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Consultation re: radiation therapy @ Scripps/La Jolla
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04/30/2009 02:48
flojo 
04/30/2009 02:48
flojo 
Consultation re: radiation therapy @ Scripps/La Jolla

I consulted with Dr. Tripuraneni, Head, Division of Radiation Oncology, at Scripps Clinic, La Jolla near San Diego, CA. He is very pleasant & thoroughly explained everything. Just because he explained everything doesn't mean that I thoroughly understood it all, but I will tell you my understanding and I think it is mostly accurate. His specialty is in non-malignant radiation treatment. He has primarily done a procedure in the heart - 2000-3000 of them. Info in Scripps pamphlet given to me about RT says, "It can also be used to treat non-cancerous conditions, including blocked coronary arteries."
I asked how and why he had an interest in Dupuytren's. Dr. T. was asked by a friend to treat his wife for Dupuytren's in her hand. Dr. T did and she put his name on this website. He has treated about a dozen who picked up his name from this site.
He sees a relationship with the results of the heart procedure and how RT works for Dupuytren's. Now, that I can't explain! He asked if my DD is active, still progressing. I told him it seems to be as I feel itching at times and more nodules have grown over the last few months. He says RT works when Dupuytren's is active. He was honest about effectiveness & said that it is effective for about 2/3s of the patients and not so effective for about 1/3. Those odds sound very good to me & certainly best to stop the progression because there is no other option.
One more appointment is needed to map the area for RT. Then a very low dosage with a total of 20Gy (whatever that is) given over 10 days, M-F for two weeks in a row Daily RT for about 3 minutes. No dryness or side effects likely.
He carefully looked at my right hand, felt for nodules and cording. I had NA done about 6-weeks ago which was the thing to do as RT will not release cords. He marked areas on my hand & took a picture of my hand with the marks. I pointed out what I thought were nodules outside the marked areas. He expanded to include a bit larger area. I asked if it extended into my little finger. He felt again and said, "I don't know. I'd rather under-radiate. We can always do it again and get that area if it is clear that it is Dupuytren's." He is conservative. I like that philosophy even if it means going through the whole thing again.
I definitely am going to do this and I'd do it sooner, but I don't have that stretch of time until mid-July. I called today to schedule it and expect to finalize that tomorrow.
I live about 80 miles away. Anyone living far away wanting to get RT with Dr. T might try to plan 2-weeks in San Diego. It's a great place to stay!
Once I found Dr. Denkler and communicated with him, I had no doubt that NA with him was the thing for me. I now have no doubt that RT with Dr. T is the thing for me. I thought about talking with a local oncologist about doing it, but it is worth the travel, etc. to have Dr. T with his expertise and experience to do it.
Any questions?

05/01/2009 13:44
lori 
05/01/2009 13:44
lori 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

No questions, great summary. Thanks Flora. I will keep in touch and update you as to my prgress and I am interested to see how yours goes.

My steroid shot seems to have stopped or slowed it down for now. This is the first time since last october that I have not seen growth or something new popping up.

Lori

05/02/2009 01:51
newman 
05/02/2009 01:51
newman 

Re: Consultation re: radiation therapy @ Scripps/La Jolla

Hi Australia Calling. You mention that your Oncologist has an interest in the treatment of Non-Malignant disorders and is on the conservative side. That's great and will instill confidence in you receiving the right treatment. He sounds very much like Prof Seegenschmiedt who explained exactly what you posted. Did you know ,you can contact the Dupuytren Society and obtain a pdf on the paper written by Seegenschmiedt which may be of interest. "Radiotherapy Optimization in Early Stage of Dupuytren's Contracture."I shows some sketches and the treatment procedure. The prof. has given permission for its use to members of the forum. Regards

05/02/2009 02:28
flojo 
05/02/2009 02:28
flojo 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

Hi Newman,
Thanks. I looked at the Dr. Seegenschmiedt's article. I agree, the info in the article is consistent with what Dr. Tripuraneni told me. I like the confirmation.

I am convinced that RT is what I need now. The odds are good that I will be in the % in which Dups regresses or at least will remain stable. If it happens to continue to progress, I'll just look at NA or other non-surgical treatments whenever needed.

I still feel that of all of the genetically connected diseases that I could get, I'll take this one.

