-
picking up that puppy
Forgot to mention that David received a letter a few days ago from our NO saying that he thought a puppy would help David deal with the "distress and and discomfort" of chemo. It couldn't have been a better letter if I had personally dictated it myself. David has no idea what went into getting that letter. No point in…
-
CDX110 phase 3 for GBM & Gliosarcoma is now open!
Hi, all, Just want to bring this good news to all GBM patients: http://www.clinicaltrials.gov/ct2/show/NCT01480479?term=cdx110&rank=2 Phase III Study of Rindopepimut/GM-CSF in Patients With Newly Diagnosed Glioblastoma (ACT IV) This study is currently recruiting participants. Verified on November 2011 by Celldex…
-
Need Doctor Recommendation in Colorado Area ASAP!
Hello All, I’m new to this forum and helping my wife’s son researching his condition. He is a soldier stationed at Ft. Carson, Colorado. He is 36 years old and in excellent health until yesterday. He recently passed out while walking to his car to go to work. He met with an Army doctor who prescribed an MRI and referred…
-
Web site listing stats re: brain tumor treatment centers
I just stumbled on this web page, listed on the National Brain Tumor Society's web site. You can click on a state and it lists hospitals with neuro-oncology departments and gives stats about them, as in number of surgeries performed a year, type of imaging technology available, etc. I thought it might be helpful for those…
-
Stage 3 Brain Cancer
My best friend had brain surgery to remove a tumor that was the size of a softball from his frontal lobe. Tney just got the test results back today and they said it was a stage 3 and that they are going to start radiation next week, followed by chemotherapy. If anyone here has had this, or knows someone who has.. let me…
-
Momsworld--how was your daughter's surgery?
I thought of her all day on the 22nd and I hope it went well. I'm sure you are very busy but when you get some time I hope you can tell us how she is. Hugs and blessings to you and your little girl.
-
Astrocytoma grade 2 but very large
My husband has just been diagnosed with an Astrocytoma grade 2, large tumor in left frontal, small in right frontal. He had a seizure - no other symptoms leading up to this. This was 4 weeks ago. He has just started eating, still cannot walk or stand. Right side of his body is very compromised. We are going to the…
-
clival chordoma
has anyone on here ever heard of this or no anything about it??
-
Entire right side feeling tingly and numb, but...
Hi everyone! So, I went to my neurosurgeon after my mri last week and he said that it was better than he has seen in a couple of years for me. I guess my brain is filling up the vacant space and he said the tumor may be dormant. I have a grade II Astrocytoma that has extensions - kind of like roots - and he said that he…
-
Brain "cyst"
Has anyone here heard of a malignant brain "Cyst"? My MIL has a growth in the cerebellum and is having tremors in her hand and walks like a drunken sailor. We are waiting for the results of the MRI.
-
Grade II Oligodendroglioma - Partial removal Partially Inoperable - Update/Advice
Been a while since I have posted an update on our situation, figured while I had a few minutes and my brain seemed to be on a somewhat steady rollercoaster today, I’d try and write. We had our second opinion on Halloween (of all days) for Jordan’s remaining tumor and the wait and see approach. He weighed in again, and has…
-
Update on David after the BBBD
I don't know what I posted here on this site about how David is doing since the BBBD. My memory is just toast...I think partly from stress. I am going to start new threads more often because I can't find where I posted what about David. Anyway.... David and I came home from the hospital on Saturday. We just took it easy…
-
Anaplastic Astrocytoma grade 3
My sisters husband was diagnosed a couple of days ago with Anaplastic Astrocytoma grade 3, The doctors told him they are going to go in the week after thanksgiving and remove all they can, then on to radiation and chemo. I am so scared for him and I am hoping that it goes well and we can help him beat this. I am wondering…
-
Post whole brain radiation 32 years ago
My son was diagnosed with astrocytoma to the right side of the brain just above and just behind the ear. He had a craniotomie, removed tumor and large doses of whole brain radiation for 4 weeks. Six years later had second craniotomie second tumor, larger, no radiation. Thyroid cancer nineteen years later, removed. Cancer…
-
MRI at local hospital or at the big hospital?
Hi: In December it will be time to do another MRI. We ususally travel to Seattle Children's Hospital. We live in Alaska. We are going to stay in Alaska and do the December MRI in Anchorage. We have been told that the machines are the same and they will have the Seattle Tumor Board read her film. Have any of you made the…
-
whole brain radiation
hi everyone iha lung cancer ha rad and chemo mets to brain 2 gamma knifes 3 craniacttomies 4 seizures now they want to do whole brain radiation going for consult 11 17 11 just looking for info thanx dave
-
Surgery, radiation, temodar and WHAT ELSE?
