Our 19 yr old has GBM IV

GBM_Momma19

We're seeking contact with other parents of young adults dealing with this disease.

Our 19 year old son came home from first semester at college with odd symptoms. Biopsy in January: Inoperable GBM in left temporal lobe extending into the insular capsule and downward toward the brain stem that "appears aggressive." He had 42 days of Temodar and 33 fractionated doses of radiation. Follow up MRI showed tumor had grown by about 30%. We felt such shock that conventional treatment didn't have the expected effect. He recently completed his 4th cycle of Avastin and Irinotecan with follow up MRI this coming Monday and results appointment Wednesday. We can hardly put into words how we're feeling right now; it's hard to breath, let alone sleep.

Anyone else dealing with issues like these?

micgrace

contact
My total and full sympathy.

My wife is pretty young as well. Grace was studying a degree at uni when it hit. I still can't get over it. Its so completely pointless and random. And conventional let alone any other treatment only buys time alive. It really sucks.

connsteele

parent of GBM
I truly feel your pain, as our son, who is 34, also has GBM. He had surgery on April 18, and only enough tissue was removed to get a biopsy. He is currently midway through radiation and Temodar treatment. However, since he started radiation, he has really declined, especially re: gait, fine motor, and speech. Last week, the docs were concerned that maybe it was tumor progression rather than radiation induced. They doubled his Decadron to 24 mg a day, and we did see some improvement so they're thinking it's radiation. However, I'm wondering: did your son develop worse symptoms on radiation? If so, did they improve once he was through with radiation?

As I said, I know how you feel. As a parent, it's agonizing to not be able to make things better for your child. Our son is single and lives alone, so we are his primary caretakers. He can't be left alone as he falls when he tries to walk to the bathroom, etc. We are dealing with severe depression as well. He sees no reason to even get out of bed. This is so heartbraking.

We are staying with him in his apartment in Washington DC to help him get through this, but live in Ohio. Unless there is major improvement, we can't ever see him living alone so at some point he will have to move back home with us, which won't go over well at all. Everyday is a challenge. Hope things are improving for you.

DJEvans

Am so sorry you are going through this!!
I also have been looking for teens or young adults who have been diagnosed with this, and believe me they are HARD to find!

My 15 year old son was diagnosed on June 23rd. He had been having severe headaches and nausea for a couple of months that were orginally diagnosed as Migraines/Vertigo. Finally after a trip to the emergency room, the ER Dr. insisted that we get an MRI. The results of the MRI came back on the morning of June 16th, and by 1:00 that afternoon we were at the Neuro Surgeons office being admitted to the ICU to have an external tube put in to relieve the pressure on his brain. On June 17th, they did Brain surgery to remove the tumor. But they were not able to get it all. There is still a spot in his left temporal lobe as well as some in his Brain Stem which is inoperable.

He just finished the same "1st" treatment as your son, 42 days of Temodar and 33 doses of radiation. He actually handled the first round of treatments very well, up until the last 3 day "boost" of radiation, and he has been sick for the last two weeks.

We are now on a 4 week break before we do another MRI and start the next round of chemo. The Dr's have given us options on what treatments we want to do. Either 1) Temodar only (28 day cycle), 2) Temodar plus Avastin, or 3) Temodar, Avastin, and Irinotecan. We are just starting the research of these treatments and their effects. I would LOVE to chat with you about how your son has handled the chemo cycles with the Avastin and Irinotecan.

I can tell you that our Docs are telling us not to get too concerned if we see no shrinkage or even growth on this first MRI after the first round of treatments. They already had warned us about the possibility of "pseudo growth" that is caused by the combo of Temodar with Radiation and it is not a long term effect. It is almost always temporary, but they told us about it because of where my son's tumor is in the Brain Stem, even the pseudo growth could cause long term or fatal consequences. The main thing is that his headaches have subsided almost completely, so I feel that has got to be showing some progress.

I have set up a Caring Bridge site for my son which pretty much journals our experience to date. If you are interested in looking at it, it is www.caringbridge.org/visit/djevans. And as I said, I would love to talk further to you about your experiences. It has been so hard to find people with young adults in the same situation. I would also like to be able to have some experiences to share with my son with someone more his age that is going through this. I think he is feeling very lonely right now and that no one really gets what he is going through.....right so! It doesn't help that he is stuck at home all day and cannot go to school. Please feel free to email me at lilwhit83@gmail.com. (Sorry, originally get my email addy confused...)

I am certainly adding your son and your family to my Postive Thoughts and Prayers!! From one GBM Momma to another, I know how hard this is!!

Chris Evans (Mother of DJ Evans)

micgrace

I am so sorry that you have
I am so sorry that you have to go through this. I lost my wife at age 42 to a GBM. What a horrible disease. Nothing seems to hold it in check for long.

patriciam

DJEvans said:

Am so sorry you are going through this!!
I also have been looking for teens or young adults who have been diagnosed with this, and believe me they are HARD to find!

