Larry/Spanish Buddha,

I had a consultation with Dr. Katerelos because I have nodules that developed on the forefinger of my left hand, the other hand that did not have RT. After the hassle with Medicare not paying and Scripps not bothering to appeal even after I asked, i decided to find another option. I contacted the radiation department at Loma Linda and they were responsive. The nurse I talked with didn't know anything about DD, but she took the information and in about 2 days called me back and said that Dr. Katerelos would be willing to do RT on DD. I scheduled an appointment for a consultation and provided the information he needed - medical notes from Scripps of prior radiation, personal info, etc. Then I went for the consultation and Dr. Katerelos was very prepared. The consultation was not rushed at all and he was very thorough and communicative.

Upon examination of the new nodules of my left hand, he said that he wanted me to come back if and when my hand showed signs of active DD like I had described in my right hand - the crawly, itchy feeling, new nodules, etc. He wanted me to come back with the active symptoms and before contracture.

I asked him about putting his name on this site, but he said maybe to wait until I could report results on my DD. I would encourage anyone who finds Loma Linda a location that would work for you to go to him for a consultation. While the protocol used by Dr. T at Scripps worked for me, I still needed to go back for a second RT in two spots that were just outside the radiated area. Dr. Katerelos found the studies for the 7 days x 3 g protocol showed slightly better results, but most of all, he found one study that did random sampling which he called the "gold standard" of research. I specifically asked about the 5 x3 and another 5 x 3 three months later of the German/Dr. S protocol. He knew about the various protocols and explained his reasoning for going 7 x 3. By all I saw and heard, the man knows what he is talking about, enough so that I have perhaps more confidence in him. RT with Dr. T was effective for me, but you calculate in the lack of support at Scripps in my appeal, that definitely tips the scale in favor of Loma Linda and Dr. Katerelos.

Flojo,

Thanks very much for the tip about Loma Linda. Should I ever decide to have R/T, Loma Linda is much more convenient for me than La Jolla, as it's within a more reasonable driving range. Thanks also for your continued posts and general diligence in taking a leadership role fighting this disease (on behalf of "all us followers" out there).

Luba,
Not much to report on yet. Since Scripps wouldn't file an appeal, I have to do it. It was past their stated date that I had to appeal, so I requested an extension for "good cause". They have 60 days to reply to the request for extension, about another 30 days. Since I filed that, I received the letter from Dr. Katerelos that should help, but I talked with Medicare yesterday and was told that sending any additional documentation now would not catch up with what I submitted before. So, I'll see what they say and go from there.
It's a real bummer that Scripps did not do anything on an appeal.
Flora

Carol,

It is my understanding that RT does not work on cords, but I think some people have posted that it seemed to make the cords less tight. Maybe they will describe their results from RT. I'm not a medical person, but I think cords indicate that part of the disease is past the active stage and being active is critical for RT.
I had cords and nodules at the same time. All I hoped for was to just stop the progression of the disease and stopping the nodules stops them from becoming cords, at least it did for me. A little increased span across my hand from thumb to small finger was a plus that I didn't even hope for. I was glad that the itchy/crawly feelings went away and the nodules significantly reduced in size or disappeared. It was clear to me that DD was no longer active in my hand and the progression from the nodules gone. The preexisting cords have caused cupping in my palm to continue, but not like the rapid progression that was happing before RT.

I look to NA (maybe Xiaflex) to deal with the cords.

Hope this helps. It is hard to describe this disease and what happens because it is so weird. Nobody's hand is like another's and even my own right hand is very different from my left hand. You are doing the right thing by researching and asking questions, but when it comes down to what is best for you, get all the information you can then you alone have to make that decision for treatment.

Flora

flojo:

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Luba,
Not much to report on yet. Since Scripps wouldn't file an appeal, I have to do it. It was past their stated date that I had to appeal, so I requested an extension for "good cause". They have 60 days to reply to the request for extension, about another 30 days. Since I filed that, I received the letter from Dr. Katerelos that should help, but I talked with Medicare yesterday and was told that sending any additional documentation now would not catch up with what I submitted before. So, I'll see what they say and go from there.
It's a real bummer that Scripps did not do anything on an appeal.
Flora