Anaplastic Astrocytoma grade 3-4 in my 10 year old daughter.

Lester2k1
Lester2k1 Member Posts: 5
in Brain Cancer #1
Hello to all,
My 10 year old daughter was diagnosed on 11/29/11 with Anaplastic Astrocytoma in the grade 3-4 range. This is a huge shock to my wife and I as she exhibits no signs of a problem. She complained about a very mild headache for a few weeks, but it wasn't until she started saying that her eyes were doing something weird that we started to get concerned. A trip to the eye doctor showed swelling behind her eyes. A few hours later an MRI confirmed the problem and 12 days later the diagnosis after a biopsy.

We have been to Children's Hospital of New Olreans and their prescribed treatment will be Tremadore liquid (my daughter has problems swallowing pills) everyday along with 6 weeks (5 days per week) of focused radiation. The "AA" is spread a bit on the left side only.

My question is this:
Should we follow this line of treatment or seek treatment elsewhere. I have read a little about St. Jude as well as MD Anderson's Proton treatment. Is there anything out there that is showing real promise??

Comments

  • connsteele
    connsteele Member Posts: 232
    #2
    Standard Treatment
    So sorry to hear that your daughter had been diagnosed with AA3.

    From what I've gleaned from subscribing to this discussion board since our son was diagnosed in April 2011 with Anaplastic Astrocytoma, the treatment being prescribed for your daughter is pretty standard. It's the same as that for our 34 year old son, who was first diagnosed when he was living in Washington DC area and now has had to move home with us in Ohio as his deficits prevent him from living independently. The treatment regimen presecribed in Virginia was the same that he's getting now at The James Cancer Center at Ohio State University. We feel that The James is a good place as it is affiliated with NIH and therefore connected to the latest research and treatments.
    Our son is now on the 5 day out of 28 day cycle for Temodar and so far, things have been stable, with some shrinkage of the tumor. HIs doc has said if the Temodar stops working, then he would look at something else.
    I'm thinking the differences in treatment protocols happen if and when the initial radiation and Temodar regimen fail to do the job. Maybe others on this list can let me know if this is indeed the case.
    I feel that getting a second opinion is never a bad idea but one thing you have to consider in traveling great distances to get other treatments (or clinical trial) is the cost, not only financially, but the wear and tear it puts on you and the patient physically during a time when the patient is not feeling well, and also emotionally . We had to stay in Virginia for the first three months after our son's diagnosis, surgery, and radiation, and the stress was incredible as we didn't know anyone and had no support from family or friends.
    I know how you are feeling in wanting to be sure that your daughter is getting the very best treatment. From what I've read, it's best to go to a major research hospital, usually affiliated with a university. Is the hospital where your daughter is being treated fall under that?

    Here's hoping and praying that things go well for your daughter.
  • Lester2k1
    Lester2k1 Member Posts: 5
    #3
    connsteele said:

    Standard Treatment
    So sorry to hear that your daughter had been diagnosed with AA3.

    From what I've gleaned from subscribing to this discussion board since our son was diagnosed in April 2011 with Anaplastic Astrocytoma, the treatment being prescribed for your daughter is pretty standard. It's the same as that for our 34 year old son, who was first diagnosed when he was living in Washington DC area and now has had to move home with us in Ohio as his deficits prevent him from living independently. The treatment regimen presecribed in Virginia was the same that he's getting now at The James Cancer Center at Ohio State University. We feel that The James is a good place as it is affiliated with NIH and therefore connected to the latest research and treatments.
    Our son is now on the 5 day out of 28 day cycle for Temodar and so far, things have been stable, with some shrinkage of the tumor. HIs doc has said if the Temodar stops working, then he would look at something else.
    I'm thinking the differences in treatment protocols happen if and when the initial radiation and Temodar regimen fail to do the job. Maybe others on this list can let me know if this is indeed the case.
    I feel that getting a second opinion is never a bad idea but one thing you have to consider in traveling great distances to get other treatments (or clinical trial) is the cost, not only financially, but the wear and tear it puts on you and the patient physically during a time when the patient is not feeling well, and also emotionally . We had to stay in Virginia for the first three months after our son's diagnosis, surgery, and radiation, and the stress was incredible as we didn't know anyone and had no support from family or friends.
    I know how you are feeling in wanting to be sure that your daughter is getting the very best treatment. From what I've read, it's best to go to a major research hospital, usually affiliated with a university. Is the hospital where your daughter is being treated fall under that?

