| Lost password
178 users onlineYou are not loggend in.  Login
Scheduled for R/T next week - Worried about the whole thing
 1
 1
09/10/2013 22:06
Lowell 
09/10/2013 22:06
Lowell 
Scheduled for R/T next week - Worried about the whole thing

I am scheduled for my first R/T session next week at the University of Miami., Dr. Wolfson,......does anybody have any tips for me of any kind beforehand, during, or for afterward? They are going to lay me on my back with my hands extended over my head and tape my hands/fingers down (palms up) after I stretch them open as far as I can, and then zap me. For 5 days in a row.

Not sure how long he is going to wait to zap me again......heard on the fourm 8 weeks, 10 weeks, 12 weeks, even 16 weeks, any input about this? What is optimum in the latest research?

Also, they mapped out an area in both my hands, essentially in the middle of my crease in my palms where nodules and chords can be felt (a farily small area as it relates to the whole hand and fingers)....

I am worred that they are not going to get it all, as also my thumbs ache and my fingers ache if I move them a certain way (not sure what's going on there or what's that all about (but that has me worried too).

What about all those invisible possibly developing nodules and chords around my whole hand------are they going to be missed? Or will I just have to get another R/T treatment down the road if they do indeed develop.....(that would not be good I guess (to keep getting radiation----True?

09/11/2013 03:19
callie 
09/11/2013 03:19
callie 
Re: Scheduled for R/T next week - Worried about the whole thing

Sounds like quite a process. I held my hand flat, they checked the exact position, then put the 1/4" thick mask over the area, then "zapped my hand for 30 seconds. I then walked out and they did it again the next day for five days total. This took about five minutes total time each day. They "zapped" my entire palm and up to the PIP joint of all fingers.

The process is so simple it would be difficult to give you any information to think about.

Edited 09/11/13 06:20

09/11/2013 11:22
ell 
09/11/2013 11:22
ell 
Re: Scheduled for R/T next week - Worried about the whole thing

Lowell, I know the concept of radiation is scary but it is a pretty simple procedure. Like Callie, I also stood and put my hand palm up on the table. They had made a block that they lined up, taped the bolus over my palm and the zapping took around 90 seconds per palm. It does seem a little convoluted that they're making you lay down, maybe that has to do with they're machinery.

They radiated a large area of my palms up to below the PIP joints of my 4 fingers. If you are worried that the area mapped out isn't large enough, it might not hurt to talk to your doctor about it before the treatment starts. My doctor said the RT can definitely be repeated, but prefers to wait at least 12 months.

Side effects were pretty minimal for me. My palms actually seem more dry and flaky (not bothersome) 5 months post RT but dr says it can continue to work for 6-12 months. I wish you the best of luck and let us know how it goes!

09/12/2013 11:40
JohnG 
09/12/2013 11:40
JohnG 
Re: Scheduled for R/T next week - Worried about the whole thing

The patient experience during RT is about the same as getting an x-ray. It is quick, generally comfortable, and you walk out 2 minutes later feeling exactly the way you felt when you came in. Completely unlike surgery.

As to whether the treatment will expose all your diseased tissue, it will certainly go deep enough. Whether it will go wide enough depends on the "field" or perimeter that they chose to irradiate.

09/14/2013 23:40
Jamiesara 
09/14/2013 23:40
Jamiesara 
Re: Scheduled for R/T next week - Worried about the whole thing

Im 25 and I just found out I have depuytrens and my ortho doctor said that there is nothing that I can do until my fingers are curled. He told me this over the phone and wouldn't even give me an actual appointment for a month. I live in portland Oregon and there are no radiation options here but from everything I have read I feel like radiation is the best option. I have a nodule in my palm and can see chords. It appeared 5 days ago before that my hand was completely normal. Yesterday I started noticing bumps in my other hand that you can only see and feel when my hand is relaxed. I called two of the radiation specialist offices from this website and New Jersey was one that's where I am from. I talked to sue Dylan and she was amazing and comforting. I don't know what is right but I am putting all my faith into this radiation helping me and am also about to put every penny I have in the world into it. If I were you I would call the place in New Jersey.

09/16/2013 15:18
lori 
09/16/2013 15:18
lori 
Re: Scheduled for R/T next week - Worried about the whole thing

Lowell,

If you go to the treatment heading and look under Radiation and then overview, you will see my hand. It shows the area that was marked for radiation and you will see exactly how they treated my hand. I know I was nervous the first time.

good luck and let us know how the first day goes.

Lori

01/22/2014 18:30
FisherPete 
01/22/2014 18:30
FisherPete 
Re: Scheduled for R/T next week - Worried about the whole thing

Jamiesara:
Im 25 and I just found out I have depuytrens and my ortho doctor said that there is nothing that I can do until my fingers are curled. He told me this over the phone and wouldn't even give me an actual appointment for a month. I live in portland Oregon and there are no radiation options here but from everything I have read I feel like radiation is the best option.

From what I understand, Dr. Cha at Providence on NE Glisan street does radiotreatment of DD.

 1
 1
Worried   radiation   radiotreatment   depuytrens   Scheduled   definitely   essentially   Completely   appointment   fingers   hand------are   beforehand   understand   treatment   everything   comfortable   information   convoluted   University   radiation----True