Rare brain tumor....DIPG

tmfaubus

LeslieLand said:

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?

Treatment
I have not been to MD Anderson. My NO is/was Krean Fink in Dallas. She is a top rated Dr. MD Anderson had the same treatments and at this point they do not think there is anything they can do. I am going to ask them about proton therapy however.

LeslieLand

tmfaubus said:

Treatment
I have not been to MD Anderson. My NO is/was Krean Fink in Dallas. She is a top rated Dr. MD Anderson had the same treatments and at this point they do not think there is anything they can do. I am going to ask them about proton therapy however.

have you done any radiation
have you done any radiation before?

keeping you in my thoughts every day.

I_Promise

LeslieLand said:

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.

DCA
Hi Leslie,

I have looked into DCA for my sister (anaplastic astrocytoma diagnosed august 2011); her MRIs are stable but I want to increase her chances to have NO recurrence. I even got her case reviewed at Medicor (a clinic in Toronto -the only country in the world who will prescribe DCA and follow you medically). The side effects appears mild (numbness) but like anything unproven it is a bit scary. But the alternative -death- is unthinkable.

In the end we decided to add a second oral chemotherapy agent, Xeloda, to the Temodar. I had her tumor analysed and it showed that xeloda could provide some anti-tumor effects (normally xeloda is used for brain mets). The docs at medicor were honest and said that while she is on xeloda she would not be able to take the oral version of dca. But the IV DCA would be available and could be set up without having to go to Toronto. We are doing Xeloda for now, and she is tolerating it well. DCA is in the back of my mind.

Pontine glioma were part (or still are) of a clinical trial with synthetic GAA vaccine. The advantage is that surgery is not required. GAA are some of the most common antigens found on gliomas. Targeting them with the immune system makes sense to me. I am following their data.

I will send good thoughts to your husband. Please let us know how the DCA goes. I would be very interested.

Julia

LeslieLand

I_Promise said:

DCA
Hi Leslie,

I have looked into DCA for my sister (anaplastic astrocytoma diagnosed august 2011); her MRIs are stable but I want to increase her chances to have NO recurrence. I even got her case reviewed at Medicor (a clinic in Toronto -the only country in the world who will prescribe DCA and follow you medically). The side effects appears mild (numbness) but like anything unproven it is a bit scary. But the alternative -death- is unthinkable.

In the end we decided to add a second oral chemotherapy agent, Xeloda, to the Temodar. I had her tumor analysed and it showed that xeloda could provide some anti-tumor effects (normally xeloda is used for brain mets). The docs at medicor were honest and said that while she is on xeloda she would not be able to take the oral version of dca. But the IV DCA would be available and could be set up without having to go to Toronto. We are doing Xeloda for now, and she is tolerating it well. DCA is in the back of my mind.

Pontine glioma were part (or still are) of a clinical trial with synthetic GAA vaccine. The advantage is that surgery is not required. GAA are some of the most common antigens found on gliomas. Targeting them with the immune system makes sense to me. I am following their data.

I will send good thoughts to your husband. Please let us know how the DCA goes. I would be very interested.

Julia

Julia,
Do you have any
Julia,

Do you have any information on the GAA vaccine trials for pontine glioma? All I've found is for under 21 years.

DCA won't be an option for us until after we've gotten back to the mainland US. Even then... right now he's stable but we're having the docs at MDAnderson look into it with us.

Best of luck to your sister (and you). Keeping you in my thoughts, and please let me know how you're doing.

Leslie

I_Promise

LeslieLand said:

Julia,
Do you have any
Julia,

Do you have any information on the GAA vaccine trials for pontine glioma? All I've found is for under 21 years.

DCA won't be an option for us until after we've gotten back to the mainland US. Even then... right now he's stable but we're having the docs at MDAnderson look into it with us.

Best of luck to your sister (and you). Keeping you in my thoughts, and please let me know how you're doing.

Leslie

The centers are not recruiting
Dear Leslie,

I am going to call the investigators of these studies this week and see if I can have some preliminary results. I am glad your husband's disease is stable. My sister's is too; it gives us time to plan our next move.

Here is the info from the clinicaltrial.gov website. there are four clinical trials that I found with the GAA vaccine. Two are for the grade 2. The other two, one is for all types of gliomas, the other for the recurrent gliomas.

