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anaplastic astrocytoma grade 3...

mer42
Posts: 2
Joined: Jan 2004

I would like to talk with anyone who has survived this type of inoperable brain tumor. Interested in type of treatment, diet, herb supplements. Research Studies.

Lavendar
Posts: 3
Joined: Mar 2003

My daughter, who is college age, has an inoperable anaplastic astrocytoma grade 3. She was diagnosed 9/7/01 and went through chemo (Temodar)for a year and radiation treatments for 6 weeks. There has been no new growth and she has been told that she could go decades without it starting to grow again. She always ate a semi healthy diet - no supplements.

ajd1234
Posts: 3
Joined: Apr 2009

Hi, my niece has AA, the doctors are not giving us a lot of time.
She was diagnosed 4 months ago , had radiation done, chemo. Please help if anyone has a child with non-operatable AA grade 3.
May G-d help all who are suffering with any illness. thank you, angela

‹ Childhood Medullablastoma Is No Treatment an option? ›

Priash
Posts: 22
Joined: Apr 2009

Hello Lavendar:

Please let us know how is your daughter doing?

God Bless
Priash

munroe
Posts: 4
Joined: Nov 2008

I have to disagree with your comment on this type of inoperable tumour. I have had a grade III AA, and had it fully resected, I'm now 5 days away from finishing radiotherapy. Not all AAIII's are inoperable!

jimr63
Posts: 1
Joined: Jan 2009

Have just been diagnosed (today received neurological pathology report) with Grade 3 AA (occipital lobe); caught very early. Becaue of location, recomendation is to proceed directly to Radiation w/chemo; no surgery. Any thoughts?

Mannie
Posts: 51
Joined: Oct 2008

You can always get a 2nd opinion if you're uncomfortable with that option. You can call doctors and see what they say, you don't have to go and make an appointment unless you want to. I've received all my medical care at the University of Pittsburgh Medical Center (UPMC) Hillman Cancer Center or across the street at the UPMC Shadyside Hospital Cancer Institute. I know they do lot's of different procedures, treatments, off label treatments, and clinical trials but I had standard treatments. I had an awake craniotomy, IMRT radiation, and took Temodar. My tumor was in my frontal lobe. If you really were hoping to have surgery and cut the tumor out, I know that my surgeon does a surgery where he removes tumors through a person's nostrils, maybe something like that could be done for you. I don't know, I'm just trying to offer a suggestion.

Mannie

mimimason723
Posts: 1
Joined: Jan 2009

Hi Mannie

Who did you see at University of Pitt? I had heard good things about their hospital. Curious if they would have anything else to offer my boyfriend with an anaplastic astrocytoma grade 3.

Mary

Mannie
Posts: 51
Joined: Oct 2008

Mimimason723,

Thank you for asking me about my doctor. I appreciate it. Nobody's ever asked me about my doctor. UPMC has a lot of cancer centers within the medical system; I used 3 of them.

Dr. Frank Lieberman is my neuro-oncologist but I also see my neurosurgeon, Dr. Arlan Mintz, every 3 months as a precautionary thing even though it will be 2 years in March since my diagnosis. I get an MRI every 3 months still. They are both very thorough and both check my scans before they see me, they both check my med. list, they both do the normal things doctors do but I see them both together (within 15 minutes of each other). That's when they come up with a new plan for the next 3 months. I don't ever see them independent of each other unless I have a problem, like a seizure, which happened. Dr. Lieberman makes sure my primary care doctor and radiation oncologist (Dr. Alex Chen) get updates about my care. I personally think that's really amazing because I used to have a doctor that couldn't even call to give me test results and because I'm not under my rad.oncologist's care anymore. He just thinks that it's important enough to let them know that I'm doing great, and I'm just really impressed that Dr. Lieberman's not too busy to take time out to include everyone.

I have to give you fair warning though...everyone I know that sees Dr. Lieberman agrees that he comes off as being quite an arrogant jerk at first but he really is a very smart doctor and I trust him with my life completely. I've heard of him saving other people too. I was given less than 9 months to live and that was almost 2 years ago just to put that into perspective. I go to a brain cancer support group and none of us have fired him for being too smart and arrogant because he is a fantastic doctor and we've been able to see past that, after a couple visits he loosens up. Dr. Mintz is completely different. He has developed several surgeries and is a very respected surgeon. They both have been on national TV/radio shows talking about brain cancer stuff. I was very fortunate to fall into their medical circle. Dr. Lieberman is working on a brain cancer vaccine and some other clinical trials but since my kind of cancer isn't a real common one I don't qualify for any of them.

