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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

One of my family members who is advocating for us found a research clinic called the National Health Institute in Bethesda, MD. It'a s federally funded research clinic. It's run by Dr. Howard Fine. I don't know a thing about him or them. Do any of you know anything about this place? All they do is clinical research. They will treat David for free. Sounds too good to be true. They would determine which clinical would benefit him the most and then let us decide what we want to do. I'll write more later but I haven't gotten any sleep lately and I am barely functional.

Please let me know if you know anything about this place. Here's the link to their website:
http://home.ccr.cancer.gov/nob/staff.aspx

Thank you for any input you can give to me. The clock is ticking away....

Love and blessings,
Cindy in Salem, OR

JaneSaintClair
Posts: 1
Joined: Jul 2011

My sister is undergoing treatment at NIH in Bethesda. She was enrolled in a clinical trial but was recently disqualified because it was not effective in her case. That said, she has nothing but wonderful things to say about the staff and the services that they offer. They are going to continue to follow her while she does some conventional treatments (since all they offer are trials) to try to get the tumor under control. Then, with fingers crossed, she can enroll in subsequent studies as needed. She had an great experience with them and although the trial didn't work out for her, she would not hesitate to go back. And yes... all of the expenses were paid and she received a small travel stipend as well. It did require frequent travel to Bethesda... about every 21 days or so. It was usually a 2 or 3 night stay, depending on schedules. That wasn't too bad for her since it was only about a 5 hour drive. Best of luck to you and your family. There is lots of support out there and some great communities for caregivers.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

Hello, what is the address of Davids blog again?

NikosF
Posts: 2
Joined: Jul 2011

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)

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

If your back home NO is not good, I would find a place that would treat you or a loved one.
I know about protocols being set up and trying to get treatments back home, but I found out the hard way that the NO's back home DO NOT want to follow ANYBODY's protocol.
It seems to be a pride thing. The "teamwork" thing that I had heard about for years was completely a MYTH.
It may be different with other victims I am sure HOWEVER..
If this fine facility just wants to give advise and sit on the sidelines while you try and find a place back home, which for most people won't be there...
i would opt for one of the better facilities who are willing to treat your loved one and take enough interest to want to have him come back..

Just my opinion

My wife is GBM4. We go to MD Anderson. Live 1500 miles away.

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