1) for all types of glioma:


Vaccine Therapy in Treating Patients With Malignant Glioma
This study is ongoing, but not recruiting participants.

First Received on February 8, 2008. Last Updated on June 17, 2011 History of Changes
Sponsor: University of California, Los Angeles
Collaborator: National Cancer Institute (NCI)
Information provided by: University of California, Los Angeles
ClinicalTrials.gov Identifier: NCT00612001
Purpose
RATIONALE: Vaccines made from peptides and a person's dendritic cells may help the body build an effective immune response to kill tumor cells.
PURPOSE: This phase I trial is studying the side effects and best dose of vaccine therapy in treating patients with malignant glioma.

Condition Intervention Phase
Brain and Central Nervous System Tumors
Biological: glioma-associated antigen peptide-pulsed autologous dendritic cell vaccine
Phase I




2) this is for recurrent glioma: (but using the GAA vaccine also):



Vaccination-Dendritic Cells With Peptides for Recurrent Malignant Gliomas
This study is ongoing, but not recruiting participants.

First Received on June 23, 2008. Last Updated on August 5, 2011 History of Changes
Sponsor: University of Pittsburgh
Information provided by: University of Pittsburgh
ClinicalTrials.gov Identifier: NCT00766753
Purpose
This is a single-institution Phase I/II study designed to evaluate the safety and induction of an immune response, and preliminary clinical response of vaccinations with Type-1 alpha-DCs (alpha-DC1) loaded with glioma-associated antigen (GAA) epitopes and administration of poly-ICLC in patients with recurrent malignant gliomas. Approximately 30 subjects will be enrolled in this study at UPMC/UPCI Hillman Cancer Center. The study participants in this trial will be HLA-A2 positive male or female adults over 18 years of age. The primary objective is to establish the safety of this approach. The endpoints will be to determine the maximum tolerated dose (MTD) of alpha-DC1 vaccines in combination with a fixed dose of poly-ICLC, using standard criteria and close clinical followups. The secondary objectives are 1) to assess the immunological response against GAAs in patients with recurrent malignant gliomas immunized with DCs loaded with GAA-derived peptides using enzyme-linked immuno-spot (ELISPOT), delayed-type hypersensitivity (DTH) and tetramer assays; and 2) to assess the preliminary anti-tumor clinical activity of the vaccines as measured by radiological response (MRI), overall survival, and 4- and 6-month progression-free survival (PFS).

Condition Intervention Phase
Malignant Glioma
Biological: Dendritic vaccine pulsed with multiple peptides
Biological: The first booster vaccine phase:
Biological: The second booster vaccine phase:
Phase I
Phase II


Knowledge is power. I will never give up.

Julia

LeslieLand

I_Promise said:

The centers are not recruiting
Dear Leslie,

I am going to call the investigators of these studies this week and see if I can have some preliminary results. I am glad your husband's disease is stable. My sister's is too; it gives us time to plan our next move.

Here is the info from the clinicaltrial.gov website. there are four clinical trials that I found with the GAA vaccine. Two are for the grade 2. The other two, one is for all types of gliomas, the other for the recurrent gliomas.

1) for all types of glioma:


Vaccine Therapy in Treating Patients With Malignant Glioma
This study is ongoing, but not recruiting participants.

First Received on February 8, 2008. Last Updated on June 17, 2011 History of Changes
Sponsor: University of California, Los Angeles
Collaborator: National Cancer Institute (NCI)
Information provided by: University of California, Los Angeles
ClinicalTrials.gov Identifier: NCT00612001
Purpose
RATIONALE: Vaccines made from peptides and a person's dendritic cells may help the body build an effective immune response to kill tumor cells.
PURPOSE: This phase I trial is studying the side effects and best dose of vaccine therapy in treating patients with malignant glioma.

Condition Intervention Phase
Brain and Central Nervous System Tumors
Biological: glioma-associated antigen peptide-pulsed autologous dendritic cell vaccine
Phase I




2) this is for recurrent glioma: (but using the GAA vaccine also):



Vaccination-Dendritic Cells With Peptides for Recurrent Malignant Gliomas
This study is ongoing, but not recruiting participants.

