18 yr old with Anaplastic Astrocytoma stage III

patriciam

momsworld said:

clear MRI
Hi there,
my now 13 year old daughter who has been diagnosed with AA3 just had her 2nd clear MRI. What good news. She is on a 5 drug regimen, 2 of the 5 are oral chemo and Avastin everyother week. She seems to be doing very well with this treatment other than being tired alot. So far so good. For all of you who feel that you just can't get ahead, I know how you feel. My daughter has had 4 crainiotomies to remove new tumor growth. She went through traditional treatment of radiation and oral chemo, which did not work. We decided to go to a different hospital and cancer center. They told us that there are options. She has been on this new treatment now for about 4 months. We are hoping and praying that this treatment will continue to work. If you can, go to a teaching hospital. We are now going to Dana Farber/The Jimmy Fund Clinic and Childrens Hosp in Boston and they have been WONDERFUL. They not only treat the patient, but the whole family. I will never bring my daughter anywhere else for her treatments,EVER. We still have such a long road ahead, but the JMC has made things so much easier for us. You need hope and they give it.

AA III, 18 year old
I am so glad to hear your daughter is doing well. Praise God.

PBJ Austin

momsworld said:

clear MRI
Hi there,
my now 13 year old daughter who has been diagnosed with AA3 just had her 2nd clear MRI. What good news. She is on a 5 drug regimen, 2 of the 5 are oral chemo and Avastin everyother week. She seems to be doing very well with this treatment other than being tired alot. So far so good. For all of you who feel that you just can't get ahead, I know how you feel. My daughter has had 4 crainiotomies to remove new tumor growth. She went through traditional treatment of radiation and oral chemo, which did not work. We decided to go to a different hospital and cancer center. They told us that there are options. She has been on this new treatment now for about 4 months. We are hoping and praying that this treatment will continue to work. If you can, go to a teaching hospital. We are now going to Dana Farber/The Jimmy Fund Clinic and Childrens Hosp in Boston and they have been WONDERFUL. They not only treat the patient, but the whole family. I will never bring my daughter anywhere else for her treatments,EVER. We still have such a long road ahead, but the JMC has made things so much easier for us. You need hope and they give it.

HOORAY for your little girl!!
That's the best news I've heard all day. I'm glad you found a new hospital. My kid sis started out with a doctor that didn't offer much hope but she went to MD Anderson for a second opinion and she just had another clear MRI in January.

Friends, if you are not happy with the care you are getting I cannot stress enough the need to seek other options.

Hugs and blessings to all.

patriciam

KMPonder said:

Bless you Patricia. I hate
Bless you Patricia. I hate this for your daughter as well. Can you talk more about the cyst? A cyst in the brain? I had not heard of such and do they think that's caused by treatment, or is the cause unknown?

It's a true art not to constantly talk brain tumors/treatment/appointments with my hubby, because it's such a big part of our lives. We do still laugh, though. Just this morning we had a good a laugh. Because of his vision loss, he can't drive. He has an MRI this afternoon, only about 5 minutes from the house. I asked, "How would you get there if I didn't want to drive you?" (Because I wanted to lounge in bed all day, jokingly.) I answered for him, "You could take a cab. That would be cheap." He said, "No. I'd ride my bike!" We cackled and then I piped in, "Better yet, you could drive your camouflage golf cart, and maybe you'd make it there before someone would call the cops!"

I guess you had to be there, but humor was such a big part of lives before and we hate to be down all the time. As he reminds me, life is still very good.

We pray complete healing for your daughter!

cyst
HI KM Ponder,
Yes, she has a cyst above the tumor. The neuro-surgeon said that she has seen this happen many times and that the cyst usually shows up in the same place as the tumor. She said they are not sure why it occurs but it may be as a result of treatment.

connsteele

KMPonder said:

Let me say that I am sorry
Let me say that I am sorry to hear about your brother's diagnosis. Has your brother begun treatment?

My husband was diagnosed with AA at age 43, although his first brain tumor (a mixed germ cell tumor) was diagnosed at age 20. That one completely disappeared after chemo and radiation and he lived a very healthy life for 22 years. We do know that my husband's AA tumors (there were 3), were caused by the radiation he had for the first tumor in 1987. It's my understanding that most AA diagnoses are unknown causes (like most brain tumors), so my husband's symptoms (imbalance, vision issues) presented themselves more quickly than they might for others. When the symptoms presented themselves, knowing his history, we got medical attention very quickly.

Good news is that my husband, now 45, responded very well to his chemo (Temodar) and more radiation treatment. The tumors are gone. He is feeling very good, except he's lost significant vision due to radiation damage.

It's my belief tumors are not age discriminatory, but I do think they realize that certain types are more commonly seen in among certain age groups.

I hope you and your family will continue to educate yourself well with all the treatment options. There is great hope for your brother to recover and do well and live a long, healthy life. The road can be rocky at times, but always keep hope.

