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Radiation in San Diego
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12/20/10 22:25
Larry 
12/20/10 22:25
Larry 
Relapse after radiotherapy and RT protocol applied ...

flojo:
I had RT and would say that it worked for me. It significantly slowed the progression of very active DD in most of my right hand. Small areas outside the radiated area flared up again.
I am glad I had it done. Nobody can know for sure, but I think I would be looking at surgery by now if I had not had RT.


It is of utmost importance to understand the exact scheme of radiation therapy given to you as well as the exact location where the progression occured related to your former radiation fields, as there are published differences between the different which Keilholz et al. described in their 1995 publication ! Certainly the German specialists would give you further advice due to their long-term experiences which Scripps / La Jolla probably do not have ... Larry

01/07/11 00:19
newman 
01/07/11 00:19
newman 

Re: Radiation in San Diego

Australia Calling. Hi I support what Larry has posted. When I had the Radiotherapy on hands and feet in Germany,Prof. Seegenschmiedt took digital photos of each set up ,just prior to the intial treatment. This enabled the following daily and subsquent treatment months later to set up per the photo. At the end of the treatment I was supplied a treatment report which contained copies of all the photos for my records. It was very professional . Service with a smile.

Edited 01/07/11 07:07

01/07/11 03:41
flojo 
01/07/11 03:41
flojo 
Re: Radiation in San Diego

If I could, I'd certainly want to go see Dr. Seegenschmiedt. Does he reply to emails from people other than his patients? Would it be beneficial to contact him by email? If so, what would I ask? I don't know enough to ask specific questions. I just knew that I needed to have RT done sooner rather than later.

Any thoughts?

10/17/11 12:37
homeboymi 
10/17/11 12:37
homeboymi 

Re: Radiation in San Diego

homeboymi:
Hi Everyone,

I have been diagnosed with Dupuytren's. My finger(s) haven't begun to contract yet but the dimple on my palm is growing larger. I have made an appointment to see the radiation person in La Jolla next Tuesday 11/17/09. Has anyone on this forum had radiation done by Dr.Tripunineni? I tried to email Flojo but she didn't reply. I would appreciate any information on this clinic. Thank you. Gary
It has been almost 2 years since I had the radiation treatment. My nodules are getting larger and painful. My fingers haven't contracted yet. If I had it to do over I would not radiate since there is a risk of cancer. I would wait for the contracture and have NA.
Do the doctors that do NA perform it on nodules? My nodules are painful and I am having trouble using my right hand.

10/17/11 14:28
spanishbuddha 

Administrator

10/17/11 14:28
spanishbuddha 

Administrator

Re: Radiation in San Diego

homeboymi:
homeboymi:
Hi Everyone,

I have been diagnosed with Dupuytren's. My finger(s) haven't begun to contract yet but the dimple on my palm is growing larger. I have made an appointment to see the radiation person in La Jolla next Tuesday 11/17/09. Has anyone on this forum had radiation done by Dr.Tripunineni? I tried to email Flojo but she didn't reply. I would appreciate any information on this clinic. Thank you. Gary
It has been almost 2 years since I had the radiation treatment. My nodules are getting larger and painful. My fingers haven't contracted yet. If I had it to do over I would not radiate since there is a risk of cancer. I would wait for the contracture and have NA.
Do the doctors that do NA perform it on nodules? My nodules are painful and I am having trouble using my right hand.

I don't believe NA is usefully performed on nodules. NA is typically done to cut cords allowing a finger to be straightened. Maybe a steroid or collagenase injection would help but you would have to ask an experienced physician.

Sorry to hear RT did not help you. I too have had RT, this year, and am awaiting some signs of success. Did you have the standard dose and schedule as per the 'German protocol'? I'm just curious as to why it works for some, the majority possibly, but not others.

10/17/11 18:52
Larry 
10/17/11 18:52
Larry 
Re: Radiation in San Diego

homeboymi:
homeboymi:
Hi Everyone,

I have been diagnosed with Dupuytren's. My finger(s) haven't begun to contract yet but the dimple on my palm is growing larger. I have made an appointment to see the radiation person in La Jolla next Tuesday 11/17/09. Has anyone on this forum had radiation done by Dr.Tripunineni? I tried to email Flojo but she didn't reply. I would appreciate any information on this clinic. Thank you. Gary
It has been almost 2 years since I had the radiation treatment. My nodules are getting larger and painful. My fingers haven't contracted yet. If I had it to do over I would not radiate since there is a risk of cancer. I would wait for the contracture and have NA.
Do the doctors that do NA perform it on nodules? My nodules are painful and I am having trouble using my right hand.


