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Rare brain tumor....DIPG

tmfaubus
Posts: 23
Joined: Jan 2012

I am looking for other adults who have been diagnosed with a DIPG (diffuse intrinsic pontine glioma )

erics.smth
Posts: 4
Joined: May 2012

My tumor has started to grow again, and also have two new little friends. I have an appointment today for the Neuro oncologist and monday a second doctor as a second opinion. I am praying you please pray for me to.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

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

Kutcha
Posts: 1
Joined: Jun 2015

Hope your husband is still well! 

Kjam3610
Posts: 7
Joined: Jun 2015

hi, just wondering what your situation is. My son was only diagnosd a month ago. 

erics.smth
Posts: 4
Joined: May 2012

My tumor has started to grow again, and also have two new little friends. I have an appointment today for the Neuro oncologist and monday a second doctor as a second opinion. I am praying you please pray for me to.

erics.smth
Posts: 4
Joined: May 2012

Well the Tumor has started growing, rather agreeively. We have started reirradtion, Chemo and another infusion therapy called Avastin. only on #4 rad and #6 chemo, and avastin #1 but tings are going well so far. Some of the symmptoms have reduced with the steriods only to wait and see if they get better. This is going to kill me and I know this. we are throwing the sink here in order to get as much time as possible maybe a year. There is no knowing what will happen. Remember that you are not alone and to ask lots of questions before acting on anything and to always no matter what take care of your family first. may
God bless and keep you all.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Eric,

Oh no. I was so hoping to hear better news. How much radiation are you scheduled to do?

I've had quite a few people ask me if we've considered seeing Dr. Burzynski? Just curious what your thoughts are on him/that clinic.

We've also started using essential oils - a brain cancer protocol. It can't hurt, right? We also ordered some Ruta 6, but haven't started it yet. I think my husband is getting ready to start throwing everything at this damned cancer. He had a headache yesterday- the bad kind at base of skull, and I know it bothered him. He's not scheduled for another check up/mri until August.

I will be keeping you in my thoughts and sending all the healing thoughts and light out into the universe for you. Please keep in touch, and know that I'm here.

Take gentle care,
Leslie

HopefulSister
Posts: 1
Joined: Oct 2012

My brother was diagnosed 11/11. He was given radiation combined with temador. He had some what clean scans and in 8/12 it showed some reduction in the tumor. The following month he started to get symptoms and his scan this month showed new growth. They are starting him on avastin with ceenu. I was wondering how your husband was doing? We are hopeful that this will work but worried about the side effects. I was looking into Ruta 6. Have you been able to try it? I appreciate any info or support. Your husband is in my prayers!

princesspurple
Posts: 6
Joined: Jul 2012

I'm so sorry to hear it's back. Just wanted to let you know your post re: hitting the nearly 10 year mark without progression brought me a lot of hope. Thanks so much for sharing. You are definitely not alone. I was diagnosed at 25, that was back in 2008. Am curious, are you considering any further treatment/trials at this stage?
Thinking of you during this difficult time.
Best.

ajaysingh's picture
ajaysingh
Posts: 9
Joined: May 2016

Hi can you reply me my sister is diagnosed with a dipg too

danishguy40
Posts: 3
Joined: Jul 2012

i have never heard of the type of condition you have or had but i am sorry that u have had to go through such a difficult time.i was told i had a brain tumor on my right side about three years ago everyday life seems to be a struggle now but i hope that you are well god speed brother

LONDON_FD
Posts: 1
Joined: Apr 2013

Hi I was diagnosed February 21, 2007 at 20 years old and given a year to live.  I have undergone 2 months of radiation and several stints of chemotherapy (Temodar).  It has started growing twice before and I gained a "little buddy" in Sept. 2011 that has since stablized.

I initially started out with excrutiating pain in my legs when I would lie down which had all my doctors believing it was a pinched nerve, a million tests later, the MRI that was supposed to last 20 minutes, instead took 2 hours, revealed my DIPG.

I currently am having double vision (for more than a year), terrible balance, , head pressure, scratchy voice/trouble breathing/speaking, choking issues, numbess in my face and tongue, hearing loss in my right ear, dry mouth and terrible dizziness.

