Astrocytoma Grade III-Survivor

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  • lawslegal
    lawslegal Member Posts: 38
    #42
    momfor2 said:

    quilmes
    My daughter had a grade II astrocytoma removed in March. Dr. said he removed it all and she needs no further treatment other than repeat mri's. He said if it did come back it probably would be a more aggressive tumor. He gave her a 50-50 chance of it coming back. Did your dr. tell you that

    My son is recovering from an astrocytoma
    Hi, I am happy that your daughter is doing well.

    Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

    I wish your daughter and your family the best.

    Sincerely, Laura, Michael's Mom
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #43
    lawslegal said:

    My son is recovering from an astrocytoma
    Hi, I am happy that your daughter is doing well.

    Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

    I wish your daughter and your family the best.

    Sincerely, Laura, Michael's Mom

    Michael's Story
    Hello Laura, I'm very pleased to hear your son's survival story. Can you tell us please what was the stage of his astrocytoma? My sister is in stage 3 and I am so hoping she can make a similar recovery. Thanks.
  • lawslegal
    lawslegal Member Posts: 38
    #44
    Michael's Story
    Hi,

    Yes, Michael's tumor was a low grade 2 astrocytoma. I wish your sister a full recovery. Keep me posted if possible.

    Thank you.
    Laura
  • sue Siwek
    sue Siwek Member Posts: 279
    #45
    K.Rose said:

    Information? Please?
    Hello,
    I'm new to this message board so I'm not quite sure about it all. I was curious (maybe you've said and I missed it) where is your husband's tumor located in the brain? I am 23 years old just completed my first chemo/radiation/chemo treatments and I haven't found many places til this that talk about brain tumors. Mine is a grade III astrocytoma located in my Thalamus pretty much exactly in the middle of my brain making it inoperable. I myself have numbness on my right side. It was found when I was 20 and now I'm 23, any infomation you could suggest would be greatly appreciated! Thank You!!

    tumor
    his tumor was near the thalamus and inoperable. he also has experienced numbness on his right side which has never gone away. he had chemo and radiation. the chemo went on for 3 years. actually he had 3 different ones. first tremodar which did not work for him, then he went into an experimental drug which shrunk the tumor but caused too many side effects. his last course of chemo was procarbazine and ccnu. he also has double vision but, had he not been diagnosed with parkinsons' disease he would have continued on with being fairly active. the two diagnoses have no relationship to one another so do not worry about that. i hope you are going to a teaching hospital. also, if you should experience shortness off breath get to the nearest hospital not to alarm you ,but brain tumor patients can get blood clots from i believe, the chemo. my husband got clots in his lungs and they put a filter in the chest somewhere and that was the end of that problem. best of luck. also, i am assuming that this is a primary tumor not a secondary and that is a good thing(if there is such a thing)! i am sure that you know this but just remember they are only treating one cancer not many. it is rare that brain cancer spreads anywhere else in the body but other cancer can spread to the brain. also, get physical, speech and psycho therapy it will help.
  • momfor2
    momfor2 Member Posts: 8
    #46
    lawslegal said:

    My son is recovering from an astrocytoma
    Hi, I am happy that your daughter is doing well.

    Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

    I wish your daughter and your family the best.

    Sincerely, Laura, Michael's Mom

    Michael's Mom
    Laura,

    I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
    Take care and good luck to you and your family. I will be buying your book when available.

    Diane (momfor2)
  • momfor2
    momfor2 Member Posts: 8
    #47
    lawslegal said:

    My son is recovering from an astrocytoma
    Hi, I am happy that your daughter is doing well.

    Five years ago, June 12, 2004, my then 13 year old son got suddenly ill and we rushed him to the hospital finding that he had a ruptured brain tumor. We then found out it was an astrocytoma. It is a long story but the surgeon did remove the entire tumor and he needed no further treatment. After his surgery, however, he had a stroke. After years of therapy he walks with a walker and cane. Graduated high school on June 12, 2009 and is getting ready for college. He just had his 5 year MRI and it was clean. It has been a long and hard road and he is doing great. I have just finished a book called, Michael's Journey and it should be out by Labor Day. I wrote the book for people like you. It is very inspirational.

    I wish your daughter and your family the best.

    Sincerely, Laura, Michael's Mom

    Michael's Mom
    Laura,

    I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
    Take care and good luck to you and your family. I will be buying your book when available.

    Diane (momfor2)
  • lawslegal
    lawslegal Member Posts: 38
    #48
    momfor2 said:

    Michael's Mom
    Laura,

    I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
    Take care and good luck to you and your family. I will be buying your book when available.

