Newly Diagnosed with Glioblastoma

Hello John

i am so sorry to hear of your diagnosis. It must be so difficult for you. It is a hard illness, but there is hope. You will find us a supportive community but most of our references will relate to the U.K., and your hospital references are in the USA. The success of treatment is largely dependent on an early diagnosis and early treatment. You have the former but you need the care of a team which includes a neuro-surgeon and Neuro-oncologist. I cannot advise you of the most appropriate treatments for you but this may include surgery, radiotherapy and oral Chemotherapy. 

My advice is to get the appropriate team onto this, and as soon as possible. It is not an illness that Is treated at a slow pace. Can your family physician give you advice on an appropriate center? It is important that you have confidence in those treating you, but you have many excellent Stateside Centers, but you also need one conveniently placed as all treatments are ongoing and long-term.

I hope this helps. Return to us here if you need support

Brian

Brian I appreciate your response. I was newly diagnosed with Glioblastoma less than a week ago (last Monday). I received my diagnosis from Albany Medical Center, which is located in Albany NY.

I am not impressed with the care I have received from AMC and I'm seeking treatment elsewhere either at Sloan Kettering, which is in NYC or Roswell Cancer Institute, in Buffalo NY.

It is difficult to get an initial appointment to see a cancer doctor and it certainly doesn't help that Albany Medical Center is dragging it's feet getting my medical records forwarded (hospital chart, CT scans & MRI).

I first noticed symptoms a couple of weeks ago but dismissed them due to chronic cervical stenosis. I am a life long IT worker and attributed them to a pinched nerve in my neck. What caused me to make a doctor's appointment with my primary care physician on August 4th is I seized last week while standing in my garage and had to hold on for dear life so as not to fall down.

My primary care physician took (1) look at me and noticed my confusion then called an ambulance for admittance on a stroke protocol.

A few hours later I was diagnosed with multiple brain lesions from a CT scan (1) large lesion on the top left hemisphere and (2) smaller ones on the right, that was confirmed by an MRI taken 48 hours later.

I appreciate your response but I noticed a while later after I joined this Forum the .uk designation.

I suppose we can blame Google for returning a search result "Gliobastoma Chat Forums" where the Macmillan.org topped the list.

HiYou can still get good advise even tho' you don't live in the UK. GBM doesn't care where you're from. I am 29 months post dx life is okish. 

Hello prettyfedup,

Are any folks with GBM using the Optune device?

Thank you. You will always be welcome here, whatever the  stage of your journey. You will find those on this community are either sufferers like a me, in a similar decade to you, or carers who can, and do,so much to help and raise morale. You will find the community eager to support, no matter where you are located. Glioblastoma is a terrible disease, affecting all age groups, but statistically mainly men, in our decade, when it peaks. Of course there are women afflicted too and you will find them here. You will find too people blaming symptoms on other causes. I shared this denial , saying it was tiredness. We had been busy in our community, alongside work and I thought this was the cause. My diagnosis was early and swift and surgery was within days. Until now it has been successful and after radiotherapy and Chemotherapy also. I still feel fortunate.

Glioblastoma  is often thought to be a stroke,Symptoms can be very similar. Seizures are common early symptoms of glioblastoma, closely mimicking stroke weakness and drooping. It was good your physician recognised the urgency  even if he too thought it was a  stroke. Given the relative rarity of glioblastoma and the commonness of strokes, you can see  how easy it is to misdiagnose, before an MRI scan. as yours,  that journey usually starts with a CT scan Fortunately you got the diagnosis prioritisation you needed and your journey can begin. Do you have a good local support network, family etc.?

As an aside, my wife and I flew into Buffalo, before this affliction, on the way to the famous falls, over the Canadian border. Fortunately we travelled in the last ten years.Flying would now  be contraindicated and insurance for any trip, far too costly. Another disbenefit  of this awful disease

Keep in touch with us and keep pushing for that early appointment 

Brian

Thanks again Brian. I hope to get an appointment this week. I will keep you posted.

I took a look. Sloan Kettering in NYC claims it handles glioblastoma and is a non-profit hospital.

wherever you are treated I hope it goes well.

the Optune device is not licensed here for our health system. but could be obtained privately. It costs around $ 25000 a month. I was not convinced it works. For that money I would expect an instant cure.

lol i know what you mean. Okiish is brilliant for GBM4 Im not complaining. My arm is still useless and I'm a bit wobbly walking, but other than the no probs lol

OKiish "is brilliant" for GBM4. Like you I am rather weak on my right side. I have a tendency to drag my right foot while walking and my right arm/hand is pretty useless right now.

I still have my cognitive function, although I find it difficult to articulate my words.

If you're reading my post you might get the impression I'm behaving normally, but I can assure you I'm not.

Thankfully, there is a backspace key on my laptop to correct my misspellings.

I just want to make it to treatment, which is my goal for today.