Did you ever tried to contact Prof. Seegenschmiedt in Hamburg ... as suggested by others ??

I know, that some people from San Diego had relapses and apparently the RT-protocol is different than the protocol from Germany, e.g 2 Gy single dose instaed of 3 Gy ...

Your statement : If I had it to do over I would not radiate since there is a risk of cancer. ... is truely nonsense! Do you wear white sunprotective gloves the whole day since you are born or since you know radiation may cause cancer ?? You live in California and Sun light is the most cancerogenic agent to produce cancer , 100 fold higher than radiation ! So how many people do you know who have been amputated because of cancer ... basically none !! Its an extremely rare risk.

As stated above: Certainly the German specialists would give you further advice due to their long-term experiences which Scripps / La Jolla probably do not have ... Larry

Edited 10/17/11 18:54

10/17/11 20:51
homeboymi 
10/17/11 20:51
homeboymi 

Re: Radiation in San Diego

I'm just reporting back to you people the results I had. It cost me about $2,000 out of my pocket for the radiation and my insurance company about $8,000. This is a lot of money spent for no results! I won't post anymore if all I get is negative feedback.

10/20/11 23:03
annmaiden 
10/20/11 23:03
annmaiden 
Re: Radiation in San Diego

Please do not give up on reporting your progress as I am very interested. I just finished my first round of RT and would like to compare notes. My treatment was 5 days 3gy per German protocal. Just because we have not had the RT in Germany does not mean it will not work or that it is any less then what we would receive there. Did your nodules seem larger after your first round (maybe due to swelling) as mine seem to be larger.
Treatment done on Lt. hand and Lt. foot. When I go back (6 weeks) they will do Lt. second round and right hand foot first round. Please let me know and anyone else who has had RT what was it like after your first round of RT.
Thank you and keep me informed:

10/25/11 01:10
flojo 
10/25/11 01:10
flojo 
Re: Radiation in San Diego

@ homeboymi,

I didn't get your message. Don't know what happened . . .

The RT protocol (3x5 days followed the following week by 3x5 days) done at Scripps helped my hand. It did not return to pre-Dupuytren's state, but it did stop the progression and formation of nodules or at least slow it significantly. My grip strength returned to almost pre-Dups level, stopped the itchiness/crawly feelings in my palm, nodules disappeared or shrank, and my hand continues show those differences. No new nodules formed in the radiated area. I do believe my Dups was at a very active stage as shown by the symptoms described above and it is critical that RT is done when Dups is active. It is a very personal thing. I am satisfied and pleased with the results that I still enjoy.

The cords that were there continued to contract. More cords have developed without nodules. I don't know why some cords appear without nodules and others seem to develop out of nodules. I had NA before RT to release cords and I had NA again in July (2 1/2 years after 1st NA and 2 years after RT) to release more cords. I anticipate that I will need NA periodically to release cords that are contracting. I'm OK doing that.

In my left hand, I have visible cords but no contracture yet. There is some tightness which I see as a precursor or very beginning contracture. It has been that way for over a year. A nodule developed on the palm side of my forefinger meta-carpal joint and another one on the finger side of that joint. That is not indicative of really being active Dupuytren's yet. I don't have the itchiness and my grip has not been compromised yet. I'm watching it.

I am very sorry that RT did not show lasting improvements. I don't know what to say. It is hard to know what to do and a lonely place to be, because no matter what, nobody can tell us what to do. We find out all we can and make the best decision we can based on what we know. There is a small % of people that RT doesn't seem to help, but the only factor I have heard mentioned is that it must be active. Maybe there are other factors that I don't know about.

The Scripps protocol worked for me. I was not pleased with the insurance department of Dr. Tripuraneni's office, but otherwise, I find them credible and effective.

I will send you an email message through this site, so watch for a number showing up beside the Private Messages across the top of the Forum page.

11/03/11 06:59
AnitaGullett 
11/03/11 06:59
AnitaGullett 
Re: Radiation in San Diego

Sorry i don't have any idea but i know one radiologist at Sarasota but he give services to other place also at Florida.if this help you then go for Dr. Grubbs.

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