I receive scans every 3 months and my last one (March of this year) showed no new growth so we're unsure why I am having such severe symptoms (more severe than symptoms at date of dignosis even). 

I am going to MD Anderson next week to seek help there.

Does anyone have any suggestions?  Particularly for the double vision? 

Any help would be greatly appreciated and if I can help anyone with their fight please don't hesitate to ask =)

-LONDON-

Sammiesdad
Posts: 9
Joined: Sep 2013

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

Sammiesdad
Posts: 9
Joined: Sep 2013

Surely someone is still out there, really need to talk with others.

Thanks

mccindy
Posts: 81
Joined: Jun 2013

Hi Sammiesdad, I don't have the same type of tumor that you have. I do have a brain tumor, however, and if you need someone to talk to, I'd be happy to listen and help in any way I can. 

Sammiesdad
Posts: 9
Joined: Sep 2013

Thank you so much, I'm sorry you're dealing with this also.

 

I am really looking for others who have similar disease for symptoms, treatment, n/o etc.

 

I'll certainly keep you in mind.  It's hard for others to know what we are dealing with

Thanks

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Sammiesdad,  I changed the email I have associated with this board so I'll get messages in a more timely fashion. I'm sorry your symptoms are progessing...makes my heart so heavy.  I'm happy to talk to you.  May I ask where about you live?

Sammiesdad
Posts: 9
Joined: Sep 2013

Hey Leslie, I am close the Nashville, TN.  I sent you an email reply, still trying to get oriented to the site and how to post discussions vs emails, etc.

I really appreciate speaking with you and your husband as it looks like I'm headed for scary times.  Hopefully you received my email and we can speak more.

Thanks so much and hope you guys are ok. 

 

Willy7717
Posts: 1
Joined: Jan 2014

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.

GULLFRIENDLY
Posts: 2
Joined: Jan 2015

Hi Willy7717         

The post I am commenting on is just a little over a year old..........you were about to find out about treatment in the post.  I hope it has gone well for you. 

I am the mom of a 19 year old that was diagnosed after a period of balance and vision issues.  In Novermber (2014) she had a biobpsy and although I do not remember the exact wording the ciculation part sticks in my mind.  However, I wanted to ask about the glucose metabolism mentioned.  How is it that that was tested/indicated? 

Tomorrow is my duaghters last day of a 6 week round of radiation, no chemo at this time, I am interested in reaching out to yourself and of course others that would be available to discuss their expereince with dipg.

Regards......

 

Kjam3610
Posts: 7
Joined: Jun 2015

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

ajaysingh's picture
ajaysingh
Posts: 9
Joined: May 2016

Can you update with the current situation please 

davgan
Posts: 1
Joined: May 2015

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

Kjam3610
Posts: 7
Joined: Jun 2015

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.  

Kurob421
Posts: 3
Joined: Jul 2015

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

ajaysingh's picture
ajaysingh
Posts: 9
Joined: May 2016

Hi can you reply me back my sister age 22 is going through the same problem of dipg 

JeanneNacl
Posts: 1
Joined: Jul 2015

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.

Kjam3610
Posts: 7
Joined: Jun 2015

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?

Kjam3610
Posts: 7
Joined: Jun 2015

 

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. 

ajaysingh's picture
ajaysingh
Posts: 9
Joined: May 2016

My sister is also diagnosed with the same using simpson oil 

Kjam3610
Posts: 7
Joined: Jun 2015

please see my comments. Hope it helps. I am also interested I the treatments others are experiencing or planning on trying. 

ajaysingh's picture
ajaysingh
Posts: 9
Joined: May 2016

Hi my sister has been diagnosed with the same 

 

ampbaron
Posts: 2
Joined: Feb 2017

I was orignally diagnosed at 40 yrs in June 2001, every symptom very quickly. The MRI confirmed the tumor surrounded by blood vessels, about 1cm right in the middle of my brain stem. Split vision, horrible headaches, numb face, loss of hearing in right ear. We immedately tried steroids, Acyclovier, Norvasc, pretty much anything as the prognosis was bad and I was crashing fast.