First Received on June 23, 2008. Last Updated on August 5, 2011 History of Changes
Sponsor: University of Pittsburgh
Information provided by: University of Pittsburgh
ClinicalTrials.gov Identifier: NCT00766753
Purpose
This is a single-institution Phase I/II study designed to evaluate the safety and induction of an immune response, and preliminary clinical response of vaccinations with Type-1 alpha-DCs (alpha-DC1) loaded with glioma-associated antigen (GAA) epitopes and administration of poly-ICLC in patients with recurrent malignant gliomas. Approximately 30 subjects will be enrolled in this study at UPMC/UPCI Hillman Cancer Center. The study participants in this trial will be HLA-A2 positive male or female adults over 18 years of age. The primary objective is to establish the safety of this approach. The endpoints will be to determine the maximum tolerated dose (MTD) of alpha-DC1 vaccines in combination with a fixed dose of poly-ICLC, using standard criteria and close clinical followups. The secondary objectives are 1) to assess the immunological response against GAAs in patients with recurrent malignant gliomas immunized with DCs loaded with GAA-derived peptides using enzyme-linked immuno-spot (ELISPOT), delayed-type hypersensitivity (DTH) and tetramer assays; and 2) to assess the preliminary anti-tumor clinical activity of the vaccines as measured by radiological response (MRI), overall survival, and 4- and 6-month progression-free survival (PFS).

Condition Intervention Phase
Malignant Glioma
Biological: Dendritic vaccine pulsed with multiple peptides
Biological: The first booster vaccine phase:
Biological: The second booster vaccine phase:
Phase I
Phase II


Knowledge is power. I will never give up.

Julia

Thanks, Julia. I'm glad
Thanks, Julia. I'm glad your sister's is stable now, too. Thanks for the info. I look at that site for trials all the time, don't remember the GAA ones. I think lately we had some new hope after reading on DCA and ruta 6.

Please let me know if you learn anything after making some calls!

Much aloha,
Leslie

LeslieLand

tmfaubus said:

Treatment
I have not been to MD Anderson. My NO is/was Krean Fink in Dallas. She is a top rated Dr. MD Anderson had the same treatments and at this point they do not think there is anything they can do. I am going to ask them about proton therapy however.

proton therapy?
Have you had the chance to ask about this? How are you doing? Keeping you in my thoughts...

trswenson

LeslieLand said:

Thanks, Julia. I'm glad
Thanks, Julia. I'm glad your sister's is stable now, too. Thanks for the info. I look at that site for trials all the time, don't remember the GAA ones. I think lately we had some new hope after reading on DCA and ruta 6.

Please let me know if you learn anything after making some calls!

Much aloha,
Leslie

My brother tmfaubus
Thank you for communicating with my brother Todd. He is losing his battle with the tumor. In final stages of life. He has requested the tumor to be studied by removing a section. He really wants to help someone else. We are all heart broken and hurting as we experience the end of his life. God bless you and your family.

LeslieLand

trswenson said:

My brother tmfaubus
Thank you for communicating with my brother Todd. He is losing his battle with the tumor. In final stages of life. He has requested the tumor to be studied by removing a section. He really wants to help someone else. We are all heart broken and hurting as we experience the end of his life. God bless you and your family.

trswenson,
I'm so deeply
trswenson,

I'm so deeply saddened and heart broken by your news of Todd. I have kept him in my thoughts every day. I thought it was wonderful how much he wanted to help others with this awful DIPG. My husband was diagnosed in January 2011 and Todd is the only other adult I've found in the US with this diagnosis. Wishing strength and peace to Todd, you and your family. Blessings to Todd and all of you.

Leslie

cindysuetoyou

trswenson said:

My brother tmfaubus
Thank you for communicating with my brother Todd. He is losing his battle with the tumor. In final stages of life. He has requested the tumor to be studied by removing a section. He really wants to help someone else. We are all heart broken and hurting as we experience the end of his life. God bless you and your family.

your brother
Dear trswenson,

I am so sorry and sick at heart to hear this about your brother. I kept hoping and praying that a new trial or treatment option would become available for him. I'm so sorry for the pain and suffering you are going through also. My prayers and thoughts are with you...may God give you strength, peace, and comfort.

Love and blessings,
Cindy

trswenson

LeslieLand said:

trswenson,
I'm so deeply
trswenson,

I'm so deeply saddened and heart broken by your news of Todd. I have kept him in my thoughts every day. I thought it was wonderful how much he wanted to help others with this awful DIPG. My husband was diagnosed in January 2011 and Todd is the only other adult I've found in the US with this diagnosis. Wishing strength and peace to Todd, you and your family. Blessings to Todd and all of you.