    Diane (momfor2)

    Hi Diane,
    I know
    Hi Diane,

    I know exactly how you feel when it is MRI time. Michael just had his 5 year one and I was still a mess. It is so hard. I will say a prayer for Amanda and know she will be okay. Like you, I had no idea what an astrocytoma was before Michael got sick. Now I know more medical terms than I ever wanted to.

    Please be sure to keep me posted. You can send me an email anytime at laura@b-plaw.com

    Let's keep in touch.

    Laura
  • sue Siwek
    sue Siwek Member Posts: 279
    #49
    gvillek said:

    Hello, first of all thank you for telling others about your story. My sister who is 26 years old and is fighting for her life. She also has Anoplastic Astroyctoma – Level 3. She has two small children and I live 90 miles away. I can't express the hope it give me that there are individuals that have survived this cancer! I have been searching for ways to encourage my sister not to give up.

    gvillek, don't know if you
    gvillek, don't know if you have been responded to but, want you to know that you need to go to a teaching hospital for the best chance of survival. my husband is a 9 year plus survivor. we went to henry ford hospital which was the best place for brain cancer in or area. get on line and find out the best place in your area for her cancer. it is a kick in the gut and you need to take charge when she is beaten down an advocate for her. you best chance is a teaching and research hospital. go! go! go! and good luck.
  • mish101
    mish101 Member Posts: 2
    #50
    PBJ Austin said:

    Michael's Story
    Hello Laura, I'm very pleased to hear your son's survival story. Can you tell us please what was the stage of his astrocytoma? My sister is in stage 3 and I am so hoping she can make a similar recovery. Thanks.

    Hi How is your sister? My
    Hi How is your sister? My son was just dx with stage 3 Just wanted ot ask some questions
  • mish101
    mish101 Member Posts: 2
    #51
    kmd1019 said:

    Astrocytoma
    Jose,

    This friday it will be 4 weeks since my 90% resection of my Astrocytoma Tumor. Yesterday I met with the Oncologist to get the next step. I found out that the next step will be 6 weeks of radiation and chemotherapy. I am trying to be strong and not doubt. Everyday I wake up and say that I am going to beat this thing.
    I am 28 years old and my husband and I just celebrated our 6th wedding anniversary on the 19th.
    What lead you to your tumor discovery? How did you cope with the times of doubt? My surgeon has been amazingly positive so I try to cling to that, but still get discouraged.
    I pray that all is still well with you, and if you could please fill me in on your journey.

    Thank You,
    Kara

    kmd1019 how are you??

    kmd1019 how are you??
  • Unknown
    Unknown
    #52
    This comment has been removed by the Moderator
  • MisV
    MisV Member Posts: 1
    #53
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    Astrocytoma grade III
    My tumor is in my right frontal lobe. Had my 1st seizure on Dec 10, 2000 & surgery on the 14th. My second surgery inAug2001. Yes I do have time issues. i speak out of line lots of times & blame it on the fact that my right frontal lobe is missing. My family & friends joke about it but, it bothers me a times. Misv
  • dsteras
    dsteras Member Posts: 8
    #54
    sue Siwek said:

    gvillek, don't know if you
    gvillek, don't know if you have been responded to but, want you to know that you need to go to a teaching hospital for the best chance of survival. my husband is a 9 year plus survivor. we went to henry ford hospital which was the best place for brain cancer in or area. get on line and find out the best place in your area for her cancer. it is a kick in the gut and you need to take charge when she is beaten down an advocate for her. you best chance is a teaching and research hospital. go! go! go! and good luck.

    gvillek, dont know if you
    It is wonderful to hear your husband is a 9 year surivor. My son is 18 and has AAstage3 and has had 3 surg. to remove all they can see without damange and 5 wks radiation 1 week cyber knife then at the same time chemo then white counts would not come back up so they change chemo and now the PET scan comes up with nothing active ours dr's at Geaorgetown unv say that it a good sign but NIH and Childerns say it has progressed so they want to do a trial med on him please what kinds of meds did you guys get and would you let them do exp. drug trial on your Child or family mamber? Hopeful that We can kick this
  • dsteras
    dsteras Member Posts: 8
    #55
    ronefx said:

    I posted in another thread,
    I posted in another thread, but I had a grade 3 astrocytoma tumor on the right frontal lobe. It was completely removed and have been cancer free as far as I know for 15 + years. I am looking to find other's stories of long term problems and issues they have had.

