Aug 2, 2010
Hi Nelson. I spoke with you a couple years ago and now I'm ready to have the radiation treatment on my swollen parotid glands done in Michigan. I found a radiation oncologist who will do it. But the problem is she's never done it before. No one in Michigan has had the procedure that I know of. I feel I need to talk to someone before starting it. She said it would be 12 treatments at a dose of radiation around 2400 everyday for 12 days. Do you know what the appropriate dose of radiation is? Please let me know if there's anyone who's had this done that's willing to talk to me about it. Thank, Jeff
Response from Mr. Vergel
I have been seeing many HIV positive men with enlarged parotid glands in my 17 years of travels giving lectures around the country. I am also one of those men who had moderate inflammation of the parotid glands.
No one really knows what causes this disfiguring inflammation. It could be due to the HIV virus itself, inflammatory cytokines and too many CD8 cells produced by immune reconstitution which accumulate in the gland tissue, fat build up in the glands, etc. Some people have this problem along with facial wasting and/or neck enlargement, which makes their faces look very abnormal. So even if you treat your facial wasting with facial fillers, this problem needs to be treated so that you can attain a more normal look that resembles what you normally would look like without the effects of HIV and its medications.
The parotid gland is the largest of the salivary glands that produce saliva that is important in the digestion of food. The gland lies under the angle of the jaw just beneath the ear.
I had been searching for a long time for an answer. Not a single HIV conference has had a presentation on this problem that may affect around 10 percent of men with HIV. It does not seem to affect as many women with HIV for unknown reasons. I had heard about radiation treatments in the past but they created severe side effects like burning of the salivary glands, salivary production problems, and eventual tooth decay. A few years ago my dear friend Dr. Tony Mills from Los Angeles called me to tell me about the great results he had seen in his patients referred to Dr Patricia Gordon. I decided to call Dr. Gordon myself to talk to her about her experiences. Dr. Gordon did her undergrad at Harvard and her residency at UCLA. She is a radiation oncologist and practices at Century City Hospital in Los Angeles.
A very pleasant and seemingly dedicated doctor, she immediately told me how happy she was with the excellent remission rates she had been seen in her patients. Most noticed complete resolution of the problem after a few sessions of low dose electron-based radiation. She stressed the fact that this protocol differs greatly from the ones used in the past that created greater side effects because of the nature of the radiation, Unlike the old method that used photons that penetrate the skin more deeply, she uses electrons that penetrate a very thin layer of tissue instead, so they do not cause the burning and salivary gland dysfunction seen in the past.
She has had over 400 male patients referred to her practice (not one female has been referred). At baseline, all patients get a CT scan of their parotid gland area for assessment. They get a customized molded lead mask that only exposes the area to be treated. They then receive 16 sessions (once a day for five days a week, for five minutes each) on both sides of the face. She said that most patients see improvements after four sessions. However, she did not have before and after pictures to share with me. All procedures have been reimbursable by Medicare and insurance since this condition often causes pain around the jaw area.
I decided to get my parotid glands treated and I am happy to say that they got back to normal after 7 sessions. It has been 5 years now (March 2006) and they are still normal! I had no significant side effects besides redness for a few days, no beard for a month (which I liked), and a temporary loss of normal saliva production. All returned to normal after a month or so. I am not sure, but I think I had a slight decrease in CD4 cells (around 20) but this is hard to tell unless someone performs a controlled study. My CD4 cells also returned to baseline after two months.
A typical patient would receive 12-16 treatments, five days a week, five minutes a day. The dose is relatively low -- 2,400 centigray (cGy) at 150 cGy per fraction. She treats with electrons, which are specifically prescribed to treat the depth of the parotid gland, so that the normal tissues surrounding the parotid gland, and deep to the parotid gland, are minimally exposed to the radiation so that the side effects are very local.
Dr. Gordon phone number is 310-201-6739.She is happy to talk to doctors or patients about this procedure.
Have your radiologist talk to her since she is happy to assist doctors around the country in treating this condition that is often ignored due to lack of information.
Let me know how it goes!
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