Fast recovery from AA3--Miracle or Mistake?

PBJ Austin
PBJ Austin Member Posts: 347 Member
edited March 2014 in Brain Cancer #1
Ladies and gentlemen I could really use your expert advice. I want so much to believe this is real but it seems so bizarre I'm afraid to fully embrace it.

In March 2009 my kid sister was diagnosed with Anaplastic Astrocytoma 3. They surgically removed a tumor that was an inch in diameter. There was still an inoperable tumor of about 1/2 inch and a few cancerous specks indicating the cancer has spread throughout the brain. We were told she has 3-7 years to live. Kid sis never bought that and she told us she will beat this. I told her as long as she thinks she can beat this, then so do I. I still believe she can beat this but please tell me if this timeline makes any sense.

She went through radiation and began chemo in April 2009. Her first MRI in July 2009 and there was no change. They stepped up her chemo and in Nov 2009 the MRI showed shrinkage of 5%. Great news.

Just a few days ago she had another MRI and they cannot find any tumors at all!! She asked the doctor if this means she is in remission and he said no because he doesn't know exactly what is going on. But still, if this is true then she could indeed be in remission, right? Part of me wants to jump out of my skin with joy, yet it seems so strange the remaining tumor and specks would disappear in only 3 month's time.

My other sister and I are very afraid there has been some kind of mistake. Can it really happen this fast? Or should we open a bottle of bubbly? Please help if you can, you all know far more than I do. Thanks.
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Comments

  • patriciam
    patriciam Member Posts: 39
    #2
    AA3
    My daughter has AA3 too. I say that you should celebrate! Live in the moment, try not to think about the future. Embrace today. That is what I am trying to do. Too much thinking about the future is painful, so I live in the present. God bless and Congratulations on the good MRI. A big virtual hug for you from me.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #3
    patriciam said:

    AA3
    My daughter has AA3 too. I say that you should celebrate! Live in the moment, try not to think about the future. Embrace today. That is what I am trying to do. Too much thinking about the future is painful, so I live in the present. God bless and Congratulations on the good MRI. A big virtual hug for you from me.

    Thank you patriciam
    That's what I needed to hear!! And thank you for the hug, right back atcha. I knew she could beat this but it happened so fast it caught me off guard.

    I will hope and pray for your daughter's fast recovery as well.
  • KMPonder
    KMPonder Member Posts: 102
    #4
    Awesome!
    I see this as an absolute miracle and positive response to treatment! I am curious if the medical team will follow-up with a specific protocol, so please let us know if you can.

    I have posted this before, but hubby has AA. Diagnosed August 2009. These tumors were radiation induced - caused by treatment received in 1987 for a mixed germ cell tumor. They took 22 years to manifest themselves, and he lived a very active and healthy life all those years. Follow-up MRIs were done up to about 14 years post treatment, and then we did no more until new symptoms hit out of the blue. My advice would be to encourage regular MRIs, but I am no doctor.

    He's responding favorably to treatment now, and we go back to Duke this Thursday for his next MRI. The main thing I wanted to share with you was when he had his first tumor, after his 2nd round of chemo (it was inoperable as these are), the CT scan (at that time) showed the tumor had COMPLETELY disappeared! The Indian doctor even verbalized it a miracle. You must remember treatments have come a long way since then. But as a precaution to make sure, they did whole head/spine radaiation (now in 2009-10 we see the effects of that - URGH!) and another two cycles of chemo. At the time they thought that was best, so that's what they did. You can't say now he shouldn't have done it. He may not have had all these great years cancer-free.

    We are still expecting the same results, even though these are new and more aggressive tumors. This should be the MRI where they say, "They're gone! They're completely gone!"

    Stay positive and believe that it CAN be!!
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #5
    KMPonder said:

    Awesome!
    I see this as an absolute miracle and positive response to treatment! I am curious if the medical team will follow-up with a specific protocol, so please let us know if you can.

    I have posted this before, but hubby has AA. Diagnosed August 2009. These tumors were radiation induced - caused by treatment received in 1987 for a mixed germ cell tumor. They took 22 years to manifest themselves, and he lived a very active and healthy life all those years. Follow-up MRIs were done up to about 14 years post treatment, and then we did no more until new symptoms hit out of the blue. My advice would be to encourage regular MRIs, but I am no doctor.

