One patient with glioblastoma still alive nine years later
by rainflame4 on Sun Dec 16, 2012 07:53 PM
I'm looking for a recommendation for the best hospital or doctor for my fiance who was recently diagnosed with an anaplastic astrocytoma grade 111. He had a "full" resection at Johns Hopkins and they are now recommending radiation and chemo. We are located in upstate NY, but are willing to travel for the best care if it would make a difference at this stage. Our surgeon at Johns Hopkins said our local hospital should be adaquate for this "prescriptive" radiation and chemo combo, but I'd rather disrupt our lives for 6 weeks if going back to Johns Hopkins or elsewhere might make a real difference in his survival.
Any thoughts on best places would be appreciated. Thanks so much!
Brief history: he is 34 years old. He presented with a seizure on 9/12/12. 911. ER at local hospital found a mass. Craniotomy#1 to remove the mass at the local hospital on 9/13/12. We learned a month later that the surgery had been unsuccessful in both removing it or providing a diagnostic path (devestating). We then found Dr. Weingart at Johhs Hopkins who did his second craniotomy on 11/21/12 and resected it (as fully as it is possible).
by willnotbeatme on Sun Dec 16, 2012 11:06 PM
I had got my treatment from Duke. But I live in Florida. I had radiation, cemo ( temodar) combo. I finished radiation 6 weeks, had a month off. Picked up with a monthly 5/28 cycle. I now have been on Temodar for 3 years striaght, GOD HAS HEALD ME OF CANCER. First diagnosis was AA3. Twice. Sent back off for a new look, and it was upgraded to Gliobastoma grade 4. I was 33 at the time. Went to thER with a mjor headache, diagnosis was Nov. 12,2009. Rushed for craniotomy on Nov. 13,2009. The doctors did not give me any hope told my wife and I, that I had 2 to 5 years at the most. Now they are all smiles and say im pretty darn good to go. And ask me where the heck do I come from because Im about 1 in 10,000. I have no side effects from treament. I kept my self very active cause if you don't you will waist. And remember this. His mind will kill him if he lets it. But John Hopkins is a very good hospital. Shoot one of the best.
by karynk on Sun Dec 16, 2012 11:13 PM
Hi Sarah -
If I were in your shoes, I would go back to Johns Hopkins and get the best Radiation Oncologist that deals with brain tumors. Yes, a local physician can prescribe the Temodar. But when it comes to radiation - I would find the best you can.
by allan9 on Mon Dec 17, 2012 01:06 AM
I thought your not supposed to stay on Temodar for that long? Did you participate in any clinical trial at Duke?
by jon4156 on Mon Dec 17, 2012 02:33 AM
The internet can be your friend.
by echatlos on Mon Dec 17, 2012 12:43 PM
by SouthernMaryland on Mon Dec 17, 2012 01:26 PM
My son was treated at Hopkins. Dr. Weingart was his surgeon as well. I live in Maryland, but Hopkins was still an hour and half away. Anyway he was treated very well there. He was treated by Dr. Holdhoff in oncology and Dr. Kleinberg in radiology. Unfortunately my son had alot of complications and treatment had to be stopped as it was doing more harm than good. He was being treated for a secondary GBM which was the result of a recurrence of his Grade II Diffuse Astrocytoma which he was treated for 6 years earlier.
Barb (Paul's Mom)
4/18/82 - 7/29/12
by mollie924 on Tue Dec 18, 2012 02:51 AM
I am so sorry for the loss of your son. My husband has a grade 3 astrocytoma and I worry about when his will develop into a grade 4 GBM but my husband is 65. I wish you much solace and peace now and in the future.
by rainflame4 on Mon Dec 31, 2012 06:04 PM
I'm so sorry for the loss of your son.
Thank you for your vote of confidence about Hopkins. My fiance will have Dr. Kleinberg in radiology too. We met with everyone down there and it seems like a good program. We will be able to start down there earlier than we could near home so it's definitley the best plan. I just want the best possible outcome for him as he starts with all this.
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