    Here's hoping and praying that things go well for your daughter.

    Children's Hospital
    I've called and talked to St. Jude in Memphis. They stated that the level of treatment that my daughter is getting is pretty much what anyone would be doing at this point. It seems that her condition is grade 3-4 in at least part of the biopsy area, but the Radiology/Oncologist stated that the larger part of the disease does not appear to be aggressive on the MRI. She is very optimistic of a good outcome.

    I will be sending my daughter's medical records to MDAnderson for them to review for possible Proton Therapy. Right now my daughter will receive Photon Therapy.

    We are believing that Jesus is going to do an amazing work in her life.
  • sadinholland
    sadinholland Member Posts: 248
    #4
    Lester2k1 said:

    Children's Hospital
    I've called and talked to St. Jude in Memphis. They stated that the level of treatment that my daughter is getting is pretty much what anyone would be doing at this point. It seems that her condition is grade 3-4 in at least part of the biopsy area, but the Radiology/Oncologist stated that the larger part of the disease does not appear to be aggressive on the MRI. She is very optimistic of a good outcome.

    I will be sending my daughter's medical records to MDAnderson for them to review for possible Proton Therapy. Right now my daughter will receive Photon Therapy.

    We are believing that Jesus is going to do an amazing work in her life.

    Lester2k1, I am prayng for
    Lester2k1, I am prayng for your daughter! God bless!
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #5
    connsteele said:

    Standard Treatment
    So sorry to hear that your daughter had been diagnosed with AA3.

    From what I've gleaned from subscribing to this discussion board since our son was diagnosed in April 2011 with Anaplastic Astrocytoma, the treatment being prescribed for your daughter is pretty standard. It's the same as that for our 34 year old son, who was first diagnosed when he was living in Washington DC area and now has had to move home with us in Ohio as his deficits prevent him from living independently. The treatment regimen presecribed in Virginia was the same that he's getting now at The James Cancer Center at Ohio State University. We feel that The James is a good place as it is affiliated with NIH and therefore connected to the latest research and treatments.
    Our son is now on the 5 day out of 28 day cycle for Temodar and so far, things have been stable, with some shrinkage of the tumor. HIs doc has said if the Temodar stops working, then he would look at something else.
    I'm thinking the differences in treatment protocols happen if and when the initial radiation and Temodar regimen fail to do the job. Maybe others on this list can let me know if this is indeed the case.
    I feel that getting a second opinion is never a bad idea but one thing you have to consider in traveling great distances to get other treatments (or clinical trial) is the cost, not only financially, but the wear and tear it puts on you and the patient physically during a time when the patient is not feeling well, and also emotionally . We had to stay in Virginia for the first three months after our son's diagnosis, surgery, and radiation, and the stress was incredible as we didn't know anyone and had no support from family or friends.
    I know how you are feeling in wanting to be sure that your daughter is getting the very best treatment. From what I've read, it's best to go to a major research hospital, usually affiliated with a university. Is the hospital where your daughter is being treated fall under that?

    Here's hoping and praying that things go well for your daughter.

    I agree
    Hi:

    I agree with what Connsteele said on all the points of treatment and hospitals. I wish you the best for your daughter. May God bless you and yours today.

    Edna
  • momsworld
    momsworld Member Posts: 135
    #6
    Hi
    I just want you to know that you are not alone in this. My 14 year old daughter has been battling this since march 2010. never give up hope. there will be many ups and downs, and you will have good and bad days. This site is great. it will keep you sane. I will pray for your daughter and for you to continue being strong.please keep us updated
  • chicken2799
    chicken2799 Member Posts: 105
    #7
    Treatment
    I am 35 years old, and was diagnosed with AA3 in October 2009. I was put on the same treatment that you described, Temodar, and the radiation for 6 weeks. After my radiation they increased the Temodar and went to the 5/28 cycle for a year. All of my MRI's have been stable, and it has been 2 years. My tumor was on the left frontal lobe, and the neurologist said that if you had to have a tumor, that was the ideal place. He has never given me a timeline, and I will continue to keep my faith in God as well! I have a 4 year old that I want to see get married one day! My heart breaks for you and what you will have to go through. I live in Mobile which is not to far from you, and I go to UAB in Birmingham. They have some of the top Neuro Oncologists there. It is a University, and it is not to terribly far from home. It takes about 3 1/2 hours to get there. I agree that you want to stick close as you can to home, because the travel can be very tiring when you are feeling really bad. I will keep you in my prayers.

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