Last week, I got a call from the guru of optice nerve tumors from Grand Rapids, Michigan (Dr. Aaberg). He is very knowledgeable about all of the possible optic nerve treatments and know all of the key doctors working in this area of expertise. He had little to offer me other than IV Avastin, which is a systemic chemo drug. He has only used this treatment one time on a 15-year-old VHL girl ten years ago for a two-year course. It eventually stopped her tumor from growing but never shrank it. He told me at the present time there are no new chemo agents or clinical trials available for my optic nerve tumor. He also told me that there are only 10-15 people like me in the country right now seeking treatment for this VHL type tumor. How did I get so lucky? I talked to this doctor for over an hour. He was already aware of who I was and was very happy to talk to me. I asked him about the gamma knife, radiation, or anything else that could possibly shrink my tumor without vision loss. He mentioned one other type of heat treatment (diathermy), but the patient who received it went completely blind in that eye (his other eye was unaffected). Then over the course of the next six months, his vision returned to where it was pre-treatment, but the good thing is that the tumor died. The risk for me would be complete blindness and not knowing if vision would be restored back to where it is now and/or if the tumor would die completely. He feels that would be pretty risky for me, but wanted me to be aware of it. I told him what Dr. Cohen suggested (the heavy course of steroids) and he thought that was a good option, but he has not used it before. He explained in further depth why I am seeing the way that I am. He said that as the tumor grows, not only does it apply pressure on the nerve sending signals to my brain, but it leaks an exudate (fluid) that causes the area to be inflamed. So the thought behind the high-dose steroids is that you can shock that area to reduce swelling and maybe the fluid would get absorbed. Then perhaps the vision would become more clear. I told him I would call my internist right away to make a decision quickly and he agreed. He said he'd be happy to see me any time, whether I wanted treatment through him or not.
The following day (Friday), I went to see Dr. Havey for medical clearance and to get his opinion on how the high-dose steroids or IV chemo would affect my overall health considering all of my issues. He said I should do the steroids first to reduce the swelling, and see how that goes before moving to chemo. He felt that I could handle the steroids just fine, but should receive the drug in the hospital so I could be closely monitored, as a high dose of steroids can cause high blood pressure, heart attack or hyperglycemia. He said he would admit me as soon as I chose a date and I did all the pre-op work while I was there.
I considered putting it off for a couple of weeks due to insurance issues and scheduling conflicts. However, I decided my health was too important and I was losing sleep worrying about continuing vision loss that I might never get back. So, on Tuesday I became a patient once again at Northwestern. They started the IV and are giving me 1000mg of Prednisone a day. So far, my blood pressure is a little high but stable. I have experience bad headaches and last night my blood sugar was really high (389), so I am now receiving insulin. Today it is under control.
The plan is to get another dose tomorrow and follow my blood sugars throughout the day. Then they ordered me a glucose monitor for home and I will track it for the next month. I will continue to take oral Prednisone at a lower dose (80 mg/day) at home for another four weeks. This is still a rather high dose, as normally I take 6 mg a day.
Hopefully on Saturday I will still be able to go to Camp Timberlee in Wisconsin with Alyssa and her Brownie troop. Keep me in your prayers and I will keep you posted!
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