Kim

AAIII caused by previous cranial radiation
We are in a similar situation. My son was diagnosed in 1985 with a medulloblastoma at age of 8 and had CNS radiation, both whole brain and spine, with a radiation boost to the cerebellum where the tumor was located. The radiation did cause some permanent long term effects, including mild learning disability, and hypo pituitary with growth hormone deficiency. Anyway, despite all this, he has managed well, went on to become independent, even moving out of state (Washington DC area), working for the government, going on 11 years now. Then seven weeks ago, he had a seizure. So, 26 years later, at the age of 34, he has been diagnosed with a stage III astrocytoma. He had surgery, but only enough tissue taken to get a diagnosis. He is scheduled to start the Temodar and radiation tomorrow. They too said that the previous radiation most likely caused this second cancer. I have a lot misgivings about the radiation and what further permanent negative effects it will have, including further cognitive decline and radiation necrosis, because it will be given in the same location (cerebellum)as the first time. The radiation doc seemed to be very cautious about further radiation damage and said he is consulting with various other institutions about what dosage to give. Was your husband's second round of radiation in the same area where he had the first? Has it caused any further permanent damage, that you can see? It is good to hear that he is doing well after this second bout.

connsteele

KMPonder said:

Let me say that I am sorry
Let me say that I am sorry to hear about your brother's diagnosis. Has your brother begun treatment?

My husband was diagnosed with AA at age 43, although his first brain tumor (a mixed germ cell tumor) was diagnosed at age 20. That one completely disappeared after chemo and radiation and he lived a very healthy life for 22 years. We do know that my husband's AA tumors (there were 3), were caused by the radiation he had for the first tumor in 1987. It's my understanding that most AA diagnoses are unknown causes (like most brain tumors), so my husband's symptoms (imbalance, vision issues) presented themselves more quickly than they might for others. When the symptoms presented themselves, knowing his history, we got medical attention very quickly.

Good news is that my husband, now 45, responded very well to his chemo (Temodar) and more radiation treatment. The tumors are gone. He is feeling very good, except he's lost significant vision due to radiation damage.

It's my belief tumors are not age discriminatory, but I do think they realize that certain types are more commonly seen in among certain age groups.

I hope you and your family will continue to educate yourself well with all the treatment options. There is great hope for your brother to recover and do well and live a long, healthy life. The road can be rocky at times, but always keep hope.

Kim

Second brain tumor diagnosis
So glad to hear your husband had done so well. Our son has just been diagnosed with an Astrocytoma grade III, 26 years after being treated (chemo and whole brain radiation) for another brain tumor, a medulloblastoma.
Since the first time around with radiation was really hard on him, I am really worried about what it will do to him this time. In fact, I wonder why he should even go through with it when the docs said that any treatment will not make the tumors go away, just "slow things down."
Can you say what was your husband's tumor grade? Were they able to remove all the tumor in surgery? Don't want to be too nosy but it's good to hear how well your husband had done with this second brain cancer diagnosis and hoping to see parallels with our son. Thanks.

cushla69

KMPonder said:

Bless you Patricia. I hate
Bless you Patricia. I hate this for your daughter as well. Can you talk more about the cyst? A cyst in the brain? I had not heard of such and do they think that's caused by treatment, or is the cause unknown?

It's a true art not to constantly talk brain tumors/treatment/appointments with my hubby, because it's such a big part of our lives. We do still laugh, though. Just this morning we had a good a laugh. Because of his vision loss, he can't drive. He has an MRI this afternoon, only about 5 minutes from the house. I asked, "How would you get there if I didn't want to drive you?" (Because I wanted to lounge in bed all day, jokingly.) I answered for him, "You could take a cab. That would be cheap." He said, "No. I'd ride my bike!" We cackled and then I piped in, "Better yet, you could drive your camouflage golf cart, and maybe you'd make it there before someone would call the cops!"

I guess you had to be there, but humor was such a big part of lives before and we hate to be down all the time. As he reminds me, life is still very good.

We pray complete healing for your daughter!

Bless you Tricia, you have
Bless you Tricia, you have went through this with ur husband and now ure precious daughter. I know thta has got to be hard. I found out bout mine in nov 2010, but first got sick march 2010. This has been hard enough with me having his, i am so scared i wont live long enough to see my daughter raised, thats my biggest fear right now. bless u and ur daughter loveheart952000@yahoo.com

alutiiqmom

patriciam said:

AA III, 18 year old
Hi,
My daughter was diagnosed at 16, she is now 18. At 16, she had a resection, temador and radiation treatments. She did well and was tumor free for 20 months. The ugly tumor showed its face again in October 2010. Surgery cannot be done this time. She is now on Avastin and Iritotecan every two weeks. Along with the tumor, came a cyst that is giving her problems. She is trying really hard to live her life as normal as possible. A brain tumor is hard for anyone to take on, much less a young person. I am sorry for your brother and your family's pain. I so understand it. We all try to stay positive for her and fight this thing until it shrinks away. I have learned a lot through all of this. An 18 year old wants to date, go to college..... be 18. I have learned to hold her hand through this fight, allow her to live her life and encourage her. I have learned not to bring it up all the time and make her relive the nightmare over and over.
God bless.

