Rare brain tumor....DIPG

Sammiesdad said:

DIPG

Any body still in this discussion board?  I have been following for sometime, but didn't need treatment until now.  The monster woke up.

 Would like to talk.

Thanks

Hi

I was diagnosed June 17, 2008. Symptoms: lack of balance and blurry vision. Treatment, about to start not sure jet. I still feel good but the past MRI's have shown some progression. I have appointment with Dr. Olivi at Hopkings next week. I have been doing prety good, the only new thing is tinnitus, it's driving me crazy. There are few other things I am doing, to keep myself sane. The problem with our condition is that DPg are really rare. In my case CT/MRI confirm circulation and high glucose metabolism But it's not growing and I don't feel that bad. Keep it up, there is no certainty with this type of tumor, they have a mind of their own. 

Feel free to contact me, I can tell you what I am doing to maintain control on my situation.

cindysuetoyou said:

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

you have remind me to ask about something i've heard about, which is treating that disease type with "a new molecular therapy that uses targeted peptides and proteins to restore cellular function". i remember that i've read about it some where but not very sure if any body else can give me further information!

i've already did a Google search for the term "Peptide treatment", and found a company by the name "Regenerative Cellular Therapy". i would ask you to do the same and tell me if you have more results than i had!
please any help about that!!

LeslieLand said:

How are you? How did your
How are you? How did your appointments go? Keeping you in my thoughts...

Hope your husband is still well! 

davgan said:

DIPG in young adults

Hi Everyone, sorry for joining this thread so late.

I have just been diagnosed with a DIPG, I am 31 years old.

They said surgery is not an option, and they have started radiation and chemo to buy me time. I am looking for another option, anything, ruta 6? I have changed my diet, eating alot more healthy now, no more junk food. What is everyone elses experience?

Please let me know,

Thank you everyone

Dave

My 22-year-old daughter was diagnosed with DIPG in mid-April 2015, had a surgical biopsy to confirm and was started on intra-arterial chemotherapy (once every 4 weeks) plus Avastin. They do monthly MRIs and have said as long as the tumor stays the same size or shrinks, she can continue with this treatment -- but if the tumor grows, she has to stop intra-arterial chemotherapy and make a choice about whether to try radiation or just let things take their natural course. She's had 2 monthly chemo treatments so far and the tumor hasn't shrunk but it hasn't grown either. They said that's not unexpected, but they do hope to see it shrink in the next 1-3 months.

We live in Oregon and tried doing the cannabis extract oil (AKA Simpson oil) but she found the taste of it unbearable so she stopped. None of the doctors will give me any time frame on how long my daughter has; all the information I have is from what I've been able to research online. My best guess is somewhere between 1-9 months. She's already on so much decadron that I'm afraid she will catch a viral pneumonia or the flu and die from that because her immune system is so depressed.

Any advice or feedback is appreciated.

JeanneNacl said:

My 22-year-old daughter was

My 22-year-old daughter was diagnosed with DIPG in mid-April 2015, had a surgical biopsy to confirm and was started on intra-arterial chemotherapy (once every 4 weeks) plus Avastin. They do monthly MRIs and have said as long as the tumor stays the same size or shrinks, she can continue with this treatment -- but if the tumor grows, she has to stop intra-arterial chemotherapy and make a choice about whether to try radiation or just let things take their natural course. She's had 2 monthly chemo treatments so far and the tumor hasn't shrunk but it hasn't grown either. They said that's not unexpected, but they do hope to see it shrink in the next 1-3 months.

We live in Oregon and tried doing the cannabis extract oil (AKA Simpson oil) but she found the taste of it unbearable so she stopped. None of the doctors will give me any time frame on how long my daughter has; all the information I have is from what I've been able to research online. My best guess is somewhere between 1-9 months. She's already on so much decadron that I'm afraid she will catch a viral pneumonia or the flu and die from that because her immune system is so depressed.

