| Lost password
284 users onlineYou are not loggend in.  Login
Some questions, help if you can
 1 2
 1 2
04/30/2010 20:20
David26

not registered

04/30/2010 20:20
David26

not registered

Some questions, help if you can

I appreciate all the information I've learned from this website and message board. A wonderful site and great help from others. I do have some questions below. If you can offer any insight on any of them it would be great. I'll number them to help with any responses.

1. What is the RT threshhold (Gy?) when the area probably can't be radiated a second time if there ever should be a need?
2. Is the RT doc essentially your only doctor if you elect to get RT? It is strange because I suppose they are limited in their knowledge of Dups and, in my case the two ASSH surgeons I've seen advised against RT and said to come back when the contracture is worse, so they are out of the picture for now.
3. I note many of the RT protocols provide 2 weeks (2x5 days) of treatment. How do they determine the exact area to radiate? Is there a CT scan and is this done as part of the first day or would that be a separate visit. In my case I will have to travel a good distance for RT treatment so it makes a difference.
4. One of the hand surgeons prescribed me a lecithin gel (Pluronic Lecithin Organogel) which appears to be some sort of scar compound. I assume this is worthless although I have been applying for one hour daily.
5. Do most of the folks who get RT have the "diffuse/diathesis" version of Dups, in other words more aggressive, multiple nodules, etc?
6. My problems just started a month ago. The first 3 weeks I had a burning in my palms and soles of my feet. My hand Dr. termed it a flare reaction. Not so much painful but bothersome. That has now calmed down considerably. Also my two large nodules aren't quite so tender now. I don't see/feel any lumps on my feet so far but with the clear "burning" going on down there I wonder if they will have problems. Would they typically also scan the feet to see if there are small nodules that can't be felt at this time? I would hate to have them pop up a couple of months after I travel for RT.
7. Just wondering if the RT penetrates the bones in the hand? Not sure how that works.

05/01/2010 05:08
wach 

Administrator

05/01/2010 05:08
wach 

Administrator

Re: Some questions, help if you can

Hi David, I will try answering some of your questions (see below A:).
Wolfgang

David26:
...
1. What is the RT threshhold (Gy?) when the area probably can't be radiated a second time if there ever should be a need?
A: usually not more than 30 Gy are applied to a specific area.
2. Is the RT doc essentially your only doctor if you elect to get RT?
A: Your disease must be diagnosed before you get treatment. Diagnosis doesn't have to be done by the RT doctor. Some of them, especially in Germany, are actually pretty experienced with Dupuytren's and Ledderhose but your are right, many see MD/ML only occasionally and mostly treat cancer.
3. I note many of the RT protocols provide 2 weeks (2x5 days) of treatment. How do they determine the exact area to radiate?
A: depends on the clinic and the type of radiation. X-rays have a different depth profile than electron beams. For x-rays palpation or ultra-sound is sufficient, for electron beams clinics sometimes use CTs to exactly determine the size of the nodule.
4. One of the hand surgeons prescribed me a lecithin gel (Pluronic Lecithin Organogel) which appears to be some sort of scar compound. I assume this is worthless although I have been applying for one hour daily. A: ?
5. Do most of the folks who get RT have the "diffuse/diathesis" version of Dups, in other words more aggressive, multiple nodules, etc? A: ?
6. My problems just started a month ago. The first 3 weeks I had a burning in my palms and soles of my feet. My hand Dr. termed it a flare reaction. Not so much painful but bothersome. That has now calmed down considerably. Also my two large nodules aren't quite so tender now. I don't see/feel any lumps on my feet so far but with the clear "burning" going on down there I wonder if they will have problems. Would they typically also scan the feet to see if there are small nodules that can't be felt at this time? I would hate to have them pop up a couple of months after I travel for RT.
A: Depends on the clinic. Usually feet are examined as well but I wouldn't like to have a CT without having nodules there. If you can feel nodules it might be too early to have RT.
7. Just wondering if the RT penetrates the bones in the hand? Not sure how that works.
A; Depends on the radiation. X-rays go right through the hand, electron beams have a more confined profile (that's why you need to determine the exact location of the nodule before applying ebeams).


Edited 05/01/10 08:11

05/01/2010 05:24
LubaM. 
05/01/2010 05:24
LubaM. 
Re: Some questions, help if you can

David26:
I appreciate all the information I've learned from this website and message board. A wonderful site and great help from others. I do have some questions below. If you can offer any insight on any of them it would be great. I'll number them to help with any responses.

1. What is the RT threshhold (Gy?) when the area probably can't be radiated a second time if there ever should be a need?
2. Is the RT doc essentially your only doctor if you elect to get RT? It is strange because I suppose they are limited in their knowledge of Dups and, in my case the two ASSH surgeons I've seen advised against RT and said to come back when the contracture is worse, so they are out of the picture for now.
3. I note many of the RT protocols provide 2 weeks (2x5 days) of treatment. How do they determine the exact area to radiate? Is there a CT scan and is this done as part of the first day or would that be a separate visit. In my case I will have to travel a good distance for RT treatment so it makes a difference.
5. Do most of the folks who get RT have the "diffuse/diathesis" version of Dups, in other words more aggressive, multiple nodules, etc?
6. . Would they typically also scan the feet to see if there are small nodules that can't be felt at this time? I would hate to have them pop up a couple of months after I travel for RT.

1. I had RT on left hand (multiple nodules, but no contracture) and bottom of left foot, 3Gys per day on each , 2 weeks M-F for a total of 30 Gys on hand and 30 Gys on foot, with Dr. Tripuraneni at Scripps in LaJolla,CA. According to Dr. T. that dosage is low enough that it can be repeated another time if needed.

