Treatment Plan…
So, we met with Dr. Gruber again on Tuesday to discuss his treatment plan…..his plan is 6 weeks of radiation (5 days/week)-this is conformal/3D radiation-PLUS Temodar (oral chemo) for a minimum of 42 days PLUS Avastin every other week (not chemo-it cuts the blood supply to the tumor cells).
On Wednesday we met with the Radiation Oncologists at Memorial Sloan Kettering. Their treatment plan consisted of 6 weeks of radiation. No chemo during radiation but possibly afterwards.
Chris was comfortable with both places but finally decided to seek treatment at Overlook since their treatment plan is a little more aggressive right off the bat. Actually, the Radiation Oncologist from MSKCC was calling Dr. Gruber to discuss his experience with the combined treatment since MSKCC doesn’t do that right now.
Next Tuesday Chris goes in for the radiation set-up and then about a week later treatment officially begins.
Possible Treatment…
So Chris heard back from Dr. Gruber (Overlook & NYU) – the NYU tumor review board reviewed Chris’ info as well as the newest high-tech MRI pictures and they all also feel that it’s NOT necessary to take a biopsy risk since it does appear to be a low grade glioma that they wouldn’t remove. It’s suggested that he go straight to aggressive treatment being Proton Beam Therapy (seriously high tech form of radiation) and a Chemo “cocktail”….Dr. Gruber is going to meet with Dr. Schwartz at Overlook tomorrow to discuss in more detail and then they’ll meet with us….We’re also still meeting with the Radiation Oncologist at Sloane Kettering next week to hear their treatment opinion…….We’ll keep you all posted……
Today’s Appointment…
Today we met with the Neuro-Oncologist from Overlook who also happens to be connected with NYU Medical Center (that’s where today’s appt. was). The appointment with Dr. Gruber provided us with clarification on a few key items as well as letting us know about a few things that hadn’t been mentioned to us before. He highly suggests a biopsy…..he feels that this could be a piloctyic astrocytoma – and if it is, this would definitely be removed. If this is the tumor type and it was treated with radiation, there is a good chance that several years down the road there could be a recurrence but of a different tumor type. This hasn’t been mentioned as a possibility before. If it is another type, then we’ll know the best course of treatment. Chris is going tomorrow for a functional MRI and then all of his info will be presented at NYU’s tumor review board next week.
Where & How to treat……
Just a quick update regarding who Chris will be meeting with….He will be meeting with a Neuro-oncologist on Friday – this Dr. is the 3rd “team member” at Overlook and will review Chris’ info and discuss treatment options as well as his take on to biopsy or not……
Memorial Sloan Kettering is putting Chris in touch with a Radiation Oncologist to discuss their opinion regarding treatment.
Sloan Kettering does not feel there is a need for a biopsy however, Overlook feels that without doing a biopsy you run the risk of not knowing exactly what you are treating which in turn can result in over or under treatment (and perhaps the wrong treatment path all together).
We’ll keep you posted……
The diagnosis
After a LONG week of “What ifs”, Chris had an appointment with a top Neurosurgeon and Neuro-Radiologist at Overlook Hospital – they took a look at his MRI pictures and performed a series of tests and agreed that Chris has a LOW GRADE glioma. Relatively speaking, this is good news. It would have been better if they said that it was all a mistake but that’s not reality.
Later that same day, Chris met with a neuro-specialist at Memorial Sloan Kettering who also agreed that this is a low grade glioma but would present all the info to the tumor review board – again, the consensus is that this is a low grade glioma and that treatment is fairly “standard”. He’s waiting for a call from the Neurosurgeon at Overlook to go over a few questions and then he’ll make his official decision on where to go for treatment…………..
why bugs in the tongue?
as I’m sure most of you know, aside from the headache one of the first symptoms of note was a swollen tongue, which according to Chris looked like bugs were coming out of it. Marley is quick to confirm that daddy had bugs in his tongue
bugsinthetongue 