Rare brain tumor....DIPG

tmfaubus
tmfaubus Member Posts: 23
I am looking for other adults who have been diagnosed with a DIPG (diffuse intrinsic pontine glioma )
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  • tmfaubus
    tmfaubus Member Posts: 23
    Diffuse intrinsic pontine glioma
    Anybody out there besides me ??
  • tmfaubus
    tmfaubus Member Posts: 23
    DIPG
    Seriously....nobody out there in cyberspace has ever dealt with this ?
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    tmfaubus said:

    DIPG
    Seriously....nobody out there in cyberspace has ever dealt with this ?

    haven't dealt with this
    Hi, tmfaubus.

    I haven't known anyone who has had this kind of tumor. I hadn't ever heard of it, but I tried to learn about it by doing an internet search. I hope that you aren't annoyed and you don't feel like I am wasting your time by responding when I know next to nothing about your situation, but I hated that no one responded and I didn't want you to feel like none of us cared. I think that probably most people on this site would love to help you but don't know much about DIPG. And I think this is a very rare tumor for an adult to have.

    I wonder if you could ask your oncologist to put you in touch with other adults that have DIPG? One of the first things our oncologist asked us when my son was first diagnosed was did he want to talk to other young men who were also battling brain cancer.

    Also, you might try the people at an American Cancer Society office near you. Maybe Lance Armstrong's foundation, LIVESTRONG could connect you to someone with DIPG? I'm just trying to think of some way that you could find some adults who know what you are going through. I'm really sorry that you didn't find any real help on this site.

    Please post on this site again and let us know how you are doing. I will be thinking of you and praying for you too.

    Love and blessings,
    Cindy
  • tmfaubus
    tmfaubus Member Posts: 23

    haven't dealt with this
    Hi, tmfaubus.

    I haven't known anyone who has had this kind of tumor. I hadn't ever heard of it, but I tried to learn about it by doing an internet search. I hope that you aren't annoyed and you don't feel like I am wasting your time by responding when I know next to nothing about your situation, but I hated that no one responded and I didn't want you to feel like none of us cared. I think that probably most people on this site would love to help you but don't know much about DIPG. And I think this is a very rare tumor for an adult to have.

    I wonder if you could ask your oncologist to put you in touch with other adults that have DIPG? One of the first things our oncologist asked us when my son was first diagnosed was did he want to talk to other young men who were also battling brain cancer.

    Also, you might try the people at an American Cancer Society office near you. Maybe Lance Armstrong's foundation, LIVESTRONG could connect you to someone with DIPG? I'm just trying to think of some way that you could find some adults who know what you are going through. I'm really sorry that you didn't find any real help on this site.

    Please post on this site again and let us know how you are doing. I will be thinking of you and praying for you too.

    Love and blessings,
    Cindy

    Hi
    No worries. I just think it's crazy I have such a rare tumor for an adult. There are kids whose parents are dealing with it but no adults. I still keep searching though. Thanks for the post...I will see ya on the message boards.
  • LeslieLand
    LeslieLand Member Posts: 49
    tmfaubus said:

    Hi
    No worries. I just think it's crazy I have such a rare tumor for an adult. There are kids whose parents are dealing with it but no adults. I still keep searching though. Thanks for the post...I will see ya on the message boards.

    hi
    My husband was dx'ed with diffuse intrinsic pontine glioma in January 2011. He was 33 when diagnosed. He did radiation treatment at MD Anderson in Houston in Feb/Mar/Apr last year (28 treatments). He appears to be somewhat stable right now, and is getting MRIs done every 3 months at this point.

    It IS hard to find other adults with this! I went through Imerman Angels and was connected to a young lady in Canada who was also diagnosed with this. It's 12 years later for her now :)
  • tmfaubus
    tmfaubus Member Posts: 23

    hi
    My husband was dx'ed with diffuse intrinsic pontine glioma in January 2011. He was 33 when diagnosed. He did radiation treatment at MD Anderson in Houston in Feb/Mar/Apr last year (28 treatments). He appears to be somewhat stable right now, and is getting MRIs done every 3 months at this point.

    It IS hard to find other adults with this! I went through Imerman Angels and was connected to a young lady in Canada who was also diagnosed with this. It's 12 years later for her now :)

    Hi
    Nice to hear from you. My last MRI in January showed tumor regrowth. I had been doing avastin/carbopltin treatments since October. Needless to say I have been very depressed. When your NO says go do anything you have wanted to do it shakes you. I was dx'd 9/10...Here it is 2/12. So far all I can say is I am not dead yet. Symptoms are another thing...
  • LeslieLand
    LeslieLand Member Posts: 49
    tmfaubus said:

    Hi
    Nice to hear from you. My last MRI in January showed tumor regrowth. I had been doing avastin/carbopltin treatments since October. Needless to say I have been very depressed. When your NO says go do anything you have wanted to do it shakes you. I was dx'd 9/10...Here it is 2/12. So far all I can say is I am not dead yet. Symptoms are another thing...