Leslie

Sorrow
Thank you so much for the condolences . Todd passed away Tuesday the 10th. They gave him 2 weeks at diagnosis and he lived 20 months . The end of his life was a slow decline until the last week when he literally plummeted . The insult at the end is the medical community in Dallas/Ft. Worth denied his request to study the tumor because it is so rare and he was over the age of 18. That response defies reason to me. I wish you and your family the best in your journey of this ordeal. Todd's suffering is over. I wish you love peace and grace.

LeslieLand

trswenson said:

Sorrow
Thank you so much for the condolences . Todd passed away Tuesday the 10th. They gave him 2 weeks at diagnosis and he lived 20 months . The end of his life was a slow decline until the last week when he literally plummeted . The insult at the end is the medical community in Dallas/Ft. Worth denied his request to study the tumor because it is so rare and he was over the age of 18. That response defies reason to me. I wish you and your family the best in your journey of this ordeal. Todd's suffering is over. I wish you love peace and grace.

That is quite the insult! I
That is quite the insult! I just don't even know what to say about that. In the few trials I've found for DIPG, the majority are only for patients aged 18 yrs or 21 yrs. I can understand them concentrating on the pediatric cases, but Todd was leaving them a GIFT to study his tumor. (I cannot stop shaking my head.)

I had not realized that they had only given him 2 weeks initially. He definitely was a strong man!

Thank you for your well wishes.

Take gentle care,
Leslie

trswenson

cindysuetoyou said:

your brother
Dear trswenson,

I am so sorry and sick at heart to hear this about your brother. I kept hoping and praying that a new trial or treatment option would become available for him. I'm so sorry for the pain and suffering you are going through also. My prayers and thoughts are with you...may God give you strength, peace, and comfort.

Love and blessings,
Cindy

Thank you for the kind
Thank you for the kind words. May God bless you and your family .

mighty6

trswenson said:

Thank you for the kind
Thank you for the kind words. May God bless you and your family .

your Dr.
I'm so sorry to heard that you have lost your brother! It is especially heart broken to hear that Dr. F rejected his final will to donate his tumor for further research. I have read a lot on clinical trials/research, I know they always have lots of limitation/requirements. I wish they can at least handle this better so it is not so hurtful for your brother and you...
Please take care.

-- Jane

sadinholland

mighty6 said:

your Dr.
I'm so sorry to heard that you have lost your brother! It is especially heart broken to hear that Dr. F rejected his final will to donate his tumor for further research. I have read a lot on clinical trials/research, I know they always have lots of limitation/requirements. I wish they can at least handle this better so it is not so hurtful for your brother and you...
Please take care.

-- Jane

I am sorry to hear that your
I am sorry to hear that your brother passed. It seemed he wanted to helped others as much as he could. May God bless you and strengthen you as you go on. I am sorry to his his last wish was not granted. It's a shame they did'nt see the benefit in what he was offering. Take care and God bless!

treeg66

I am a mother of a teenage son with DIPG
My son Cory was diagnosed at the age of 16 (Jan 31st 2011)Although he is not an adult, he still doesn't fall under the usual age group of 5-9. I decided to respond because there are clinical trials called CED (convection enhanced delivery) where they administer chemo directly into the tumor. It is done while in an MRI machine with a machine bolted to your head where the chemo goes in at a very slow rate through a Catheter. The procedure takes approx 12hrs. My son has had this procedure done twice, once in Dec and then again in Jan. He was only the 4th child to have it done and the 1st to have it done twice. The day before the infusion the doctor informed us that Cory's tumor was growing rapidly and they felt he only had a few weeks left. The parts of the tumor that they were able to reach with the infusion had since stopped growing but unfortunately they were not able to reach all of the tumor and we are doing home hospice with him now. He is such a courageous young man and actually said he would go through the procedure again if they were willing to do it. I am not sure if this procedure/clinical trial is open to adults but I figured I would mention it. In addition to that he was in a clinical trial of 33 treatments of beam radiation along with irenotecan & cetuximab which he made it through a little more than half the trial (about 17wks) before the tumor had regrowth. He then tried the clinical trial MK2206 for about a month but this had no affect at all. That was when we decided on the CED. I am not sure if this information will be helpful or not but I wanted to share.
Best of Luck & God Bless!
our family motto is "Never Give Up"

