Help---need input on The National Health Institute and Dr. Howard Fine ASAP

cindysuetoyou said:

thank you
Thank you very much for your input. I am very, very grateful. I'd never heard of NIH. I've done a massive amount of internet research...I may have not checked them out since I am naturally suspicious of anything government run. I may need to readjust my thinking.

How is your sister doing with the conventional treatments? What kind of tumor is she fighting? And how old is she? David is 28 and is fighting an anaplastic oligodendroglioma. We live on the West Coast and I don't know how realistic it is to try to get treatment from across the country. I would move there if it would help David, though.

We are, at this point in time, planning on flying to MD on August 2nd. We are waiting a week and taking David with us (and 6 other family members) on a cruise to Alaska. My family all contributed and paid for David to join us. Our regular NO and NIH both told us that it would be okay to wait a few weeks before we decide what treatment we will pursue. (It scares me to put off making a decision and starting a treatment.) It all depends on what we find out at NIH. Our NO is still battling with our insurance company that is still refusing to pay for David's treatment, calling it "experimental." The drugs are all FDA approved but the method of delivering them to the tumor is not FDA approved...yet. It is very close to approval...but it won't be approved in time for David. I don't think we will be able to get the insurance company to pay. Personally, right now I feel like they are looking for any loophole so they don't have to pay. The method of chemo delivery requires a surgical procedure to put a catheter in the femoral artery and run chemo right to the brain, and the surgery requires anesthesia and that runs the cost of the treatment up.

David as of today is not symptomatic. He had two seizures the first week in July and started on Keppra. The seizures are what revealed the new tumor growth. We are still reeling from the shock of finding out that he has "disease progression" but learning about NIH and the possibility of participation in a clinical trial has given us a pinch of hope and has helped us to mentally regroup and feel like we have a fighting chance again.

I dread seeing David go through IV chemo.....I am so afraid of what we may have to face. I am praying for courage and strength so I can help David. He is so very brave and strong and willing to fight, even though he is frightened too.

Thank you again for your response, and I will be praying for your sister and for you.

Love and blessings,
Cindy

NikosF said:

I'd definitely go along to the NIH. Dr Fine is one of the most knowledgeable people in the field of neuro-oncology in the world.

They deliver fantastic services, and it is in fact all free (well I pay for it with my taxes). I had an operation done there at the clinical center and the care was fantastic.

Be aware that while consulting with Dr Fine and the NO branch, they will plan on all care being delivered to you locally with your NO at home. They sit on the side and give advice *unless* you are signed up to a clinical trial that is being administered on their site. So - while their advice is free, usually you are still paying back home.

If they find your case 'interesting' you get signed up to a natural history trial (which means they basically just follow you).

I find it's worth having that highly qualified second opinion on the side to bounce ideas off if nothing else. The quality of their MRI scanners is very good as well. They seem to use almost exclusively 3T scanners and do all their scans with perfusion (which shows more about the tumor activity).

For context I'm a grade IV GBM (so the worst type out there there is)