    i posted in another thread
    Wow I am so glad to see that you are 15 plus cancer free! my son is going through grade 3 astrocytoma tumor treatment now has had 3 recetions radiation and 2 chemo 1 bio drug now NIH would like to have him in a trial they thinck it has progressed and our dr's did a PET scan and showed no actived so we are so confused about letting them so more but I want my son to have the same wonderful result as you have can you shed some light on this
  • dsteras
    dsteras Member Posts: 8
    #56
    what is the best advice you can give
    my son is 18 stage 3 AA and has had 3 surg., radiation and chemo 3 kinds.One hosp. thinks the tumor is stable becuase the PET scan has no activity, NIH and Childerns hosp. thinks the tumor has progressed and want to try a exp. drug trial on him. Would you let them and what kind of chemo did you undergo?
  • dsteras
    dsteras Member Posts: 8
    #57
    janmiz said:

    effects of chemo & radiation
    I am the mother of a 47 yr old daughter who had AA grade 3.She is 7 yrs.clean.she is going to have her MRI in may and every time I cross my fingers.I have tried to ask docs about the long term effects with no answers.I finally realized that they just don't know, as most people don't last long enough to do studies on them.I saw that my daughter didn't lose hair from the temedar but she lost hair from the radiation.large strip that didn't come back. she has gone to a doctors for tests and has short term memory loss ,fatigue,cognitive problems ,impulsivness, loss of common sense ,anxiety and some times depression.each year that she takes the tests it gets a little worse.I blame the radiation to her brain.I am sure that it has killed good cells as well as bad cells.she certainly is very frustrated.I feel it is getting worse little by little.

    long term effects
    my son was dig. with AAgrad 3 june 2008 and had 3 surg. radiation and chemo "His hair has not come back completely where the cyber knife was" now waiting for a trial to start at NIH hope that we can kick this as you have please any advice? frustrated is a under statment.
  • kitkatkaz
    kitkatkaz Member Posts: 4
    #58
    gvillek said:

    Hello, first of all thank you for telling others about your story. My sister who is 26 years old and is fighting for her life. She also has Anoplastic Astroyctoma – Level 3. She has two small children and I live 90 miles away. I can't express the hope it give me that there are individuals that have survived this cancer! I have been searching for ways to encourage my sister not to give up.

    Anaplastic Astrocytoma stage 3 Survivor- 5+ yrs
    All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
    however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

    That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

    Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

    Healed and whole in the name of Jesus. Drug Free, Cancer Free.

    If I can help in anyway please let me know
    God Bless Kitkatkaz
  • dsteras
    dsteras Member Posts: 8
    #59
    kitkatkaz said:

    Anaplastic Astrocytoma stage 3 Survivor- 5+ yrs
    All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
    however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

    That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

    Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

    Healed and whole in the name of Jesus. Drug Free, Cancer Free.

    If I can help in anyway please let me know
    God Bless Kitkatkaz

    wonderful news 5+ yrs
    I'm so glad that you are doig so well and I know that GOD is the only one that can help any of us and God's taken care of my son this far and I know he wont let us down. We just have a long road ahead of us Hope its not a rocky one! we also have been to church for a healing pray. You can always help John my son with pray. so he to can be healed and whole in the name of Jesus.

    Thank you for for uplifting thoughts
    D Steras God bless you also
  • chicken2799
    chicken2799 Member Posts: 105
    #60
    kitkatkaz said:

    Anaplastic Astrocytoma stage 3 Survivor- 5+ yrs
    All the Glory goes to God. The tumor was in my right frontal lobe 3cm, with 2cm cyst around it. I had head aches, thought they were sinus, which I had the year before,
    however, I should have known when the tech doing the cat scan asked, when I was going over the results with the doctor, that something was not right. That was Thursday, Friday, My doctor, told me to "sit down, we have a problem".

    That Sunday in Church, the pastor, elders, and congregation prayed over me, and I recieved my healing from the Lord.

    Emergency Brain Surgery, 28 radiation treatments, 6 months of tremdor, and the steriods, and dilantan. 5+ years later, I stand before you.

    Healed and whole in the name of Jesus. Drug Free, Cancer Free.

    If I can help in anyway please let me know
    God Bless Kitkatkaz

    kitkatkaz
    I was diagnosed with Anaplastic Astrocytoma Stage 3! They found the tumor on October 20th, 2009, and done my surgery October 29th, 2009!

    The Sunday before my surgery I to went to church and rededicated my life to the Lord! Then two Sunday's from then (Sunday just past) after my surgery I gave my testimony at church. Feel free to go to facebook and request me Michelle Johnson and there is a link to You Tube to watch my testimony cause I want the world to know the power of Our Lord Jesus Christ!