    He's responding favorably to treatment now, and we go back to Duke this Thursday for his next MRI. The main thing I wanted to share with you was when he had his first tumor, after his 2nd round of chemo (it was inoperable as these are), the CT scan (at that time) showed the tumor had COMPLETELY disappeared! The Indian doctor even verbalized it a miracle. You must remember treatments have come a long way since then. But as a precaution to make sure, they did whole head/spine radaiation (now in 2009-10 we see the effects of that - URGH!) and another two cycles of chemo. At the time they thought that was best, so that's what they did. You can't say now he shouldn't have done it. He may not have had all these great years cancer-free.

    We are still expecting the same results, even though these are new and more aggressive tumors. This should be the MRI where they say, "They're gone! They're completely gone!"

    Stay positive and believe that it CAN be!!

    Thank you KMPonder
    It's so good to hear your husband's story. I'm glad to hear from someone who has seen a tumor disappear so quickly. It's a bit mind-blowing how the doctors were so grim last year when this was diagnosed, and now they are left scratching their heads as to why it's gone so soon. She will have another MRI in May and hopefully then the doctor will declare remission.

    Wishing good health and miracles to your husband and everyone on this board. Miracles do happen!!
  • keladavis
    keladavis Member Posts: 8
    #6
    PBJ Austin said:

    Thank you KMPonder
    It's so good to hear your husband's story. I'm glad to hear from someone who has seen a tumor disappear so quickly. It's a bit mind-blowing how the doctors were so grim last year when this was diagnosed, and now they are left scratching their heads as to why it's gone so soon. She will have another MRI in May and hopefully then the doctor will declare remission.

    Wishing good health and miracles to your husband and everyone on this board. Miracles do happen!!

    Miracle
    I believe what the others are saying as well. There is a lot of research that shows mind over matter and faith do work. We never know when or how fast it might work. Yes, I'm sure you are in shock, but celebrate what you can now because you don't know what the future holds. I would have the doctors follow your sister with consistent MRIs. I had an Oligodendroglioma for 4.5 years, and I prayed and imagined it would disappear the entire time. Sounds like a wish came true for her. My doctors first told me my was inoperable, then in 2008, they looked at my further and I found a doctor that would operate. It feels so good to have a tumor gone. I say celebrate!
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #7
    keladavis said:

    Miracle
    I believe what the others are saying as well. There is a lot of research that shows mind over matter and faith do work. We never know when or how fast it might work. Yes, I'm sure you are in shock, but celebrate what you can now because you don't know what the future holds. I would have the doctors follow your sister with consistent MRIs. I had an Oligodendroglioma for 4.5 years, and I prayed and imagined it would disappear the entire time. Sounds like a wish came true for her. My doctors first told me my was inoperable, then in 2008, they looked at my further and I found a doctor that would operate. It feels so good to have a tumor gone. I say celebrate!

    Thank you all
    Miracles DO happen, we must all keep the faith. Hugs and prayers to all of you.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #8
    PBJ Austin said:

    Thank you all
    Miracles DO happen, we must all keep the faith. Hugs and prayers to all of you.

    It's true!! It's really TRUE!!!!
    My kid sister had another MRI today and it's clear, AGAIN!! I can't believe just 13 months ago we were given such grim news and now she is cancer free. They are stopping her chemo but doing MRI's every 3 months in case it comes back.

    I want you all to know you can beat this, you really can. Please don't stop believing.

    Wishing peace and healing to all.
  • tommybear
    tommybear Member Posts: 111 Member
    #9
    PBJ Austin said:

    It's true!! It's really TRUE!!!!
    My kid sister had another MRI today and it's clear, AGAIN!! I can't believe just 13 months ago we were given such grim news and now she is cancer free. They are stopping her chemo but doing MRI's every 3 months in case it comes back.

    I want you all to know you can beat this, you really can. Please don't stop believing.

    Wishing peace and healing to all.

    Woo Hoo!
    (My 16 year old son would let out a victory yell!) Wow, that is amazing! Such wonderful news, I am so happy for your family!

