Monday, I showed Dr. T a soft lump that developed on the outside of my wrist. He said he has seen Dups extending from the palm into the middle of the wrist, but not on the outside like mine is. Neither my GP nor Dr. T knows what the lump is. Dr. T took the time to discuss it with me and considered what to do. He did not want to do RT on it until he is sure it is Dups. That makes sense to me.

Based on the CT scan and SIMS planning appointment, the pattern cut in the metal plate allowed RT only on the target area. In my case, the whole palm is the target since I have nodules all over. The techs used a clear plastic outline of my hand to place my hand exactly right under the radiation. They measured and moved the table up/down to locate my hand an exact distance from the beam. They then put a cloth over my hand and a "bolus" between my hand and the RT beam. The bolus looks kind of like jelly filled bubble wrap or like a translucent sheet of floppy silicone. I asked about the purpose. Since the target tissue is near the surface, the bolus absorbs some of the radiation to control the depth of the RT.

After it was set up on Monday, Dr. T came in, looked at how they had it set up and okayed it. He did not come in the rest of the week, but he will meet with me again Monday and determine the effectiveness. I am scheduled for 5 more days next week. I think he will say to proceed with the plan, because it is better. I didn't know what to expect, but I did not expect to see results this week. I can tell a difference. So can my husband and daughter. The nodules look smaller. My hand feels less taut. On Monday after the first RT session, my hand did the itching thing like it has done often. Other than not feeling itching anymore the rest of this week, I felt nothing different. I drove and did everything I had been doing.

I am very hopeful. After only 1/2 of the planned RT, it has made a difference. It was a year and 8 months ago that I noticed the first nodule. More and more nodules developed and mild contracture in my pinkie and thumb - about 10 degrees - was released by Dr. Denkler with NA in March. I am aggressive in prevention and RT is the only thing out to stop it. I now know not to wait so long for RT and will have it on my left hand as soon as Dr. T recommends it.

Scripps is state of the art. I live between Loma Linda University Medical Center and Scripps. This is my first personal experience at Scripps and I am very impressed.

Scripps is getting more and more Dups patients for RT. This website let me know that RT at Scripps was an option. So far, so good!

Hi Diana,

Glad you worked something out for RT at Palo Alto. That is much closer to you and others. Adding to the list on this site gives people options. It's encouraging to see the list grow.

About the lump on my wrist - my GP thought possibly a ganglion cyst. Dr. T thought it felt like fatty tissue and it feels soft like that to me, too. (Just what I need, fat deposits on my wrist!) At this point, I feel OK about watching it to see what it does. Dr. T mentioned possibly an MRI. The lump is shallow, long and very soft. It is strange, but so is Dups in the way it acts. I really don't know.

When do you have your second series of RT? At my appointment with Dr. T last Monday to start RT, he mentioned that he would see how it looks after this next week. He alluded to doing more if it is needed.

Good luck with your RT.

Flora

My finger and hand hurts some but I don't think anymore or less than before the radiation. Sometimes I think it is easier to bend my finger and other times it seems just the same so I don't know if the radiation helped or if it is too early to know.

We are going to follow the German protocol and wait 3 months to see if we will do another round of radiation. That means I will go back in October. I have an email and question to Newman asking him how Prof. Seegenschmiedt determined whether he needed another round but have not heard back. I think he is on vacation but hopefully he can reply before Oct!

No one at the clinic seemed to think that I needed any type of special lotion as they said that it wasn't that much radiation (3Gys 5 days in a row). They do recommend an aloe vera lotion for their other radiation patients, probably because of the red skin etc. but the nurse didn't know anything about a lotion containing urea which I believe helps with penetration so I'm just using the lotion we already have - Aveeno mostly.

Lori, I'm curious - how may Gys was your first treatment?

Diana

Diana,

I had 3Gy for 5 days in a row. I will return 8/17th the 6th week for the next round. When you said 90 days for your return treatment I checked the literature on RT on this site to see why I was returning so soon at 6 weeks. You might want to check the literature because it recommends you return typically around 6 weeks.

I must say that today the cord and nodule are smaller. YEAH! an unexpected result. Hope it remains smaller. The pain is gone today and my hand feels and looks fine.



Regards,


Lori

Thanks Newman. For some reason I did not get your email.

Based on what you said, probably I'll choose to have the additional 5 days of treatment if my nodule/cord don't shrink in size.

Hope you are having a great vacation.

Diana