Any advice or feedback is appreciated.

hi Jeanne.  avastin is the drug that we were told we will try after radiation in 3 weeks. our team says it is not covered by insurance most likely and will cost $100,000 for a year. They are also still debating on dosage. Obviously, they have never  tried it before. Of course, we are willing to try anything that we provide stability and hope. Never heard of Simpson oil. We were also told no possibility of a biopsy, too risky. Our prognosis is 18 months. Did they ever recommend radiation for you?

JeanneNacl said:

My 22-year-old daughter was

My 22-year-old daughter was diagnosed with DIPG in mid-April 2015, had a surgical biopsy to confirm and was started on intra-arterial chemotherapy (once every 4 weeks) plus Avastin. They do monthly MRIs and have said as long as the tumor stays the same size or shrinks, she can continue with this treatment -- but if the tumor grows, she has to stop intra-arterial chemotherapy and make a choice about whether to try radiation or just let things take their natural course. She's had 2 monthly chemo treatments so far and the tumor hasn't shrunk but it hasn't grown either. They said that's not unexpected, but they do hope to see it shrink in the next 1-3 months.

We live in Oregon and tried doing the cannabis extract oil (AKA Simpson oil) but she found the taste of it unbearable so she stopped. None of the doctors will give me any time frame on how long my daughter has; all the information I have is from what I've been able to research online. My best guess is somewhere between 1-9 months. She's already on so much decadron that I'm afraid she will catch a viral pneumonia or the flu and die from that because her immune system is so depressed.

Any advice or feedback is appreciated.

Hi again, I spoke with my son's doctor today.  He asked if I could find out what hospital you daughter is at and who is treating her.  We are facing some obstacles getting approval to use avastin for treatment from the hospital administration. Your input would be very helpful.  Thank you. 

Kjam3610 said:

Adult DIPG

Hello, my 22 yr. old son was diagnosed a month ago with DIPG. He is being treated at Cleveland Clinic, Ohio. His treatment of IMRT radiation started on June 18th. He goes 5 days a week for 6 weeks. He is also getting shots of chemo 2 days a week. it is called bortizimab. Once this is finished, we are looking to try a new option with immunology. I don't have all the details, but I can update as I get More information.  It is pending insurance approval. Is anyone out there familiar with this treatment?  We are open to any other options that are available. His prognosis is dim; 1-2 yrs.  

Thank you for all the feedback so far.  My best to all that share this struggle with us.  

Hello Kjam and all,

My wife 42 was dianosed with DIPG on July 3, 2015.  We have just finished 6 weeks of radiation treatment.  Symptoms so far a double vision, slight imbalance, slight numbness.  Our next chapter is trying to boost her immune system with integrative medicine.  I am looking for any other options or trials that anyone has heard of.  All feedback is welcome and I am so sorry to hear of anyone that has this.  Rob

JeanneNacl said:

My 22-year-old daughter was

My 22-year-old daughter was diagnosed with DIPG in mid-April 2015, had a surgical biopsy to confirm and was started on intra-arterial chemotherapy (once every 4 weeks) plus Avastin. They do monthly MRIs and have said as long as the tumor stays the same size or shrinks, she can continue with this treatment -- but if the tumor grows, she has to stop intra-arterial chemotherapy and make a choice about whether to try radiation or just let things take their natural course. She's had 2 monthly chemo treatments so far and the tumor hasn't shrunk but it hasn't grown either. They said that's not unexpected, but they do hope to see it shrink in the next 1-3 months.

We live in Oregon and tried doing the cannabis extract oil (AKA Simpson oil) but she found the taste of it unbearable so she stopped. None of the doctors will give me any time frame on how long my daughter has; all the information I have is from what I've been able to research online. My best guess is somewhere between 1-9 months. She's already on so much decadron that I'm afraid she will catch a viral pneumonia or the flu and die from that because her immune system is so depressed.

Any advice or feedback is appreciated.

My sister is also diagnosed with the same using simpson oil 

Kjam3610 said:

available to discuss if you are

hi, my son, age 22, was diagnosed 6 weeks ago. I am available to discuss our situation. 

Can you update with the current situation please 

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.

Hi Leslie needed your help can you Reply whenever u get time