pxa

2

Comments

  • huxley2006
    huxley2006 Member Posts: 27 Member
    G.Mill said:

    18 year old son being treated at St. Judes.
    Are there any new treatments in the pipeline for this type of tumor? My son has battled this for almost ten years. First tumor was resected. Then, almost 7 years later, they found one in a ventricle and one in his spine. In the past 4 years, we have done temozolomide, radiation, avastin/carboplatin(for only a couple months-did not tolarate it well), and now another one. Is there not anything new that will target this type of tumor?

    PXA
    Given the rarity there are no specific treatments for a PXA that I am aware of. Think treatment more or less follows the same guidelines as any tumor of a similar grade. Some of the more exotic treatments (Vaccine, etc.) would potentially be applicable. I recently qualified for a vaccine trial but turned out that the new enhancement was necrosis.

    Read an article recently where gamma knife was utilized successfully in controlling a disseminated PXA for an extended period of time. May be worth checking on.
  • G.Mill
    G.Mill Member Posts: 2

    PXA
    Given the rarity there are no specific treatments for a PXA that I am aware of. Think treatment more or less follows the same guidelines as any tumor of a similar grade. Some of the more exotic treatments (Vaccine, etc.) would potentially be applicable. I recently qualified for a vaccine trial but turned out that the new enhancement was necrosis.

    Read an article recently where gamma knife was utilized successfully in controlling a disseminated PXA for an extended period of time. May be worth checking on.

    Thanks. I've been doing a
    Thanks. I've been doing a lot of reading on the Gamma Knife. Really getting scared. Son is almost 19 and I really hoped something would have worked by now.
  • huxley2006
    huxley2006 Member Posts: 27 Member
    G.Mill said:

    Thanks. I've been doing a
    Thanks. I've been doing a lot of reading on the Gamma Knife. Really getting scared. Son is almost 19 and I really hoped something would have worked by now.

    PXA
    Sorry for your situation.

    PXA (even the grade 3) due tend to be a bit less aggressive then some other types of brain tumors. Generally they are slow growing and less diffuse.
    You should try your best to get your son to a major brain tumor institution. Care there is generally better then at local hospitals. Utilize Doctors you are comfortable talking to. Learn as much as you can about the aliment and all potential treatment options. Doctors tend to talk at you in broad generalities unless you engage them on an equal a footing (as possible). Second and third onions are a good thing. The more experts you talk to the more knowledgeable you become and the better able you are to make important decisions. Below are some sites I have utilized that have been very helpful.

    http://www.virtualtrials.com/
    http://www.cancercompass.com/
    http://clinicaltrials.gov/
  • paulinna
    paulinna Member Posts: 1
    pxa
    Hello, I was diagnosed with this tumour in October 2006. It was situated in the right temporal lobe. I had a surgery and it was completely removed. Now I'm 21 years old and I'm fine.
  • cschade
    cschade Member Posts: 2
    pxa recurrence
    My husband had ear pain beginning in March of 2009 which never got better after treatment. On an CT of his ear in September, they caught what they thought was swelling in his brain. After an MRI of the brain, he was sent immediately to the ER as he had a plum sized tumor in his left temporal lobe (now we know it was a PXA). He was in the ICU for a few days and had surgery the day after the initial findings. They said that the tumor was fully encased and that it had been removed in its entirety.

    He had MRIs at 3-months post surgery, and then 6 months after that at 9 months post surgery. At that MRI they caught what they thought was a small bit of tumor that was missed. They did another MRI three months after that (a full year post surgery - 9/2010) and found that it was growing. They felt that removing the tumor would be too risky and began a very aggressive treatment of radiation (his hair still hasn't grown back after a year). At 9 months post radiation, just this past September of 2011, we finally saw that the tumor was beginning to shrink. We were elated.

    A month later, he noticed that he was having a tremendous amount of pain in his belly and that he was having trouble bending over. After a CT of the intestines and then another MRI of the spine and brain, we found out that it had 'seeded' or drop metastasized into his spine and he has lesions all through the thoracic and lumbar portions of his spine, pushing on the nerves and blood vessels leading to his intestines (hence the extreme constipation and pain). He was put on dexamethasone immediately, and has been being treated with a more broad form of radiation therapy for the entire spine over the past few weeks and has three treatments to go. The hope is that the spinal tumor cells will react the same way as the brain tumor, and that after 9 months we will see them begin to shrink.