After about a month and barely functioning, I said to my Dr., if I concentrate for about 45 minutes at a spot on the wall, I can get my eyes to align. That was as long as I dont close them for a short period of time other than blinking.

I was getting MRI's about every 5-7 days. the tumor had stopped growing, to this day  is still there symptoms are down to about 20%, still bad headaches but I will be happy to live this way. Just had an MRI in December and it is still visable but not changing and the surrounding blood vessels are not present.

Jesslynn
Posts: 1
Joined: Apr 2017

so my journey is literally 24 hours old. I'm not even quite sure what my husband is officiially diagnosed with, and if I am in the right thread, but it being rare and the sympatoms others are having matches up. He has been complaining of being a little off balance and the right side of his mouth and cheek numb. We did an MRI yesterday and was told he had a tumor in the pons and that's it. We now have a referral to to teaching hospital like Stanford or UC San Francisco who would be of better help. We will be meeting this week. If anyone can help guide me I would appreciate it all. I don't even know where to begin.

 

jess

bay area, California 

ampbaron
Posts: 2
Joined: Feb 2017

Hi Jess,

My symptions started about 4am. I was in Las Vegas. I got up from bed to go to the bathroom. I was way of balance, had i been drinking I would have blamed that, but i hadn't drank anything. When waking up later that morning, my face was numb on the right side and tingly. Initial thoughts were Bells Palsy and maybe an inner ear infection. As that day progressed, my right foot/leg began to do what it wanted. Walking was strange as my foot would kick outward, leg was rubbery feeling.

By the evening the intensity of the symptoms were progressing, my hearing was becoming less in my right ear. I was convinced to go to the ER. upon listing my symptoms, the ER Dr. was thinking I was having a stroke, took me in immedately for a CAT scam. Nothing showed, they wanted to keep me but I said I was going home the next morning and would address it there.

Walking was becoming worse as well as balance. Riding in the car was bad at best. Sea sick is the best way to put it. I could drive as that way my brain knew when turns or swerves were coming, being a passenger left no control.

Got home and had an appointment the following morning. Thats when the headaches started. upon seeing the Dr, she innitially agreed with inner ear infection and the inflamination was causing the other symptoms. She perscribed medication, but before I could get to the Pharmacy she called (she did a little research after I left) me and said I had an MRI scheduled in one hour and an appt with a Neurologist the following morning.

 

Worsening headaches over the weekend and vision began to split high low. Also senses and nerve issues began to change. I lost taste, the air I breathed in felt like -40F, teeth on the right side were freezing out of my mouth and anything but warm or hot liquids gave me "ice cream brain freeze".

The following monday is when I got the DIPG or MS diagnosis. The symptoms increased over the next few weeks, now couldn't walk due to balance problems without being helped, hypersensitivity was painful, headaches were 9 1/2 out of 10. After several weeks and lots of MRI', about 3 a week watching this tumor or lesion grow and surrounded by blood vessels, I said to my Dr., if I really concentrate for a long time I can get my eyes to align. Her statement was that that was great, because with Cancer, you don't get things back.

Things continued to get better over the following year, and anything after 18 months is perminent, but thats OK.

 

 

 

 

 

 

 

 

 

Hope this helps a little 

 

jenabell11
Posts: 3
Joined: Oct 2017

Hi Jess. My husband is 35 and was diagnosed with a Diffuse Midline Glioma H3K27M in June. It is a gioma in the pons. Appeared Grade II but due to the pathology after a biopsy the H3K27M confirmed it to be biologically higher grade. Wondering how your husband is doing and where your journey has taken you so far. My husband went through proton radiation and is now on avastin.

Lbixler
Posts: 2
Joined: Oct 2017

A very good friend of mibe, almost like a son was just diagnosed at 38.  i can not find much information regarding this in audults.  Any information you could share would be wonderful.

 

Lori

Lbixler
Posts: 2
Joined: Oct 2017

Hello Eric, I hope this email finds you well.  A good friend of mine, like a sone to me was just diagnosed at 38 years of age.  I can't find much about this in adults so any informations you could share would be greatly appreciated.

 

Lori

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