    May I ask what your original

    May I ask what your original symptoms were, and for how long before being diagnosed? did you do any radiation treatments?

    I will be keeping you in my thoughts.
  • tmfaubus
    tmfaubus Member Posts: 23

    May I ask what your original

    May I ask what your original symptoms were, and for how long before being diagnosed? did you do any radiation treatments?

    I will be keeping you in my thoughts.

    Symptoms
    It started with a small catch in the corner of my right eye, a tendency to veer left when walking, trouble swallowing bread, and a headache at the base of my skull. One day at work I was just overwhelmed and called my doctor. He suggested emergency room and MRI. Bam...there it was. That was 9/01/10. I had radiation until 10/22/10, then Temodar until 9/06/11 (no response BTW) and lastly was avastin and carboplatin from 10/11 until 1/10/12. I had some shrinkage early on with avastin but my tumor seems to have become immune to it and is growing again, I am not really sure how long I have. There you have it. Anything you want to know ask away..Even if I can help one other person it's great.
  • LeslieLand
    LeslieLand Member Posts: 49
    tmfaubus said:

    Symptoms
    It started with a small catch in the corner of my right eye, a tendency to veer left when walking, trouble swallowing bread, and a headache at the base of my skull. One day at work I was just overwhelmed and called my doctor. He suggested emergency room and MRI. Bam...there it was. That was 9/01/10. I had radiation until 10/22/10, then Temodar until 9/06/11 (no response BTW) and lastly was avastin and carboplatin from 10/11 until 1/10/12. I had some shrinkage early on with avastin but my tumor seems to have become immune to it and is growing again, I am not really sure how long I have. There you have it. Anything you want to know ask away..Even if I can help one other person it's great.

    Have your symptoms returned?
    Have your symptoms returned? Your headaches sound very similar to what my husband was (is) having. They thought they were exertion headaches at first, but the flight surgeon sent him for an MRI to rule out anything bad and there it was. (He was a pilot in the USAF.) He's still getting headaches, but we really don't know how much is from the cancer and how much is from the radiation. Since the radiation, he cannot lie down on his back because it will immediately trigger a headache on the base/back of his head. We are so fortunate that he doesn't have any other symptoms right now, but since what they saw on the MRI appears to be the entire pons, they've pretty much told him that he'll know if it's growing before any new pictures are taken.

    I'm sure you can understand the desire to grasp for anything that may possibly help. Have you tried any alternative treatments? I want my husband to try acupuncture- I figure it can't hurt! And we've also modified our diets drastically, to a more primal/paleo diet, especially cutting out sugars and grains. Aside from the **** cancer, he's been really healthy. Even with me and our almost 3 year old daughter getting pretty sick a few times in the past year.

    Thanks again for communicating with me. I will continue to keep you in my thoughts.
  • tmfaubus
    tmfaubus Member Posts: 23

    Have your symptoms returned?
    Have your symptoms returned? Your headaches sound very similar to what my husband was (is) having. They thought they were exertion headaches at first, but the flight surgeon sent him for an MRI to rule out anything bad and there it was. (He was a pilot in the USAF.) He's still getting headaches, but we really don't know how much is from the cancer and how much is from the radiation. Since the radiation, he cannot lie down on his back because it will immediately trigger a headache on the base/back of his head. We are so fortunate that he doesn't have any other symptoms right now, but since what they saw on the MRI appears to be the entire pons, they've pretty much told him that he'll know if it's growing before any new pictures are taken.

    I'm sure you can understand the desire to grasp for anything that may possibly help. Have you tried any alternative treatments? I want my husband to try acupuncture- I figure it can't hurt! And we've also modified our diets drastically, to a more primal/paleo diet, especially cutting out sugars and grains. Aside from the **** cancer, he's been really healthy. Even with me and our almost 3 year old daughter getting pretty sick a few times in the past year.

    Thanks again for communicating with me. I will continue to keep you in my thoughts.