how is your daughter doing now?
Hi:
My 17 year old daughter was diagnosed in February with AA3 with one tumor, but hey could not remove it all surgically. We did radiation and chemo and now we rae in the Temodar combined with the infusion every other week.
I understand the frustration and sadness of watching your beautiful young daugher want to drive and go off to college but being held back by this horrible illness. We still don't know if our daughter is in remission. I hope and pray.
Have you heard of any alternative treatments that work? I hope and pray for your daughter as well.

alutiiqmom

patriciam said:

AA III, 18 year old
Hi,
My daughter was diagnosed at 16, she is now 18. At 16, she had a resection, temador and radiation treatments. She did well and was tumor free for 20 months. The ugly tumor showed its face again in October 2010. Surgery cannot be done this time. She is now on Avastin and Iritotecan every two weeks. Along with the tumor, came a cyst that is giving her problems. She is trying really hard to live her life as normal as possible. A brain tumor is hard for anyone to take on, much less a young person. I am sorry for your brother and your family's pain. I so understand it. We all try to stay positive for her and fight this thing until it shrinks away. I have learned a lot through all of this. An 18 year old wants to date, go to college..... be 18. I have learned to hold her hand through this fight, allow her to live her life and encourage her. I have learned not to bring it up all the time and make her relive the nightmare over and over.
God bless.

How is your daughter doing?
Hi:

I have a 17 year old fighting the same devasting illness. It is so hard to watch them struggle. I accidentally posted to the wrong person, so you may see a similar email. I intended it for you. I hope you are doing better! God bless you and your daughter.

alutiiqmom

PBJ Austin said:

Stay off the internet--except this site. :-)
First of all be careful not to google too much. A lot of what you will find is either out of date or a worst case scenario. When my kid sis was first diagnosed I nearly went crazy reading all of the grim stuff about AA3. Then I found this site and it was my first glimmer of hope that she can beat this.

When the diagnosis first came they found 2 tumors, a large one and a smaller one. They later found a 3rd one which was much smaller than the other two. The doc who discovered the first 2 tumors said they were both inoperable. She went to MD Anderson for a second opinion and Dr. Sawaya immediately said the larger tumor IS operable and did surgery. The remaining tumors were not operable but the treatment has worked for her and she has no visible tumors. Needless to say I'm a big cheerleader for a second opinion if you have been told a tumor is inoperable.

All the best to you.

treatment type?
HI:

Do you mind if I ask what treatment your sister got? My daughter has Anaplastic Astrocytoma 3 and had surgery (only partial removed tumor,but got most of it), then radiation and now chemo.

We are going back for a new MRI to see how she is doing. They were still concerned last time that it wasn't working, so I am trying to find options.

This is a dreadful illness. It is so hard to watch family members suffer. I hope you are all doing well. God bless you.

Finnegans Mom

momsworld said:

clear MRI
Hi there,
my now 13 year old daughter who has been diagnosed with AA3 just had her 2nd clear MRI. What good news. She is on a 5 drug regimen, 2 of the 5 are oral chemo and Avastin everyother week. She seems to be doing very well with this treatment other than being tired alot. So far so good. For all of you who feel that you just can't get ahead, I know how you feel. My daughter has had 4 crainiotomies to remove new tumor growth. She went through traditional treatment of radiation and oral chemo, which did not work. We decided to go to a different hospital and cancer center. They told us that there are options. She has been on this new treatment now for about 4 months. We are hoping and praying that this treatment will continue to work. If you can, go to a teaching hospital. We are now going to Dana Farber/The Jimmy Fund Clinic and Childrens Hosp in Boston and they have been WONDERFUL. They not only treat the patient, but the whole family. I will never bring my daughter anywhere else for her treatments,EVER. We still have such a long road ahead, but the JMC has made things so much easier for us. You need hope and they give it.

Hey momsworld clear MRI
Hey,
My 23 month old son was diagnosed with a thalmic AA3 in dec of 2012. He had 3 resections and the tumor was 90% gone. Then in June they saw it had grown a little. Then he had 3 rounds of chemo which included vp-16, carboplastin and cytoxan. During the last two months his tumor grew dramatically and is now entering other parts of his brain. We were told he has months to live. We are not giving up, his info is out to 13 hospitals. We are checking into alternative treatments. I was wondering where your daughters tumor was located? What worked best for her? We were told that the chemo he received was the best and that nothing would be as effective. What drugs are working for your daughter?

thank you so much, Nicole Mondroski- Finnegan's Mom