    I'm going for another MRI on Thursday. I was diagnosed with a grade II Astrocytoma in my left Temporal Lobe, had surgery in late August and was told that they only removed about half of it. Had stereotactic radiosurgery in December and am waiting for results.

    Your news has definitely given me hope. Who knows? I could have the same type of news in a few days, right?

    Anyhow, thank you for sharing!

    Michele S.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #10
    tommybear said:

    Woo Hoo!
    (My 16 year old son would let out a victory yell!) Wow, that is amazing! Such wonderful news, I am so happy for your family!

    I'm going for another MRI on Thursday. I was diagnosed with a grade II Astrocytoma in my left Temporal Lobe, had surgery in late August and was told that they only removed about half of it. Had stereotactic radiosurgery in December and am waiting for results.

    Your news has definitely given me hope. Who knows? I could have the same type of news in a few days, right?

    Anyhow, thank you for sharing!

    Michele S.

    Good luck tommybear
    I certainly hope you get good news too. One of my kid sister's 3 tumors was in the left temporal lobe also. She had 2 other smaller tumors which were deeper and deemed inopearble, but now she has ZERO tumors. :-)

    I'm so glad to have given you hope and you will be in my prayers, as well as everyone else on this board. Please stay in touch.
  • megansmom
    megansmom Member Posts: 8
    #11
    Daugther with AA3
    What wonderful news, our daugther was diagnosised in Oct. 09 surgery just after, we have done radiation and currently still chemo. Small area of maybe a tumor still there, they were not totally sure so they treated as a tumor on in the tumor cavity maybe gray matter. They said that if we can go three years without recurrence then odds look good, she is 15 and no one should have to go through this. We ahve MRI on Tuesday as always worried. The last one looked good, so this one should to is what I tell myself. Do you know what chromosome abnormality your sisters tumor showed? Megan's had a gain in 1p and 19q otherwise just the P53 was present. A minimal area of the tumor enhanced with contrast, which leads the doctor's to believe that it has been there awhile and had started to reproduce cells faster likely advancing from stage 2 to 3. I am so glad I found a site like this to talk to others, would your sister be willing to email with my daugther or facebook?
    Thank you,
    Megansmom
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #12
    megansmom said:

    Daugther with AA3
    What wonderful news, our daugther was diagnosised in Oct. 09 surgery just after, we have done radiation and currently still chemo. Small area of maybe a tumor still there, they were not totally sure so they treated as a tumor on in the tumor cavity maybe gray matter. They said that if we can go three years without recurrence then odds look good, she is 15 and no one should have to go through this. We ahve MRI on Tuesday as always worried. The last one looked good, so this one should to is what I tell myself. Do you know what chromosome abnormality your sisters tumor showed? Megan's had a gain in 1p and 19q otherwise just the P53 was present. A minimal area of the tumor enhanced with contrast, which leads the doctor's to believe that it has been there awhile and had started to reproduce cells faster likely advancing from stage 2 to 3. I am so glad I found a site like this to talk to others, would your sister be willing to email with my daugther or facebook?
    Thank you,
    Megansmom

    Hello megansmom
    I'm sorry but I don't know the details of my sister's chromosome abnormality. I just called and left a message for my sister but she must not be home. When she returns my call I will ask if she will get in touch with your daughter. In the meantime you are welcome to send me her contact info in a private message unless you prefer to post it on this thread. I wish Megan and your family the best.
  • megansmom
    megansmom Member Posts: 8
    #13
    PBJ Austin said:

    Hello megansmom
    I'm sorry but I don't know the details of my sister's chromosome abnormality. I just called and left a message for my sister but she must not be home. When she returns my call I will ask if she will get in touch with your daughter. In the meantime you are welcome to send me her contact info in a private message unless you prefer to post it on this thread. I wish Megan and your family the best.