    My symptoms have never really went away. They have just worsened over time. I worked from 2/11 until 10/11, even driving. About the beginning of September 11 my right side got weaker...Little stuff like eating and brushing my teeth got difficult with my right hand. Since then my right side has become basically useless. I still have a little but very limited use. My facial numbness is all over the place. Some days my tongue is numb to the point I can barely eat. I am weak and dizzy all the time either from all the chemo or tumor growth, not sure which. Lastly but most worrisome is what seems to be mass effect from swelling. It makes it seem like everything is coming at you overwhelming your senses. I am not trying to scare you guys but be prepared to fight. As far as alternative treatments you might as well...There does not seem to be any surgical options and chemo is hit or miss..Keep in touch.
  • I_Promise
    I_Promise Member Posts: 218 Member
    tmfaubus said:

    My symptoms have never really went away. They have just worsened over time. I worked from 2/11 until 10/11, even driving. About the beginning of September 11 my right side got weaker...Little stuff like eating and brushing my teeth got difficult with my right hand. Since then my right side has become basically useless. I still have a little but very limited use. My facial numbness is all over the place. Some days my tongue is numb to the point I can barely eat. I am weak and dizzy all the time either from all the chemo or tumor growth, not sure which. Lastly but most worrisome is what seems to be mass effect from swelling. It makes it seem like everything is coming at you overwhelming your senses. I am not trying to scare you guys but be prepared to fight. As far as alternative treatments you might as well...There does not seem to be any surgical options and chemo is hit or miss..Keep in touch.

    vaccine or oncolytic trial?
    Dear tmfaubus,

    You seem to say that your disease is progressing on chemo; have you thought of a vaccine trial (like GAA synthetic ) or an oncolytic virus trial (like adenovirus, NVD, herpes, or polio)? Just a thought.

    I am so sorry about your disease and your symptoms.

    J.
  • tmfaubus
    tmfaubus Member Posts: 23
    I_Promise said:

    vaccine or oncolytic trial?
    Dear tmfaubus,

    You seem to say that your disease is progressing on chemo; have you thought of a vaccine trial (like GAA synthetic ) or an oncolytic virus trial (like adenovirus, NVD, herpes, or polio)? Just a thought.

    I am so sorry about your disease and your symptoms.

    J.

    Vaccine
    Yes my tumor did progress while on chemo..My NO is one of the best in the nation and the vaccine will not be effective. There are no clinical trials, no new studies. Thank you for the thought but there is just nothing out there.
  • LeslieLand
    LeslieLand Member Posts: 49
    tmfaubus said:

    Vaccine
    Yes my tumor did progress while on chemo..My NO is one of the best in the nation and the vaccine will not be effective. There are no clinical trials, no new studies. Thank you for the thought but there is just nothing out there.

    Thanks for the warning. The
    Thanks for the warning. The docs we see are very...conservative in what they tell us. I get it that they just can't know how any individual will react to treatments and how fast this cancer will progress, so thanks for the heads up.

    Where do you look for clinical trials? I've seen a few on NCI for adults with DIPG. Some of them look completely scary...but I guess when there aren't any other options...
  • tmfaubus
    tmfaubus Member Posts: 23

    Thanks for the warning. The
    Thanks for the warning. The docs we see are very...conservative in what they tell us. I get it that they just can't know how any individual will react to treatments and how fast this cancer will progress, so thanks for the heads up.

    Where do you look for clinical trials? I've seen a few on NCI for adults with DIPG. Some of them look completely scary...but I guess when there aren't any other options...

    Scary
    This whole thing is and has been scary, weird, and almost unreal...
  • Aimeesmom
    Aimeesmom Member Posts: 1
    Rare brain tumor....DIPG
    tmfaubus,

    I'm sorry I've never responded to you via the DIPG network...DIPG's are most common in children between the age of 5-9. The survival rate once diagnosed is between 12-18 months. There are approximately 200-300 children diagnosed each year with DIPG.
    My daughter Aimee was DX at 11, in 2007 which is uncommon and battled for 14 months before she past at the age of 12. At the time of her DX she was in a very small group (about 5) that were above the age of 9 that I am aware of. Since then many more into their teens/adults have been DX. I've also become aware of children being DX while still in the womb...

    DIPG in adults is extremely rare. I only know of 4 cases where adults between 30-50 have been diagnosed in the last 2 years. Sadly, there is not much information available about DIPG in children or adults. However, the treatment options for adults far better then that in children. Since there is not much information, or known cases of DIPG in adults, I can not offer you statistic's on survival. I do know that since my daughter's diagnosis in 2007, DIPG has now been effecting all ages from birth through adulthood. I know that some say there are survivor's of DIPG, but in many of those cases, partial removal of the tumor occurred and/or a biopsy was able to be done since some of the tumor was outside the pontine. Therefore, giving the doctor's the ability to determine if in fact it is a DIPG and not something else. DIPG are most commonly diagnosed based on MRI's only...