Dear All, I have so many thoughts but I will keep myself focus. This hopefully won't degenerate in some emotional post. Anybody suggested some treatment to your neuro onc and the response is " That is a good though, we should look into this."? Maybe I should be grateful that the neuro-onc is open to my ideas. But it…
-
I think maybe things may be changing for the better?
We received GREAT news today!!! David is approved for that special treatment that we wanted him to have...the blood brain barrier disrupter protocol!!!! I spent the morning on the phone with OHSU, with our oncologist's staff, with a patient care coordinator, with social security, with David's insurance company, with the…
-
Grade 3 Anaplastic Oligodendroglioma
I was diagnosed on 10/3/11 after undergoing left frontal resection on 9/27/11. Very crazy set of events... I had a tonic-clonic seizure on 9/2/11 out of the blue during hot yoga. After a visit to the ER, a normal neuro exam, and a clean CAT Scan (the tumor couldn't be seen), I received a referral to a neurologist. I saw…
-
Today: Treatment, etc.
We are back up at OHSU and David is being treated with the BBBD protocol. Dr. Neuwelt and his staff worked out the insurance issues for us--that's a miracle. Even Dr. N's top assistant did not think the insurance would authorize the treatments. Actually, they had us add David to Medicare, and Medicare is paying part, and…
-
New Here
Hi my name is La Veren Almost 3 years ago my husband was digaonsed with stage 2 brain cancer Dr's said he had 7 to 10 years at that time. They did surgery and removed as much as they could and he went thru cemo and is on seizure meds 3 times a day. He handled the cemo pretty good lost his but it has grown back. The last…
-
Cytomegalovirus (CMV) and GBM updated info
Hi all - I am interested in the current thinking on the link between CMV and GBM, and about the kinds of immunotherapies which might make a difference in battling this terrible disease. Does anyone have any current information on this? Thanks - CindyO
-
Heres hope.........
On Decemeber 26th 2011 (last year) my dad went to the emergency , after fighting with him for weeks that he wasnt acting right, doing strange things, not being able to make conversation etc.. etc.. hes a stubborn man, and has barely ever been sick in his life. So with saying this, he kept trying to tell myself , my mother…
-
Your Location,type of Brain Cancer?
Just curious, but it seems there is an epidemic of Brain Tumor's in young people in the United Stated. My 15 year old daughter was diagnosed in 2005 with Oligodendroglioma stage 2. It has returned and she is scheduled for surgury this month. I'm intrested how many people have brain tumors and where they live. Her…
-
2 months since GBM diagnosis, Going on third surgery
Hello everyone. My mother was recently diagnosed with GBM. She underwent a craniotomy to resect two tumors on January 20. Following an an amazingly-fast regrowth of one of the tumors, she underwent a second craniotomy on January 29. She has recovered from her surgeries very well, and she was slated to start radiation…
-
Questin for Cindysuetoyou
Hello Cindy, I have a question for you and I hope you don't mind me asking.....Was David taking temodar this whole time since his surgery? My husband stopped his in September and December will be his first MRI since not taking it and I have been so worried that the temodar was what was helping to keep the tumor away and…
-
Our ordeal...sorry it's so long....
I don't know where to start. We've had a long, horrible rough spell and I haven''t had the heart to write about it.…..well, here's what's been going on… Tuesday 9/27 David had a second craniotomy. They removed a lot of tumor, some radiation necrosis, and a large cyst. They didn't get all of the tumor, but they felt they…
-
A New Era for Glioma
Dear all, if you are reading this message, then it means that you either have brain cancer or your love one does. Either way I am so so sorry. I did a websearch regarding ONCOLYTIC therapy and gliomas.For the scientifically inclined: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720101/ The theory is that viruses invade…
-
DR. BERGER UCSF- Any experiences?
Well, this is my first time posting on this board. My Husband was diagnosed with GBM IV about a week ago. We were told it was inoperable due to location. After much research and several opinions we decided to get on a plane and go to San Francisco to see DR. BERGER who said he will operate. It was a hard decision to make…
-
Hormone Changes after surgery for Oligodendroglioma grade II?
Has anyone, namely female, experienced any types of hormonal changes since surgery? My hair is much more wirey. I am blonde, no European background and suddenly I have whiskers. Blonde but wirey and not just one or two, thicker to the point that my dad noticed! My husband jokes and says that the hair along my scar is…