    Thank you, I wanted to see
    Thank you, I wanted to see if your sister would be willing before I talked to Megan. I will talk to her tonight and maybe by then you will know from your sister. If not I will send on private post. I is so good to hear from people who are ok, that life does go on. I sometimes feel totally consumed in cancer. I then feel guilty, I should be thankful she is here and that we are a family. Again thank you, I am so glad to have someone to share will.
    Stacy
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #14
    megansmom said:

    Thank you, I wanted to see
    Thank you, I wanted to see if your sister would be willing before I talked to Megan. I will talk to her tonight and maybe by then you will know from your sister. If not I will send on private post. I is so good to hear from people who are ok, that life does go on. I sometimes feel totally consumed in cancer. I then feel guilty, I should be thankful she is here and that we are a family. Again thank you, I am so glad to have someone to share will.
    Stacy

    Talked to my sister
    Hello megansmom, I finally had a chance to talk to my sister over the weekend and she is willing to visit with Megan. Whenever you are ready please give me some contact info and we will go from there.
  • megansmom
    megansmom Member Posts: 8
    #15
    PBJ Austin said:

    Talked to my sister
    Hello megansmom, I finally had a chance to talk to my sister over the weekend and she is willing to visit with Megan. Whenever you are ready please give me some contact info and we will go from there.

    How
    Question, How can I send you that information in Private, I can't seem to find that on the site.
    Thank you
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #16
    megansmom said:

    How
    Question, How can I send you that information in Private, I can't seem to find that on the site.
    Thank you

    Not sure....
    I'm not sure how to do that but I do know others have sent me private messages somehow. I'll try to figure it out later. In the meantime I have added you to my friend list in case that helps.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #17
    PBJ Austin said:

    Not sure....
    I'm not sure how to do that but I do know others have sent me private messages somehow. I'll try to figure it out later. In the meantime I have added you to my friend list in case that helps.

    I sent a private message to you, megansmom
    I think I did it right, but if you don't find it please post back and we will find a solution.
  • Snoweerane
    Snoweerane Member Posts: 10
    #18
    Incredible!!!!!!! A miracle for sure!
    Wow! I am totally amazed and truly happy for your sister! This is a miracle for sure! This has given me hope and inspiration for my daughter. I have a large extended family and I share alot of what I've read on this site as we are so devastated when my daughter was first diagnosed in Aug 2009. These past two months have been hard as her dosage of chemo has been increased. Her recent MRI showed no improvement and her cancer hasn't grown. We are praying that her next MRI will show no cancer! I have faith in God! Thank you for sharing your site. God bless you and your sister!
  • momsworld
    momsworld Member Posts: 135
    #19
    I want to thank you for this
    I want to thank you for this hopeful story. My 12 year old daughter was diagnosed with AA 3 in March 2010. Since then she has had 2 brain surgeries and is now going through radiation and chemo. The surgeon was able to remove the tumor but still gave us a poor prognosis because of the aggressiveness of this cancer. Your story has given me more hope than anything other than the Lord. I am praying everyday that I will be able to write what you have and that she will get better and be able to experience life.

    Tina
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #20
    momsworld said:

    I want to thank you for this
    I want to thank you for this hopeful story. My 12 year old daughter was diagnosed with AA 3 in March 2010. Since then she has had 2 brain surgeries and is now going through radiation and chemo. The surgeon was able to remove the tumor but still gave us a poor prognosis because of the aggressiveness of this cancer. Your story has given me more hope than anything other than the Lord. I am praying everyday that I will be able to write what you have and that she will get better and be able to experience life.

    Tina

    You are very welcome Tina
    I am so sorry to hear your daughter is ill and she will remain in my thoughts and prayers. A year ago I really thought my kid sister wouldn't be with us much longer but the doctors at MD Anderson have worked miracles for us. Of course there is no guarantee her cancer will never return but for now we are celebrating it's abscence in MRI's. I pray you and everyone on this board will have a miracle too.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #21
    PBJ Austin said:

    You are very welcome Tina
    I am so sorry to hear your daughter is ill and she will remain in my thoughts and prayers. A year ago I really thought my kid sister wouldn't be with us much longer but the doctors at MD Anderson have worked miracles for us. Of course there is no guarantee her cancer will never return but for now we are celebrating it's abscence in MRI's. I pray you and everyone on this board will have a miracle too.

    UPDATE JULY 19, 2010, New MRI results
    Ladies and gentlemen, my kid sister scores another victory in her battle with AA3, as her quarterly MRI was clear again today!! This is the 3rd clear MRI in a row. HOORAY!!

    We all must remember, technology and medical treatment improve all the time and we can beat this monster, I don't care what you have read or what you have been told. Never give up, never lose hope.

    My heart and my prayers are with all of you.

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