks of radiation-plus-Temodar, and is now into Temodar, 5 days on, 23 off. he has had one round of the latter, then the oncologist told us to wait until the results of the latest MRI come in before starting another round of Temodar. he's a week late and counting; i don't know what this delay will do to him for good or ill.

the worst part is the aphasia: he understands everything but can't find the words when he wants to speak. also, i have noticed a couple of lapses in judgment (a couple of fender-benders which he forgot to tell me about, which resulted in my taking the car keys away; leaving the stove burners on; buying stuff at the store which we already had, and forgetting stuff we needed; just little stuff, but i'm keeping an eye on him).

his tumors are inoperable, at least the original ones are. the radiation seems to have done away with them, but the area around where they were is really messy--the onc is not sure whether that's from the disease or from the radiation. in either case, his speech center is out of commission. don't know about the frontal one. i am taking care of him and everything that he used to do, like the bills. it is NOT easy, and i have to remember that the situation is not under my control and not get bent out of shape about that. that's the hardest part. we haven't been given a prognosis of how long he can expect to live, so i'm just going to assume ten years, hopefully with some relief of the aphasia. that may be an impossible dream, but it's at least something to aim for. 

Decadron seems to help somewhat--when he goes without it he has withdrawal symptoms. Keppra keeps the seizures down. he's not in any pain, his appetite is good, and he is able to do things like making yogurt once a week and pickles occcasionally. he loves to grocery-shop, even though he can't write out a legible shopping list. i can send him out to do a bit of shopping without worrying about it, but he gets tired and comes home on the bus. he's fatigued and low-energy a lot of the time. but he's still able to get up and make himself a sammich a couple of times a day.  he used to do all the cooking, and now i am responsible for dinner. i HATE cooking! :P 

so life goes on...

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