    Since DIPG (diffuse intrinsic pontine glioma) are located inside the pontine or center of the brain stem surgery in most cases is not an option. Not even a biopsy can be done to determine what exactly the tumor is. Also, there is nothing that can break through the blood brain barrier (the brain's way to protect itself) As of today and since many of us parents have donated our children's tumor's to research now are they starting to figure out what this tumor is. However, I do feel that the genetic and/or molecular biology is very different between children and adults. Considering in most cases children that are diagnosed haven't even hit puberty so that in itself will change the biology of the tumor. I've been told over and over again that there is no cause, and this just happens, something triggers it...Not an answer I'm welling to accept.

    Through my daughter's foundation I focus more on WHY she got sick, in the hope's of finding the possible cause and a way to stop it sooner then later or preventing it all together. I think genetic's plays a part in the growth, but I feel the environment, and many of our electronic's also are a major contributor. Aimee felt that you can't cure something if you don't know what it is or why it's there... Even studying the tumors after death in most cases will not give a true reading since the tumors are altered by chemo and radiation.

    I'm sorry I can't offer you more information. Please, know that I will keep you in my prayers, and try my best to find out more for you. I will also see if those others that I am aware of will contact you. Sadly, one of them recently past at the beginning of the year. He was in his early 40's.
  • tmfaubus
    tmfaubus Member Posts: 23
    Aimeesmom said:

    Rare brain tumor....DIPG
    tmfaubus,

    I'm sorry I've never responded to you via the DIPG network...DIPG's are most common in children between the age of 5-9. The survival rate once diagnosed is between 12-18 months. There are approximately 200-300 children diagnosed each year with DIPG.
    My daughter Aimee was DX at 11, in 2007 which is uncommon and battled for 14 months before she past at the age of 12. At the time of her DX she was in a very small group (about 5) that were above the age of 9 that I am aware of. Since then many more into their teens/adults have been DX. I've also become aware of children being DX while still in the womb...

    DIPG in adults is extremely rare. I only know of 4 cases where adults between 30-50 have been diagnosed in the last 2 years. Sadly, there is not much information available about DIPG in children or adults. However, the treatment options for adults far better then that in children. Since there is not much information, or known cases of DIPG in adults, I can not offer you statistic's on survival. I do know that since my daughter's diagnosis in 2007, DIPG has now been effecting all ages from birth through adulthood. I know that some say there are survivor's of DIPG, but in many of those cases, partial removal of the tumor occurred and/or a biopsy was able to be done since some of the tumor was outside the pontine. Therefore, giving the doctor's the ability to determine if in fact it is a DIPG and not something else. DIPG are most commonly diagnosed based on MRI's only...

    Since DIPG (diffuse intrinsic pontine glioma) are located inside the pontine or center of the brain stem surgery in most cases is not an option. Not even a biopsy can be done to determine what exactly the tumor is. Also, there is nothing that can break through the blood brain barrier (the brain's way to protect itself) As of today and since many of us parents have donated our children's tumor's to research now are they starting to figure out what this tumor is. However, I do feel that the genetic and/or molecular biology is very different between children and adults. Considering in most cases children that are diagnosed haven't even hit puberty so that in itself will change the biology of the tumor. I've been told over and over again that there is no cause, and this just happens, something triggers it...Not an answer I'm welling to accept.

    Through my daughter's foundation I focus more on WHY she got sick, in the hope's of finding the possible cause and a way to stop it sooner then later or preventing it all together. I think genetic's plays a part in the growth, but I feel the environment, and many of our electronic's also are a major contributor. Aimee felt that you can't cure something if you don't know what it is or why it's there... Even studying the tumors after death in most cases will not give a true reading since the tumors are altered by chemo and radiation.

    I'm sorry I can't offer you more information. Please, know that I will keep you in my prayers, and try my best to find out more for you. I will also see if those others that I am aware of will contact you. Sadly, one of them recently past at the beginning of the year. He was in his early 40's.