2. I had two surgeons that also told me to wait, and two other surgeons totally opposed to RT (as well as NA) before I found this forum and opted for NA on my right hand. My opinion and advice to you, is DO NOT wait for the contracture to be worst. Go for RT if you are at the beginning stages of Dupuytrens or for NA if there is any contracture.

3. I had a CT scan done on both hand and foot before the RT, so that they know how deep to radiate. In my case, I had the original consultation with the Dr. one day, they did the CT scan that day and they did the "mapping" to determine the area to be radiated. I came back the following week on a Monday and stayed in the area for two weeks for the treatments. Stayed in a hotel nearby since I live 3 hrs. away.

6. I would imagine they would not radiate your feet unless there are nodules present. Dr. T. is of the opinion that RT is only effective if there are nodules present and there is proof of active disease, i.e. itching, increase in size of nodules, etc... other Drs. might have different opinions.

I opted to do RT on my left hand before any contracture occured, because I had the experience with my right hand where I had a contracted pinkie with a severe contracture in the PIP joint, which is the hardest to correct. On the right hand I've had NA twice and wish I had done RT in the early stages of the disease.

Where do you live and what Dr. are you considering for your RT?

05/01/2010 14:42
David26

not registered

05/01/2010 14:42
David26

not registered

Re: Some questions, help if you can

thanks Wolfgang and Luba

I live in Alabama. Charlotte (Dr. Crimaldi) is closest at 400 miles. Richmond (Dr. Weiss) at 700 miles.
San Diego would be a little more expensive with flight and rental car.

The thing I am trying to figure out is whether it could all be done in one 2 week visit or if the scan/mapping requires a separate visit. If so, that might knock San Diego out for me.

I've been diagnosed with DD. My hand doc here in Birmingham is Ekkehard Bonatz who has a good reputation but I assume like many surgeons, is against RT.

05/01/2010 22:02
newman 
05/01/2010 22:02
newman 

Re: Some questions, help if you can

Hi Australia Calling, I'v had Low dose RT for both my hands and feet. EDUCATION is the problem. What is needed is a broadening during the training of medicos. Most surgeons do not have have much to do with Oncology. Most of society has a general idea that RT is used to treat cancer and have no knowledge of the other use to treat Non Malignant Disease. There needs to be education from the Oncologists to the Surgeons. This is probably unlikely once they are out in their field of Surgery.
For interest sake in Germany they treat many thousands of patients annually covering up to 29 different Non Malignant Diseases with low dose RT. Regards

Edited 05/02/10 01:04

05/02/2010 14:59
flojo 
05/02/2010 14:59
flojo 
Re: Some questions, help if you can

Hi David, I also had Dr. T at Scripps in San Diego for RT on my right palm - multiple nodules and evidence of it being active. I live 1 1/2 hours away and went down for a separate mapping appointment. Because of my schedule, I waited about 3 weeks to start RT.
You can call them and ask about the possibility of scheduling the mapping early one day and starting RT that afternoon. I really don't know, but I think it would take longer to make the metal plate that has holes in it where the electron beams can go through to the nodules in the hand/palm based on the mapping. It wouldn't hurt to ask. They do try to work with you on your schedule as much as they can.
I am glad that I was able to get electron RT because they can control the depth that the beams go. The CT was used to determine the depth of the nodules related to the bones. Electron RT is done other places than Scripps, I'm sure.

I have seen good reports on this Forum about Dr. Crimaldi in Charlotte.
If you ask radiologists closer to where you live, you may find one who does RT for non-cancerous conditions. If so, they know radiation so they could research (or you could give them info about your research) about the protocols for RT for Dupuytren's. Others have posted on this site how they found their radiologist, educated him relative to Dupuytren's and had successful RT.

05/02/2010 17:33
LubaM. 
05/02/2010 17:33
LubaM. 
Re: Some questions, help if you can

David,
Flojo made good suggestions...if you are able to arrange for a mapping appt. just before the treatment at Scripps, I can suggest a very good hotel, right on the ocean in Del Mar, CA (only 4 miles from Scripps) that offers special rates for Scripps patients. In Nov. I only paid $69 a night (with breakfast). The other possibility would be to have the mapping appt. on a Friday and start treatment on Monday after the weekend. You would be only 20-25 min. from San Diego, fun place to be on the weekend.

Hope this helps,
Luba

Edited 05/02/10 20:35

05/02/2010 22:09
David26

not registered

05/02/2010 22:09
David26

not registered

Re: Some questions, help if you can

I would be lost without this website, there is much good info, I've only read back about 12 pages or so on the board and plan to keep reading. Also, having a problem opening photos in the posts. Anyone else experiencing that?

05/03/2010 21:30
Gweneth 
05/03/2010 21:30
Gweneth 
Re: Some questions, help if you can

Dr. T at Scripps will do the mapping on a Monday morning and start RT that afternoon, at least for out of state patients. However, you will require a separate appointment for the inital consultation. Any insurance has to be approved betwen the initial consultation and the mapping appointment.

05/04/2010 00:25
David26

not registered

05/04/2010 00:25
David26

not registered

Re: Some questions, help if you can

Does Dr. T do a scan of any sort? I recall some posts that said where he circled nodules based on a physical exam rather than a CT scan.

I wasn't aware a separate consult visit is required. Perhaps they would work with out of state people to work a consult, scan and first treatment in one day/

 1 2
 1 2
multiple   separate   considerably   treatment   radiation   non-cancerous   Scripps   essentially   appointment   nodules   threshhold   consultation   questions   surgeons   mapping   contracture   determine   experiencing   treatments   electron