Rare brain tumor....DIPG

princesspurple said:

I'm so sorry to hear it's
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.

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

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 said:

My journey just started

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 

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 

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

jenabell11 said:

husband with pons glioma

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.

jenabell11 my 56 year old husband also has been diagnosed in Nov. of 2016. First discovered tumor. august of 2016.  Have had radiation and chemo (temador).  Did 2. Rounds of avastin and tumor had grown.  Declined further treatment.  What symptoms did your husband have?  His is in the thalamus and is inoperable.  Any in would be greatly appreciated!