    They never spoke of using chemotherapy drugs, even after the first tumor was found. They said that it was extremely slow growing (he was 29 when they found it.... much older than normal for a PXA), and that we shouldn't worry. Now, after the recurrence and the seeding, they are beginning to talk chemo. Avastin? They want to see how it goes, but I am not so sure. I guess after reading all of the posts, I am now worried about it moving elsewhere.
  • cschade
    cschade Member Posts: 2
    cschade said:

    pxa recurrence
    My husband had ear pain beginning in March of 2009 which never got better after treatment. On an CT of his ear in September, they caught what they thought was swelling in his brain. After an MRI of the brain, he was sent immediately to the ER as he had a plum sized tumor in his left temporal lobe (now we know it was a PXA). He was in the ICU for a few days and had surgery the day after the initial findings. They said that the tumor was fully encased and that it had been removed in its entirety.

    He had MRIs at 3-months post surgery, and then 6 months after that at 9 months post surgery. At that MRI they caught what they thought was a small bit of tumor that was missed. They did another MRI three months after that (a full year post surgery - 9/2010) and found that it was growing. They felt that removing the tumor would be too risky and began a very aggressive treatment of radiation (his hair still hasn't grown back after a year). At 9 months post radiation, just this past September of 2011, we finally saw that the tumor was beginning to shrink. We were elated.

    A month later, he noticed that he was having a tremendous amount of pain in his belly and that he was having trouble bending over. After a CT of the intestines and then another MRI of the spine and brain, we found out that it had 'seeded' or drop metastasized into his spine and he has lesions all through the thoracic and lumbar portions of his spine, pushing on the nerves and blood vessels leading to his intestines (hence the extreme constipation and pain). He was put on dexamethasone immediately, and has been being treated with a more broad form of radiation therapy for the entire spine over the past few weeks and has three treatments to go. The hope is that the spinal tumor cells will react the same way as the brain tumor, and that after 9 months we will see them begin to shrink.

    They never spoke of using chemotherapy drugs, even after the first tumor was found. They said that it was extremely slow growing (he was 29 when they found it.... much older than normal for a PXA), and that we shouldn't worry. Now, after the recurrence and the seeding, they are beginning to talk chemo. Avastin? They want to see how it goes, but I am not so sure. I guess after reading all of the posts, I am now worried about it moving elsewhere.

    update 4/2012
    I noticed that not very many people return to this posting, so it was hard for me to see what the outcomes were of any of the other PXA patients, which is why I wanted to be sure I reported back that my Frank passed away on Monday April 2. I am not sure what caused his tumor with basically no mitotic activity to grow and spread down the spine, but it is definitely what caused his death.

    If any of you ever want information on what we went through, what our doctors told us, or the progression of his disease please don't hesitate to contact me.
  • Lil moe
    Lil moe Member Posts: 6
    cschade said:

    update 4/2012
    I noticed that not very many people return to this posting, so it was hard for me to see what the outcomes were of any of the other PXA patients, which is why I wanted to be sure I reported back that my Frank passed away on Monday April 2. I am not sure what caused his tumor with basically no mitotic activity to grow and spread down the spine, but it is definitely what caused his death.

    If any of you ever want information on what we went through, what our doctors told us, or the progression of his disease please don't hesitate to contact me.

    PXA Tumor
    My name is Kim and my son was diagnosed was a brain tumor on 3/20/12. Yesterday the comfor. That it is a PXA tumor I really don't know about this tumor. they don't recommend chemotherapy I don't know what to do.The tumor was the size of a golf ball in the back of the left side of his head. He did had surgery but there is still a part of the tumor left in. Please help You can call 530 632 7777 thank you
  • audra pxa
    audra pxa Member Posts: 5
    Lil moe said:

    PXA Tumor
    My name is Kim and my son was diagnosed was a brain tumor on 3/20/12. Yesterday the comfor. That it is a PXA tumor I really don't know about this tumor. they don't recommend chemotherapy I don't know what to do.The tumor was the size of a golf ball in the back of the left side of his head. He did had surgery but there is still a part of the tumor left in. Please help You can call 530 632 7777 thank you

    Treatment
    Hey Kim~
    I really hope the best for your son. My suggestion would be to get a second opinion. You can read my previous posts and story above or at my caring bridge site....site name is : audra. My physicians suggest that when my tumor recurs they will treat it again with chemo. Unfortunately we are starting to see what appears like a 4th recurrence on my last scan. My doctor said because the tumor is so rare and no good studies have been done on it that they have to treat it like an astrocytoma..which is "most" like it. On my 2nd recurrence my tumor was partially resected and we did radiation at that time. Overall, I think they should be doing some sort of treatment for your son. So please seek out a second or even third opinion. Also comtinue with frequent MRI's. I get scanned every 3 months.
  • Lil moe
    Lil moe Member Posts: 6
    audra pxa said:

    Treatment
    Hey Kim~
    I really hope the best for your son. My suggestion would be to get a second opinion. You can read my previous posts and story above or at my caring bridge site....site name is : audra. My physicians suggest that when my tumor recurs they will treat it again with chemo. Unfortunately we are starting to see what appears like a 4th recurrence on my last scan. My doctor said because the tumor is so rare and no good studies have been done on it that they have to treat it like an astrocytoma..which is "most" like it. On my 2nd recurrence my tumor was partially resected and we did radiation at that time. Overall, I think they should be doing some sort of treatment for your son. So please seek out a second or even third opinion. Also comtinue with frequent MRI's. I get scanned every 3 months.

    PXA
    So my son is having another surgery June 4 so tomorrow. The dr. Said there was still more. This is so hard because it's only two months. It would be nice if we could talk over the phone my number was on the last post 530 632 7777
  • hj49
    hj49 Member Posts: 4
    cschade said:

    update 4/2012
    I noticed that not very many people return to this posting, so it was hard for me to see what the outcomes were of any of the other PXA patients, which is why I wanted to be sure I reported back that my Frank passed away on Monday April 2. I am not sure what caused his tumor with basically no mitotic activity to grow and spread down the spine, but it is definitely what caused his death.

    If any of you ever want information on what we went through, what our doctors told us, or the progression of his disease please don't hesitate to contact me.

    BRAIN TUMOR PXA III
    My son has Brain Tumor in Feb, 2005 at the age of 17 years.
    History :
    1. Brain Tumor in Left sub cortical parietal lobe detected in Oct. 2004
    2. Surgical resection in Feb.2005 – It was Fibrillary Astrocytoma Grade - I.
    3. Post operated MRI up to 12/04/2007, no recurrence seen.
    4. Recurrence in March 2011 (after 6 years). 2nd Surgical resection on April, 9, 2011. Histopathology Report: a. Anaplastic Pleomorphic Xanthoastrocytoma (WHO Grade III) AND b. Progression to Glioblastoma (WHO Grade IV). The former possibility is favoured.
    5. Tata Memorial Hospital, Mumbai, India has suggested Radiotherapy dose of 59.4 Gy./33 Tr. over 6-7 weeks and Chemotherapy with concomitant TMZ / Temozolomide @ 75 mg/m2.
    6. Accordingly, Radiation & Chemo course was completed between 26/05/2011 to 08/07/201 in Apollo Hospitals. No adjuvant temozolomide.
    7. He admitted in Apollo Hospital for K/c/o left FP SOL, Acute Gastritis and underwent symptomatic treatment on 09/11/2011.
    8. There is no recurrence in MRI up to Dt. 28/04/2012.
    9. Seizure in speech noticed on 11/08/2012.
    10.MRI Dt. 11/08/2012 suggest TUMOR RECURRENCE (3rd time after 16 months from 2nd resection) at the age of 24 years.
    Lesion measures: 12.9 x 7.6 mm in Axial plane, 9.3 x 12.5 mm in Coronal plane and 9.4 x 9.4 mm in Sagittal plane.

    Pls. guide me for further treatment and survival rate for this type of case.
    In all posts everybody is giving information up to survival of the patient but we should share complete details, their sufferings up to the death.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    hj49 said:

    BRAIN TUMOR PXA III
    My son has Brain Tumor in Feb, 2005 at the age of 17 years.
    History :
    1. Brain Tumor in Left sub cortical parietal lobe detected in Oct. 2004
    2. Surgical resection in Feb.2005 – It was Fibrillary Astrocytoma Grade - I.
    3. Post operated MRI up to 12/04/2007, no recurrence seen.
    4. Recurrence in March 2011 (after 6 years). 2nd Surgical resection on April, 9, 2011. Histopathology Report: a. Anaplastic Pleomorphic Xanthoastrocytoma (WHO Grade III) AND b. Progression to Glioblastoma (WHO Grade IV). The former possibility is favoured.
    5. Tata Memorial Hospital, Mumbai, India has suggested Radiotherapy dose of 59.4 Gy./33 Tr. over 6-7 weeks and Chemotherapy with concomitant TMZ / Temozolomide @ 75 mg/m2.
    6. Accordingly, Radiation & Chemo course was completed between 26/05/2011 to 08/07/201 in Apollo Hospitals. No adjuvant temozolomide.
    7. He admitted in Apollo Hospital for K/c/o left FP SOL, Acute Gastritis and underwent symptomatic treatment on 09/11/2011.
    8. There is no recurrence in MRI up to Dt. 28/04/2012.
    9. Seizure in speech noticed on 11/08/2012.
    10.MRI Dt. 11/08/2012 suggest TUMOR RECURRENCE (3rd time after 16 months from 2nd resection) at the age of 24 years.
    Lesion measures: 12.9 x 7.6 mm in Axial plane, 9.3 x 12.5 mm in Coronal plane and 9.4 x 9.4 mm in Sagittal plane.

    Pls. guide me for further treatment and survival rate for this type of case.
    In all posts everybody is giving information up to survival of the patient but we should share complete details, their sufferings up to the death.

    What it's like for us
    My son has a different type of brain tumor--an anaplastic oligodendroglioma (grade III) but I think some of the things we are experiencing may happen with other types of brain cancer. You can get an idea of what we are going through on the "Grief and Bereavement" board.
    Blessings and peace to you,
    Cindy in Salem, Oregon
  • huxley2006
    huxley2006 Member Posts: 27 Member
    Lil moe said:

    PXA Tumor
    My name is Kim and my son was diagnosed was a brain tumor on 3/20/12. Yesterday the comfor. That it is a PXA tumor I really don't know about this tumor. they don't recommend chemotherapy I don't know what to do.The tumor was the size of a golf ball in the back of the left side of his head. He did had surgery but there is still a part of the tumor left in. Please help You can call 530 632 7777 thank you

    PXA Tumor
    Hello Kim,

    I am a 19 year survivor of PXA. Had initial diagnosis in 1994 and recurrence as anaplastic PXA or GBM (depending on the path) in 07/2010. I went through several surgeries, radiation and the temador regiment. So far doing well and leading a very normal existence. Your posting was a while ago so not going to provide treatment advice but if you need additional input feel free to reach out to me via this site.

    Audra,

    Hello to you as well. I reached out to you several months ago and based on your most recent caring bridge post things seems like things are going better for you.

    Wayne
  • adrianav
    adrianav Member Posts: 9
    hj49 said:

    BRAIN TUMOR PXA III
    My son has Brain Tumor in Feb, 2005 at the age of 17 years.
    History :
    1. Brain Tumor in Left sub cortical parietal lobe detected in Oct. 2004
    2. Surgical resection in Feb.2005 – It was Fibrillary Astrocytoma Grade - I.
    3. Post operated MRI up to 12/04/2007, no recurrence seen.
    4. Recurrence in March 2011 (after 6 years). 2nd Surgical resection on April, 9, 2011. Histopathology Report: a. Anaplastic Pleomorphic Xanthoastrocytoma (WHO Grade III) AND b. Progression to Glioblastoma (WHO Grade IV). The former possibility is favoured.
    5. Tata Memorial Hospital, Mumbai, India has suggested Radiotherapy dose of 59.4 Gy./33 Tr. over 6-7 weeks and Chemotherapy with concomitant TMZ / Temozolomide @ 75 mg/m2.
    6. Accordingly, Radiation & Chemo course was completed between 26/05/2011 to 08/07/201 in Apollo Hospitals. No adjuvant temozolomide.
    7. He admitted in Apollo Hospital for K/c/o left FP SOL, Acute Gastritis and underwent symptomatic treatment on 09/11/2011.
    8. There is no recurrence in MRI up to Dt. 28/04/2012.
    9. Seizure in speech noticed on 11/08/2012.
    10.MRI Dt. 11/08/2012 suggest TUMOR RECURRENCE (3rd time after 16 months from 2nd resection) at the age of 24 years.
    Lesion measures: 12.9 x 7.6 mm in Axial plane, 9.3 x 12.5 mm in Coronal plane and 9.4 x 9.4 mm in Sagittal plane.

    Pls. guide me for further treatment and survival rate for this type of case.
    In all posts everybody is giving information up to survival of the patient but we should share complete details, their sufferings up to the death.