    My treatment plan I have typed out because it is so hard repeating it so much so I will post here for all to know because my journey begins I believe November 30th:

    We received a call from UAB today before we left for my Radiologist appointment and they stated that they want me there Monday the 23rd at 11:00 AM. It is a one day appointment. They will review all of my medical records and slides to see if the treatment that the radiologist Dr. Russell, who I went to see today, and the chemotherapy Dr. Becker, that I will have to also see here in Mobile on Wednesday after I return from UAB, all agree on the best treatment possible. I go back to my radiologist Thursday for them to make a mask to mark where radiation goes. They want to do a combination of radiation that I will do 5 days a week for 6 weeks, and a Chemo Pill called Temodar I will take 7 days a week until the radiation is complete. I will see the Chemo Dr. maybe once a week to monitor blood levels throughout the therapy, but they feel this is the best way to aggressively treat and keep the Cancer from returning and spreading. The radiologist is confident that this is the BEST course of action. He is glad that it is Dr. Nabor’s in UAB that will be my second opinion as well as his consultant on treatment. Dr. Nabor’s actually did a procedure on my Radiologist, treatment for something neurological and the radiologist has not had problems since Dr. Nabor’s helped him! My Radiologist has worked with Dr. Nabor's for over 15 years. The radiation treatments they state takes 15 minutes, and 10 of that is just getting me on a flat bed. The actual treatment only lasts 5 minutes. It is not enclosed, the machine is just above my head. They will put a face mask on me that has everything marked so the radiation goes the same place each time, it also holds my head very still so that I can not move it at all to be sure the radiation is only in the same spot every time. The side effects basically are that I may lose hair at the different spots where the radiation enters the skull, maybe some nausea that they can give me meds for, and that there may not be any other side effects. The chemo pill should be very tolerable as well. The Dr is also letting me come off the steroid at a more rapid pace. Yea maybe I will get some sleep. The Radiologist also mentioned he knows Davis Pilot when he noticed where I work :) I miss you guys, and I am very positive after meeting with the Radiologist. When I come back from UAB probably Tuesday since it is a one day appointment there, I will have to meet with the Chemo Dr. Wednesday the day before Thanksgiving, and my Radiologist said they will give me the Thanksgiving holiday off, and then start treatment. So since Radiation is Monday thru Friday I feel the treatment will most likely start Monday after Thanksgiving which will be November 30th. So 6 weeks from then I should be on the road back to me :) He did say that about week 2 or 3 of the combination therapy I will most likely be real fatigued and tired, but I can live with 3 or 4 weeks of feeling yucky since I had headaches for a few months and was sick everytime I turned around. It will honestly be nothing different than what I was already feeling. I will let you guys know the exact date treatment will start when we know, and we can count down the 6 weeks!

    You stay positive still kitkatkaz! I am glad to have read your story. This discussion thread had been a lifeline to me with all the insomnia from the Decadron.

    Love,
    Michelle
  • RCOLUCCI
    RCOLUCCI Member Posts: 1
    #61
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    IT'S ENCOURAGING TO HEAR
    IT'S ENCOURAGING TO HEAR THAT YOU ARE A TEN YEAR SURVIVOR. MY DAUGHTER WAS DIAGNOSED WITH A GRADE 2 ASTROCYTOMA IN THE LEFT FRONTAL LOBE ALSO A LITTLE OVER 3 YEARS AGO. SHE HAD A CRANEOTOMY AND MRI'S AT FIRST EVERY 3 MONTHS THEN 6 MONTHS UNTIL DECEMBER OF LAST YEAR IT GREW BACK.THEN ANOTHER SURGERY IN APRIL OF THIS YEAR. IT WAS UPGRADED TO STAGE 3 SO THEY DECIDED TO DO RADIATION THEN CHEMO. SHE IS CURRENTLY DOING CHEMO (TEMADOR) FOR 7 DAYS EACH MONTH UNTIL JUNE OR SO...DOCTORS RECOMMENDED 12 TO 14 MONTHS OF TREATMENT. DOCTORS GAVE HER A STATISTICAL 3 TO 5 YEAR SURVIVAL. SHE HAS 2 SONS 2YRS AND 5YRS. DO YOU HAVE KIDS AND DID YOU HAVE A SIMILAR SITUATION? WERE YOU GIVEN THE SAME SURVIVAL RATE? DO YOU HAVE TO TAKE ANTI-SIEZURE MEDS? DID OR DO YOU HAVE ANY COGNITIVE AFFECTS?

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