Dr. Lieberman is the director of the adult neuro-oncology program of the UPMC cancer centers. Dr. Mintz is the director of the adult neuro-surgerical oncology program. You might want to google them or go to upmc.com to see what you come up with.

I know several people with anaplastic astrocytomas that see Dr. Lieberman. They do different things of course but the most common route from what I've observed is surgery (with Dr. Mintz or one of his partners), radiation, chemo (Temodar, Avastin and CPT-11, or something else). That's what I've seen from the people in the brain cancer group I go to. I think they would offer good ideas but I don't know what they would be or if they'd be what your boyfriend would be interested in doing.

Please take good care of yourself too while you go crazy taking care of him. He notices when your not taking care of yourself and will feel bad about it, trust me. You might want to look at virtualtrials.com. There's lot's of info there.

You can always e-mail them and they will e-mail you back. They are really good at e-mailing their patients back, they're really accessible to their patients, which is a really good thing when you have cancer. The staff is accessible too.

daught89
Posts: 1
Joined: Apr 2009

jimr63,

did you decide on a course of treatment?

dolmstcole
Posts: 3
Joined: May 2012

I was told 12/11/11 had a brain tumor, frontal lobe over right eye. Had minimal symptoms, insomnia and depression. I was seeing many different doctors. Not one of them added up the tenth leading cause of women in my age group (49).
THE BIGGEST Choice of a Life is
Where and How to Get Treated
I went to the #1 Brain Cancer Hospital 21 years running- Hopkins in Baltimore.
Best case for anyone I met is to find a large study/teaching/research facility with excellent track record.
Be Your Own Advocate.
Question the Providers - if you don't like them, go somewhere else.
I have heard of people trying diets or getting natural treatment.
Try to find one medical study on those survivors.
There Are None. AA III is an agressive cancer. It wants to kill its host.
It is best to declare war on the cancer and attack with everything medicine has got.
I was treated with surgery, IMRT radiation @200 then 180 cGy per day, and 150 mg of Temodar for 33 days.
Was fortunate - did not get sick, tired, infections, or the other side affects. Had a dry eye from radiation site - small price to pay.
The Blood Brain Barrier is hard to penetrate. Research for years shows Temodar most effective with less nausea. Now research is refining that to see which other chemo pills/ drugs improve on that. The breakthroughs in this arena are amazing in past decade. Dont look at old surveys or studies - they cannot compare to nowadays treatment.
Don't stop looking for help-- do research - find help.
If you are treated far from home, contact Cancer Society for lodging assistance, or church groups or employee groups. You will be welcomed with open arms.
I have treated this plague like any other, and will continue to do so, as that is what it is-- a disease to be treated and cured
Best Wishes to your family - fight the cancer together abd be there for the success as well as the setbacks.
Donna

akmoo4
Posts: 1
Joined: May 2012

Im have been very scared to look at one of the sights for what I might find. My tumor is class 3 started taking radiation monday so Ive had 5 and 5 nights of Temdor. I was told because my tumor was on the left frontal they call not operate. I was also told that I had 18 -24 months to live seem to me thats a long time to get that thing out of my head. With all the meds I take I do a lot of praying Im 47 with 4 kids and a wife I know cancer dont care but I do and Ill fight till my last.

LisaW12
Posts: 1
Joined: Sep 2012

My husband was diagnosed with Stage 3 AA on 12/26/2000. It was in the left frontal lobe. He had immediate surgery to remove what they could of the tumor and then started on the standard Temador and radiation. In the meantime, we decided to go to Moffitt Cancer Center and they suggested a port with chemo and of course, radiation. My husband's neurosurgeon advised a 2nd surgery with chemo wafers. We opted for the surgery and my husband was cancer free and living a fairly normal life, memory loss was the biggest issue. Now, 11 years later, the cancer is back. We are going for the chemo wafers again as I firmly believe that is what kept him here with us, beside God, of course! I cannot believe they have people on the Temador or straight chemo when the wafers give a 1500 times more stronger does and it only stays in the brain, not thru your entire system.
I hope Kevin's story can help someone. God Bless all that is going through this disease and take hope!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Lisa:

Thank you for sharing your husband's experience. I have heard of the wafer treatment. I HOPE that they have made advancements of the wafer treatment and medicine. It is so helpful to read of other survivors - it gives us all HOPE. I send God's blessings to you. My daughter was diagnosed in 2011 and she is stable for now and each day we remain HOPEFUL.

God Bless.

Edna

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