Douglas Berliner

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have a clival chordoma that was originally diagnosed and treated in 1997 with a trans-sphenoidal, partial resection surgery (Georgetown University Hospital).

I later went to Loma Linda University Medical Center and received a total of 72 grays of proton beam radiation through 6 angles and 48 treatment sessions over 3 months. The proton beam treatment gave me almost 8 years of stable, no growth reports.

In August 2005 my tumor began regrowing and was affecting my 3rd, 4th, & 6th (optic) nerves that ultimately resulted in the loss of use of my left eye. After being rejected for additional proton beam and radiation treatment due to non-target tissue necrosis, having 2 Neurosurgeons say that the temporary benefit of surgery did not outweigh the risk, and two Oncologists say that they did not have a protocol for treating recurrent Chordomas, I sought out treatment by Duke Brain Tumor Center .

I have been receiving chemotherapy treatment of Gleevec (Imatinib) (400mg/day) with Hydrea (HydroxyUrea) (1,000mg/day) with Decadron (8mg/day) since January 2006. Although I had numerous side effects the MRIs taken after 2 months showed the chordoma to be stable, with no new growth.

Some of the worse side effects were extreme fatigue, muscle wasting, and diabetes, were primarily caused by the Decadron, of which I was tapered down to 1mg/day. Other side effects were: nausea, swelling of the face and stomach, fatigue, some heartburn, increased infections, some urinary difficulty, thinning of the skin and increase healing time.

After 4 months of treatment, my HMO finally agreed to pay for my treatment, and reimbursed me most of my costs. I was tapered off the Decadron and the more severe side effects began to subside. However, I was still left with a large loss of muscle mass, diabetes, bone thinning, avascular necrosis of the right hip, and an increased susceptibility to catching infections.

In May of 2007, I underwent surgery at Massachusetts General Hospital in hopes of getting back the use of my left eye. It was a trans-nasal partial resection that removed about 70% of the tumor mass, but I did not get back the use of my eye.

After recovery, I had some post-surgery complications, had some problems with my balance, and had to spend two weeks in their rehabilitation facility. I found that the site of the surgery scarred the openings of my Eustachian tubes, which caused the fluids in my inner ear to accumulate, disrupted my balance, and made it difficult to hear properly. The fluids then would continuously flow out of the drainage tubes that were placed in my ear-drum. I had to walk with a cane to help keep my balance, and needed to clean my ears numerous times each day and night, as the fluids would drain out. Talks with the ENT at MGH indicated that shunts would not be helpful, as their history of inserting them proved to only exasperate the problem.

The surgery also removed the flap of skin the separated the sphenoid sinus from the rest of the nasal cavity, and destroyed the villi in the area of the surgery. This has allowed the nasal secretions to accumulate and crust up in that area, that even with 4x daily sinus rinses, caused a continuous foul smell, and often dislodged large thumb-tip sized solidified secretions that often caused bleeding. Both of these problems continue to this day.

I went back to getting bi-monthly MRIs, and monthly Nasal Cleanings from my HMO ENT. I did not have any new growth until this last MRI in November 2008, where it showed that the tumor mass had either grown or shifted. I will be getting another MRI this week to determine which it was exactly.

I have consulted with the Radiation Oncology group at Duke, and they believe that a more conformal, fractionated stereotactical radiotherapy using Photon beam radiation of the “new growth” area, followed by some intravenous chemotherapy would be helpful. When comparing the treatment plan from Loma Linda, they said the new growth area was far enough forward from the old radiation area to allow it without too great a risk of necropathy of non-target tissue. I anticipate staying on my current chemotherapy until it is determined positively that it is no longer being effective in halting the growth, and that the recommended course would be advantageous.

No Reason Given.