    Thanks
    I am in late stage dealing with this. Not much left...
  • LeslieLand
    LeslieLand Member Posts: 49
    tmfaubus said:

    Thanks
    I am in late stage dealing with this. Not much left...

    grasping...
    My husband was just reading a few days ago about DCA and the trials they are doing at the University of Alberta. It has actually given him (us) some new hope. He even contacted his docs about it. (We live in HI but he sees docs at MD Anderson in Houston, TX.) We will be moving to KS in a few months to be closer to all of his family, and I know he's already thinking about Alberta. Have you read anything on these trials yet?
  • LeslieLand
    LeslieLand Member Posts: 49
    Aimeesmom said:

    Rare brain tumor....DIPG
    tmfaubus,

    I'm sorry I've never responded to you via the DIPG network...DIPG's are most common in children between the age of 5-9. The survival rate once diagnosed is between 12-18 months. There are approximately 200-300 children diagnosed each year with DIPG.
    My daughter Aimee was DX at 11, in 2007 which is uncommon and battled for 14 months before she past at the age of 12. At the time of her DX she was in a very small group (about 5) that were above the age of 9 that I am aware of. Since then many more into their teens/adults have been DX. I've also become aware of children being DX while still in the womb...

    DIPG in adults is extremely rare. I only know of 4 cases where adults between 30-50 have been diagnosed in the last 2 years. Sadly, there is not much information available about DIPG in children or adults. However, the treatment options for adults far better then that in children. Since there is not much information, or known cases of DIPG in adults, I can not offer you statistic's on survival. I do know that since my daughter's diagnosis in 2007, DIPG has now been effecting all ages from birth through adulthood. I know that some say there are survivor's of DIPG, but in many of those cases, partial removal of the tumor occurred and/or a biopsy was able to be done since some of the tumor was outside the pontine. Therefore, giving the doctor's the ability to determine if in fact it is a DIPG and not something else. DIPG are most commonly diagnosed based on MRI's only...

    Since DIPG (diffuse intrinsic pontine glioma) are located inside the pontine or center of the brain stem surgery in most cases is not an option. Not even a biopsy can be done to determine what exactly the tumor is. Also, there is nothing that can break through the blood brain barrier (the brain's way to protect itself) As of today and since many of us parents have donated our children's tumor's to research now are they starting to figure out what this tumor is. However, I do feel that the genetic and/or molecular biology is very different between children and adults. Considering in most cases children that are diagnosed haven't even hit puberty so that in itself will change the biology of the tumor. I've been told over and over again that there is no cause, and this just happens, something triggers it...Not an answer I'm welling to accept.

    Through my daughter's foundation I focus more on WHY she got sick, in the hope's of finding the possible cause and a way to stop it sooner then later or preventing it all together. I think genetic's plays a part in the growth, but I feel the environment, and many of our electronic's also are a major contributor. Aimee felt that you can't cure something if you don't know what it is or why it's there... Even studying the tumors after death in most cases will not give a true reading since the tumors are altered by chemo and radiation.

    I'm sorry I can't offer you more information. Please, know that I will keep you in my prayers, and try my best to find out more for you. I will also see if those others that I am aware of will contact you. Sadly, one of them recently past at the beginning of the year. He was in his early 40's.

    sorry
    Aimeesmom, I'm so sorry for your loss. It is absolutely devastating to see all the children going through the hell this disease causes. My husband was diagnosed in Jan. 2011 at the age of 33. Every morning when we'd go in for his radiation, we would see the kids/babies...made me cry so many times and make me hug our daughter a little harder every day. I'm so scared that genetics has something to do with this- our daughter will be 3 next month...

    I would be very interested to "talk" to any of the other adults you know who have DIPG. I've met one young lady through Imerman Angels who was dx'ed as pediatric (I believe she was 17?) and that was 12 years ago. But as my husband says, hers isn't the same because her tumor was also outside the pons and she was able to have a partial resection. And the poor girl is now dealing with osteosarcoma- totally unrelated, so her docs say.

    Our docs in TX told us of one other man who was dx'ed at about the same time, but he opted for a biopsy and did not survive the surgery.
  • tmfaubus
    tmfaubus Member Posts: 23

    grasping...
    My husband was just reading a few days ago about DCA and the trials they are doing at the University of Alberta. It has actually given him (us) some new hope. He even contacted his docs about it. (We live in HI but he sees docs at MD Anderson in Houston, TX.) We will be moving to KS in a few months to be closer to all of his family, and I know he's already thinking about Alberta. Have you read anything on these trials yet?

    Treatment
    What type of treatment regiman does MD Anderson have you on ? My latest was Carboplatin and Avastin.
  • LeslieLand
    LeslieLand Member Posts: 49
    tmfaubus said:

    Treatment
    What type of treatment regiman does MD Anderson have you on ? My latest was Carboplatin and Avastin.

    treatment
    My husband did 28 treatments of IGRT/IMRT last Feb-Apr. He's gone from MRIs every 2 months to every 3 months right now. Talks of temodar later in the future if the cancer starts progressing, as it appears stable right now.

    We're both really looking into the DCA trials in Alberta and Ruta 6.

    May I ask which docs you were seeing at MDA?