Stage 3 Astrocytoma

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Stage 3 Astrocytoma

by ScottS on Tue Jan 11, 2011 07:46 PM

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Hello All,

I'm very new to this and am seeking information. I live in Canada and my wife, 36 years of age has just been told she has stage 3 astrocytoma. After 2 major seizures and a biopsy they came to this, they want to do radiation and chemotherapy. 6 weeks staright of it and home on the weekends. The tumor is 7 cm's below the top of her head and is in operable due to it's location. We have 2 girls, 11 and 6 and i'm just looking for input and help on what is best to do and steps to take. I love my wife dearly and wish I could trade places.

Please forward on any information that could help us,

Thanks

RE: Stage 3 Astrocytoma

by cadalybre on Tue Jan 11, 2011 09:35 PM

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Hi Scott,

Welcome to the CC family, I'm very sorry you have to be here, but this is the right place to be for support and information.  You can read my profile, my hubby was diagnosed AA grade 3 nine years ago (when he was 29), still here and fighting!  What chemo will she be on?  My husband (Jeff) started out with Temodar, chemo has changed so much over the years, he has been on so many.  He is currently on Avastin (not a chemo) and Carboplatin (chemo) and has been holding pretty stable for the past year and a half.  I hope the best for you, let us know what questions you have.

With much hope,

Jenny

RE: Stage 3 Astrocytoma

by dukefan on Tue Jan 11, 2011 10:42 PM

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Glad to hear from you but sorry you are here on our CC site.  You will find this is the place for all types of treatments.  I don't know where your wife will be getting here treatment but sounds as if she will be away during the week.  We are fortunate to live near the Preston Robert Tisch Brain Tumor Center at Duke Medical Center in Durham, NC.  We have wonderful drs and their staff treat us like family.  My husband's GBI is a grade IV and also inoperable because of the location.  Been in this 10/2009 and he's still kicking after many different treatments and just one really down time that lasted 2 months.  THe radiation with Temodar is what he started with also.  This decreased the tumor alot.   He too had this treatment for 6 weeks, then he went on Temodar only for his chemo treatment.  Since this is oral it was wonderful.  Of course never doubt there aren't alot of other meds he takes because of the tumor, chemo, he's diabetiic and a cardiac patient.  I am so sorry you and your wife are going thru this, so young and 2 precious children.  Mine are grown and I have grandchildren older than your children (not that old really, young gran).  I will pray for you and your family and hope you know to live each day to the fullest, NO ONE knows what the future holds, including drs.  OUrs are so positive and I love them for this. 

I am with you on wishing I could change places with my husband, I hate watching him go thru this and feel he has so much more to contribute to others.  He has always been a "servant" helping everyone in anyway he could.  Have a blessed day.

RE: Stage 3 Astrocytoma

by Cvillelarry on Tue Jan 18, 2011 12:36 AM

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I am now 62 years old.  4 and 1/2 years I was diagnosed with non-operable AA. I did 4 weeks of radiation with Temodar and then 6 months of high dose Temodar.  My 3 month MRIs have shown no grow.  I'm living a normal life with no deficits.  My MRI is next week.

Hope this helps.

Larry

RE: Stage 3 Astrocytoma

by dalles11 on Tue Jan 18, 2011 01:42 AM

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Ignore the statistics and keep the faith.   Age is on her side.  It is hard to find a lot of info on Grade III tumors it seems.  I care for my mother, who was diagnosed at age 62 with an inoperable Gr. III oligoastrocytoma.  Radiation followed by temador, then three years on thalidomide.  Currently on Keppra (for seizures), Pentoxifylline (for radiation dementia), aspirin (she had a stroke) and vitamins.  She was doing REALLY well up until the stroke in July.  We are on a slow steady downward trend, but she is also 67 years old.  Glad you found this site.  Lots of good info and sound advice. 

RE: Stage 3 Astrocytoma

by RLHindson on Thu Sep 08, 2011 04:18 AM

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How is your wife getting on Scott?

I didn't have seizures or a biopsy.  when my AA was discovered they though it was a cyst, then a low grade so it took 2 months to get to surgery when they discovered the pathology.  Is your wife's tumor REALLY inoperable.  there's inoperable and there's inoperable.  There's a surgeon here in Australia named Charlie Teo who has huge success tackling so called 'inoperable' tumors.  There's gotta be more Charlies out there.  You need at least a dozen people to tell you it's inoperable before you believe it to be inoperable! 

My tumor was easy and completely resected.  I am led to believe the best chance of survival comes from surgery, then radiation, and finally from chemo.  Getting a skilled surgeon to remove as much of the tumor as possible is what I believe is the key.

What treatment has your wife had?  Has she had radiation?

My oldest child turns 6 this week - I understand how hard this diagnosis is for your family.

Best wishes.

 

Renee

RE: Stage 3 Astrocytoma

by ScottS on Thu Sep 08, 2011 12:40 PM

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On Sep 08, 2011 4:18 AM RLHindson wrote:

How is your wife getting on Scott?