    PXA
    I started reading these posts back in 2009 when I was first diagnosed. I remember there were only a few and I would search frantically for more information on a PXA tumor. 3 years ago yesterday, my family found me having a seizure shortly after I had fallen asleep. The only symptoms that I recall prior to the seizure were headaches and fatigue. I was having difficulty waking up for class and I thought maybe I was just being lazy. I had no history of seizures and we had no idea what news we were about to receive. I was rushed to the hospital where they performed a CAT scan. Shortly after, a doctor came in to speak to me and he informed me that they found a lesion in my brain. I had a surgery the following week and I was told that I had "won the lottery" with the golf ball sized tumor I was diagnosed with. (PXA II) The surgeon told me the chances of the tumor coming back were almost none. I went on with my life, but they continued to order MRIs to monitor for any regrowth. I had an MRI of August 2011 and nothing was found. January of this year, I began having what I would describe as flashing lights in my vision and headaches all over again. I think I knew it was back but I had to put on a brave act for my family. I went in for another MRI and my neurologist never called me with results until a week later. He wanted me to go in ASAP to discuss the results. He told me the tumor was back and had almost filled up the cavity from before. I consulted with the prior neurosurgeon and he didn't seem to care or worry. He told me I could finish out the school semester and we would talk about surgery in May. I knew I needed a second opinion so I did some research and found MdAnderson in Houston. I flew in and met with Dr Conrad and Dr McCutcheon. They suggested surgery almost immediately but being from a town 9 hours away, I had to come back home and sort things out. So I went back a week later and had surgery. Dr Conrad told me I would need radiation because the tumor had grown back and no one expected it to. The tumor grade was changed to III and it was considered cancerous at this point. I completed 6 weeks of radiation and I'm going back to Houston this month to follow up. I hope this helped, I know it was a all over the place.
  • huxley2006
    huxley2006 Member Posts: 27 Member
    adrianav said:

    PXA
    I started reading these posts back in 2009 when I was first diagnosed. I remember there were only a few and I would search frantically for more information on a PXA tumor. 3 years ago yesterday, my family found me having a seizure shortly after I had fallen asleep. The only symptoms that I recall prior to the seizure were headaches and fatigue. I was having difficulty waking up for class and I thought maybe I was just being lazy. I had no history of seizures and we had no idea what news we were about to receive. I was rushed to the hospital where they performed a CAT scan. Shortly after, a doctor came in to speak to me and he informed me that they found a lesion in my brain. I had a surgery the following week and I was told that I had "won the lottery" with the golf ball sized tumor I was diagnosed with. (PXA II) The surgeon told me the chances of the tumor coming back were almost none. I went on with my life, but they continued to order MRIs to monitor for any regrowth. I had an MRI of August 2011 and nothing was found. January of this year, I began having what I would describe as flashing lights in my vision and headaches all over again. I think I knew it was back but I had to put on a brave act for my family. I went in for another MRI and my neurologist never called me with results until a week later. He wanted me to go in ASAP to discuss the results. He told me the tumor was back and had almost filled up the cavity from before. I consulted with the prior neurosurgeon and he didn't seem to care or worry. He told me I could finish out the school semester and we would talk about surgery in May. I knew I needed a second opinion so I did some research and found MdAnderson in Houston. I flew in and met with Dr Conrad and Dr McCutcheon. They suggested surgery almost immediately but being from a town 9 hours away, I had to come back home and sort things out. So I went back a week later and had surgery. Dr Conrad told me I would need radiation because the tumor had grown back and no one expected it to. The tumor grade was changed to III and it was considered cancerous at this point. I completed 6 weeks of radiation and I'm going back to Houston this month to follow up. I hope this helped, I know it was a all over the place.

    PXA
    Adrian,

    You story is very similar to my own with the exception of the timing. Mine was 17+ until recurrence. I am now 2 years plus since last resection. I think the prevailing wisdom right now is by in large they do come back (eventually) although not with the severity and speed of a standard malignant astrocytoma .

    You can reach out if you have any questions.

    Hux...
  • umcrn
    umcrn Member Posts: 22

    PXA
    Adrian,

    You story is very similar to my own with the exception of the timing. Mine was 17+ until recurrence. I am now 2 years plus since last resection. I think the prevailing wisdom right now is by in large they do come back (eventually) although not with the severity and speed of a standard malignant astrocytoma .

    You can reach out if you have any questions.

    Hux...