LeslieLand

treeg66 said:

I am a mother of a teenage son with DIPG
My son Cory was diagnosed at the age of 16 (Jan 31st 2011)Although he is not an adult, he still doesn't fall under the usual age group of 5-9. I decided to respond because there are clinical trials called CED (convection enhanced delivery) where they administer chemo directly into the tumor. It is done while in an MRI machine with a machine bolted to your head where the chemo goes in at a very slow rate through a Catheter. The procedure takes approx 12hrs. My son has had this procedure done twice, once in Dec and then again in Jan. He was only the 4th child to have it done and the 1st to have it done twice. The day before the infusion the doctor informed us that Cory's tumor was growing rapidly and they felt he only had a few weeks left. The parts of the tumor that they were able to reach with the infusion had since stopped growing but unfortunately they were not able to reach all of the tumor and we are doing home hospice with him now. He is such a courageous young man and actually said he would go through the procedure again if they were willing to do it. I am not sure if this procedure/clinical trial is open to adults but I figured I would mention it. In addition to that he was in a clinical trial of 33 treatments of beam radiation along with irenotecan & cetuximab which he made it through a little more than half the trial (about 17wks) before the tumor had regrowth. He then tried the clinical trial MK2206 for about a month but this had no affect at all. That was when we decided on the CED. I am not sure if this information will be helpful or not but I wanted to share.
Best of Luck & God Bless!
our family motto is "Never Give Up"

Thank you for sharing. I'm
Thank you for sharing. I'm so sorry about your son's diagnosis. May I ask where he is doing the CED?

I will be keeping you and Cory in my thoughts. Sending strength to your family.

Leslie

trswenson

treeg66 said:

I am a mother of a teenage son with DIPG
My son Cory was diagnosed at the age of 16 (Jan 31st 2011)Although he is not an adult, he still doesn't fall under the usual age group of 5-9. I decided to respond because there are clinical trials called CED (convection enhanced delivery) where they administer chemo directly into the tumor. It is done while in an MRI machine with a machine bolted to your head where the chemo goes in at a very slow rate through a Catheter. The procedure takes approx 12hrs. My son has had this procedure done twice, once in Dec and then again in Jan. He was only the 4th child to have it done and the 1st to have it done twice. The day before the infusion the doctor informed us that Cory's tumor was growing rapidly and they felt he only had a few weeks left. The parts of the tumor that they were able to reach with the infusion had since stopped growing but unfortunately they were not able to reach all of the tumor and we are doing home hospice with him now. He is such a courageous young man and actually said he would go through the procedure again if they were willing to do it. I am not sure if this procedure/clinical trial is open to adults but I figured I would mention it. In addition to that he was in a clinical trial of 33 treatments of beam radiation along with irenotecan & cetuximab which he made it through a little more than half the trial (about 17wks) before the tumor had regrowth. He then tried the clinical trial MK2206 for about a month but this had no affect at all. That was when we decided on the CED. I am not sure if this information will be helpful or not but I wanted to share.
Best of Luck & God Bless!
our family motto is "Never Give Up"

---
God bless your family. Praying for you. Never give up.

trswenson

LeslieLand said:

Thank you for sharing. I'm
Thank you for sharing. I'm so sorry about your son's diagnosis. May I ask where he is doing the CED?

I will be keeping you and Cory in my thoughts. Sending strength to your family.

Leslie

hi
Just wondering how you are doing? We are still having very rough days.

erics.smth

I was diagnosed Nov 18 2002,
I was diagnosed Nov 18 2002, with DIPG. I was 22, the Docs said 50/50 chance. fast forward and My docs tell me they do not understand why I am still alive. Less than 1/4% of Adult survive longer than five years. Yet here we are, I did 10mos of concurrent Chemo (Temedar) and radiation. No change, for the better or worse. They just don't know, and that's what startles me. I get yearly check ups now. Although I am a little worried about 2wks ago started having double vision and difficulty swallowing, along with head and neck discomfort at the base of my head. Got an appointment for next week. May God bless you all and keep you close wrapped in his arms. I thought that I was alone glad to see someone else is out there.