I didn't have seizures or a biopsy.  when my AA was discovered they though it was a cyst, then a low grade so it took 2 months to get to surgery when they discovered the pathology.  Is your wife's tumor REALLY inoperable.  there's inoperable and there's inoperable.  There's a surgeon here in Australia named Charlie Teo who has huge success tackling so called 'inoperable' tumors.  There's gotta be more Charlies out there.  You need at least a dozen people to tell you it's inoperable before you believe it to be inoperable! 

My tumor was easy and completely resected.  I am led to believe the best chance of survival comes from surgery, then radiation, and finally from chemo.  Getting a skilled surgeon to remove as much of the tumor as possible is what I believe is the key.

What treatment has your wife had?  Has she had radiation?

My oldest child turns 6 this week - I understand how hard this diagnosis is for your family.

Best wishes.

 

Renee

Hi Renee and the rest of the CC Family,

Andrea is doing well. Still on Chemo (Temodal) each month. She does it for 1 week and off for 4. We are looking into other treatments and second opinions as well. We have had 3 people tell us it's inoperable due to the tumor being infused or ingrown if you will. They say it's not a growth but just a mass in her brain and if they were to remove it she would lose her speech, motor skills and other things so they say it's best not to but we are waiting for these other opinions to come in. I have a Life Insurance policy that has "Best Doctors" attached to it. They do research and give you the best Dr's out there for your illness so that is a route we are taking as well. Overall she is doing great! No sickness just tired when she is taking Chemo.

I will do my best to keep you updated, Thanks for the best wishes and inquiry.

Scott

RE: Stage 3 Astrocytoma

by monab on Thu Nov 01, 2012 06:12 PM

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I too am new to this site. My husband who is 63 was diagnosed a year ago August by good friends of ours at the Medical College of Georgia and they subsequently sent us to Emory in Atlanta (where we live) for treatment. Jerry's tumor is totally inoperable. It is so deep in the brain that doing the biopsy caused him to lose partial mobility in both his right arm and leg. His mental ability is extremely challenged by this tumor which is the size of a small/medium egg and is malignent. We thought that he had a stroke (he sold medical equipment to neurologists for 30 years) and when we went to check on that they found the tumor. A good friend who is a neurologial surgeon has told us it is inoperable, so did the stroke team of 5 physicians and everyone at Emory has said the same thing. Sure they can go in, but the damage would be extreme. We started with a clinical trial for temodar where they did daily doses of radition for 8 weeks and then he started the temodar with mega doses for 5 days every 28 days and then an MRI was done every 2-3 months. Well 9 months into this 12 month trial a second tumor showed up so they have removed him from the trial and we are now doing temodar every day at a dose of 120 mgs. and Avastin treatments every 14 days (this is an infusion for those not familiar with the drug). Avastin is an attempt to cut off the blood supply to tumors. We had two treatments and an MRI and it had started to work on the new tumor but had not touched the large one. We are now about 3 months into this new treatment and thus far he is "stable" - no new growth but no lessening of the tumors either since the first MRI. They have now moved to 8 Avastin treatments and then an MRI and consult since he is stable. This will continue for 12 months.

I must say that when I read about young people with this my heart goes out to you. We have been married for over 40 years and have 4 wonderful grandkids (12,11,9.6) so he has watched out kids grow and has enjoyed his grandkids until recently. We have nothing to complain about - we have had a full life.

Unfortunately he took a fall down the stairs in our house the other day while I was at work and has seems to have exacerbated the damage to his right side and can barely use his leg and arm now. Waiting to hear if we need to take him to Emory or if they just want to wait until we see them in two weeks. I find that any stress exacerbates his symptoms.

Sorry to have gotten wordy but its nice to be able to commmunicate with people who understand what this is and what it does.

I wish you well with our wife and I do believe that age is on her side - more and more is being done with this group of tumors than every before - more research and more drugs coming on board - keep the faith!

i work on computers all day long at work and when I get home I rarely get on a computer unless I am paying bills but I will make an effort to keep up with the people I have read about on this message board. I will you all well in your battle against this desease.

RE: Stage 3 Astrocytoma

by rpatrick on Fri Nov 02, 2012 11:14 PM

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My brother was dx with Stage III pontine glioma at the end of September of this year.  His symptoms include: deafness/blindness on left side, muscle weakness due to decadron, blurry vision, and slurred speech.  He is currently on radiation and will start Temodar next week.  He is 39 years old.  They were unable to due a biopsy due to location, and so his tumor is "inoperable" as well.  It is very difficult to watch him go through this, but I feel that a positive attitude works wonders, and prayer helps.  I will keep all of you in mine.

RE: Stage 3 Astrocytoma

by ourVictory on Sat Nov 03, 2012 01:54 AM

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I agree attitude, prayers, family, friends are awesome to us who unfortunately like me respond with anger and frustration. Some of my doctors say its' because our medication and I will add fear, ignorance... and so many psycological ideas that I don't have the time to stop as much as I would like to work on them... It hurts me to hurt nice people around me...

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