    My neurosurgeon said it
    My neurosurgeon said it would NEVER come back...but both my oncologists (medical & radiation), my pathologist & second opinion doctors from other hospitals have pretty much guaranteed it's return, we just don't know when. I'm coming up on my one year and I know my MRI's will start to get spaced out more which makes me nervous, especially since I have no idea how long it was growing previously before I started getting symptoms...guess I just have to really be paying attention to every little thing & try not to worry about it, can't waste my life away worrying
  • umcrn
    umcrn Member Posts: 22
    adrianav said:

    PXA
    I started reading these posts back in 2009 when I was first diagnosed. I remember there were only a few and I would search frantically for more information on a PXA tumor. 3 years ago yesterday, my family found me having a seizure shortly after I had fallen asleep. The only symptoms that I recall prior to the seizure were headaches and fatigue. I was having difficulty waking up for class and I thought maybe I was just being lazy. I had no history of seizures and we had no idea what news we were about to receive. I was rushed to the hospital where they performed a CAT scan. Shortly after, a doctor came in to speak to me and he informed me that they found a lesion in my brain. I had a surgery the following week and I was told that I had "won the lottery" with the golf ball sized tumor I was diagnosed with. (PXA II) The surgeon told me the chances of the tumor coming back were almost none. I went on with my life, but they continued to order MRIs to monitor for any regrowth. I had an MRI of August 2011 and nothing was found. January of this year, I began having what I would describe as flashing lights in my vision and headaches all over again. I think I knew it was back but I had to put on a brave act for my family. I went in for another MRI and my neurologist never called me with results until a week later. He wanted me to go in ASAP to discuss the results. He told me the tumor was back and had almost filled up the cavity from before. I consulted with the prior neurosurgeon and he didn't seem to care or worry. He told me I could finish out the school semester and we would talk about surgery in May. I knew I needed a second opinion so I did some research and found MdAnderson in Houston. I flew in and met with Dr Conrad and Dr McCutcheon. They suggested surgery almost immediately but being from a town 9 hours away, I had to come back home and sort things out. So I went back a week later and had surgery. Dr Conrad told me I would need radiation because the tumor had grown back and no one expected it to. The tumor grade was changed to III and it was considered cancerous at this point. I completed 6 weeks of radiation and I'm going back to Houston this month to follow up. I hope this helped, I know it was a all over the place.

    flashing lights was one of
    flashing lights was one of my symptoms too! Where was your tumor?
    Are you doing chemo as well or only radiation?
    Hope your follow up went well!
  • huxley2006
    huxley2006 Member Posts: 27 Member
    umcrn said:

    flashing lights was one of
    flashing lights was one of my symptoms too! Where was your tumor?
    Are you doing chemo as well or only radiation?
    Hope your follow up went well!

    PXA
    Mine was on the surface of the Brain on the Occipital lobe.
  • adrianav
    adrianav Member Posts: 9
    umcrn said:

    flashing lights was one of
    flashing lights was one of my symptoms too! Where was your tumor?
    Are you doing chemo as well or only radiation?
    Hope your follow up went well!

    Sorry getting back so late.
    Sorry getting back so late. My tumor was on the occipital lobe, but it had been there for quite some time and had begun scalloping into my skull. I have a check up on Monday, I will update when I get back from Houston :)
    -adriana
  • adrianav
    adrianav Member Posts: 9
    umcrn said:

    My neurosurgeon said it
    My neurosurgeon said it would NEVER come back...but both my oncologists (medical & radiation), my pathologist & second opinion doctors from other hospitals have pretty much guaranteed it's return, we just don't know when. I'm coming up on my one year and I know my MRI's will start to get spaced out more which makes me nervous, especially since I have no idea how long it was growing previously before I started getting symptoms...guess I just have to really be paying attention to every little thing & try not to worry about it, can't waste my life away worrying

    When they told me it
    When they told me it wouldn't grow back, I didn't really think much about it. Now, I'm constantly worrying even though I try to reassure myself that it won't grow quickly if at all. I didn't do any chemo because Dr. Conrad said it would not be effective. I hope radiation worked! Good luck
    -adriana
  • adrianav
    adrianav Member Posts: 9

    PXA
    Adrian,

    You story is very similar to my own with the exception of the timing. Mine was 17+ until recurrence. I am now 2 years plus since last resection. I think the prevailing wisdom right now is by in large they do come back (eventually) although not with the severity and speed of a standard malignant astrocytoma .

    You can reach out if you have any questions.

    Hux...

    I was told my the first
    I was told my the first neurosurgeon that it would never grow back and now that I've learned it does, I worry about it coming back again. After your surgery, did you ever feel like your normal self again?
    -adriana