My 15 year old son was diagnosed on June 23rd. He had been having severe headaches and nausea for a couple of months that were orginally diagnosed as Migraines/Vertigo. Finally after a trip to the emergency room, the ER Dr. insisted that we get an MRI. The results of the MRI came back on the morning of June 16th, and by 1:00 that afternoon we were at the Neuro Surgeons office being admitted to the ICU to have an external tube put in to relieve the pressure on his brain. On June 17th, they did Brain surgery to remove the tumor. But they were not able to get it all. There is still a spot in his left temporal lobe as well as some in his Brain Stem which is inoperable.

He just finished the same "1st" treatment as your son, 42 days of Temodar and 33 doses of radiation. He actually handled the first round of treatments very well, up until the last 3 day "boost" of radiation, and he has been sick for the last two weeks.

We are now on a 4 week break before we do another MRI and start the next round of chemo. The Dr's have given us options on what treatments we want to do. Either 1) Temodar only (28 day cycle), 2) Temodar plus Avastin, or 3) Temodar, Avastin, and Irinotecan. We are just starting the research of these treatments and their effects. I would LOVE to chat with you about how your son has handled the chemo cycles with the Avastin and Irinotecan.

I can tell you that our Docs are telling us not to get too concerned if we see no shrinkage or even growth on this first MRI after the first round of treatments. They already had warned us about the possibility of "pseudo growth" that is caused by the combo of Temodar with Radiation and it is not a long term effect. It is almost always temporary, but they told us about it because of where my son's tumor is in the Brain Stem, even the pseudo growth could cause long term or fatal consequences. The main thing is that his headaches have subsided almost completely, so I feel that has got to be showing some progress.

I have set up a Caring Bridge site for my son which pretty much journals our experience to date. If you are interested in looking at it, it is www.caringbridge.org/visit/djevans. And as I said, I would love to talk further to you about your experiences. It has been so hard to find people with young adults in the same situation. I would also like to be able to have some experiences to share with my son with someone more his age that is going through this. I think he is feeling very lonely right now and that no one really gets what he is going through.....right so! It doesn't help that he is stuck at home all day and cannot go to school. Please feel free to email me at lilwhit83@gmail.com. (Sorry, originally get my email addy confused...)

I am certainly adding your son and your family to my Postive Thoughts and Prayers!! From one GBM Momma to another, I know how hard this is!!

Chris Evans (Mother of DJ Evans)

AA3
I am so sorry you are going through this, my 19 year old daughter had AA3, which is treated like a GBM. If you want to talk, you can email me. So sorry.

DJEvans

patriciam said:

AA3
I am so sorry you are going through this, my 19 year old daughter had AA3, which is treated like a GBM. If you want to talk, you can email me. So sorry.

Thank You
I would like to talk. Don't know your email address, but please email me at lilwhit83@gmail.com.

I_Promise

DJEvans said:

Am so sorry you are going through this!!
I also have been looking for teens or young adults who have been diagnosed with this, and believe me they are HARD to find!

My 15 year old son was diagnosed on June 23rd. He had been having severe headaches and nausea for a couple of months that were orginally diagnosed as Migraines/Vertigo. Finally after a trip to the emergency room, the ER Dr. insisted that we get an MRI. The results of the MRI came back on the morning of June 16th, and by 1:00 that afternoon we were at the Neuro Surgeons office being admitted to the ICU to have an external tube put in to relieve the pressure on his brain. On June 17th, they did Brain surgery to remove the tumor. But they were not able to get it all. There is still a spot in his left temporal lobe as well as some in his Brain Stem which is inoperable.

He just finished the same "1st" treatment as your son, 42 days of Temodar and 33 doses of radiation. He actually handled the first round of treatments very well, up until the last 3 day "boost" of radiation, and he has been sick for the last two weeks.

We are now on a 4 week break before we do another MRI and start the next round of chemo. The Dr's have given us options on what treatments we want to do. Either 1) Temodar only (28 day cycle), 2) Temodar plus Avastin, or 3) Temodar, Avastin, and Irinotecan. We are just starting the research of these treatments and their effects. I would LOVE to chat with you about how your son has handled the chemo cycles with the Avastin and Irinotecan.

I can tell you that our Docs are telling us not to get too concerned if we see no shrinkage or even growth on this first MRI after the first round of treatments. They already had warned us about the possibility of "pseudo growth" that is caused by the combo of Temodar with Radiation and it is not a long term effect. It is almost always temporary, but they told us about it because of where my son's tumor is in the Brain Stem, even the pseudo growth could cause long term or fatal consequences. The main thing is that his headaches have subsided almost completely, so I feel that has got to be showing some progress.

I have set up a Caring Bridge site for my son which pretty much journals our experience to date. If you are interested in looking at it, it is www.caringbridge.org/visit/djevans. And as I said, I would love to talk further to you about your experiences. It has been so hard to find people with young adults in the same situation. I would also like to be able to have some experiences to share with my son with someone more his age that is going through this. I think he is feeling very lonely right now and that no one really gets what he is going through.....right so! It doesn't help that he is stuck at home all day and cannot go to school. Please feel free to email me at lilwhit83@gmail.com. (Sorry, originally get my email addy confused...)

I am certainly adding your son and your family to my Postive Thoughts and Prayers!! From one GBM Momma to another, I know how hard this is!!

Chris Evans (Mother of DJ Evans)

I read all your blog at caring bridge
My heart goes to you and your son. Please keep us update.
Love,

Julia