05/02/2009 17:39
matt 
05/02/2009 17:39
matt 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

Hi flojo, your post brings up an important topic that I would like to see more discussion on. That is , most posts I have read on radiation suggest that it is only viable in early stages of DD, because it doesn't actually relive existing contractions. Now as someone who has had both multiple NA's and surgeries on both hands, this was not encouraging. But, I couldn't help but wonder that if I had NA to release what's there now, why couldn't I then follow up with radiation with the same (potentially) positive results as someone in beginning stages? When you mention radiation as the only option for you is that due to being a more advanced case, like me? Any idea on what Dr. Tripuraneni's opinion is on whether radiation can help a more advanced case? thanks, matt

05/02/2009 18:25
flojo 
05/02/2009 18:25
flojo 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

Your thinking is exactly what mine is - get the NA, release the cords/contracture and go for the RT to stop the progression.

I had NA first - in late March. The cords, contracture is released. I have multiple nodules in my palm that are active and growing. They just can't wait to become cords. That's why I want to zap them now!

I did not have advanced contracture - about 10-20 degrees, but it was clearly contracting. My thumb is the most involved which is rare and all fingers except my pointer have cords forming in the palm. So far, not any cords or contracture has occurred in the fingers except my thumb that was contracting toward the pointer finger and inward toward the palm. The contracture on my pinkie was at the joint where it joins the palm, the MIP(?).
I have had Dups for 1 1/2 years. I first noticed small nodules in October '07. It has progressed with lots of nodules more than contracture. That tells me that mine could become advanced rather quickly as those nodules keep growing. As I am always saying, this is some weird stuff!

I'm not sure what Dr. T would say. I asked him if I had waited too long and he said no. He agreed that in my case I was a candidate for NA first, then RT. I saw him after I had NA. It makes sense to me that a person could have beginning and advanced all in the same hand. To me, nodules are beginning stage and contracture more advanced. Depending on what degree of contracture would be more and more advanced. For example: contracture of up to 20 degrees = stage 1; 20-30 degrees = stage 2; 30-60 degrees = stage 3; 60-120 degrees = stage 4. This is my calculated guessing. I know it wouldn't release contracture, but I don't know why it wouldn't stop the progression of contracture unless the small dose they use wouldn't get deep enough.

Maybe one of the experts on this site will know better. Wolfgang? Newman? Others?

If I had 2-weeks in a row, I would start next week. I have an appointment June 11 for the planning, mapping of the nodules so they can make the lead cover with holes where the nodules are, etc. I hope to schedule the RT beginning right after the 4th of July. That's 2 months away, but if I notice contracture starting, I'm going to cancel stuff and go anyway.

05/03/2009 07:25
newman 
05/03/2009 07:25
newman 

Re: Consultation re: radiation therapy @ Scripps/La Jolla

Hi flojo Australia Calling,First I am no expert and have no experience with NA. In Australia and US the use of NA is only now starting to pick up pace. However, I did raise the question about 18 months ago "Can Radiotherapy be used in conjunction with NA?" Having had keloids treated shortly after surgery. It is not uncommon to have Rt in low doses (less than the treatment of dups) within 24 hrs of surgery for keloids.In my thoughts ,I wondered why Radiotherapy could not be used after NA within a suitable time when things may start growing again. You may well answer the question.We will all be waiting on your outcome. The cords that you have, do they run across the hand (thumb to little finger ) or from the wrist to each finger. I know ,when I had Rt the area irradiated was increased slightly, outside of the palpable area identified with the nodules. This allows for a margin ,where growth may be taking place but cannot be identified. When I had RT I was supplied with records of dose rates, a copy of all photos ,photostat images of the hand etc. just incase I need further RT at later time. It is a point you might consider.

05/03/2009 20:18
flojo 
05/03/2009 20:18
flojo 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

Hi Newman,
You are very helpful. Even if you don't think you're an expert, you are knowledgeable and always thinking about what the possibilities are. You help us all to be more discriminating in our examinations of our hands and more alert and tuned in to the nuances of this stuff. How long did we all have this stuff before we even noticed? I have no idea how long I had it sneaking around in my hand before I noticed.

Good idea about getting full documentation of my RT procedure. If that isn't something that they do anyway, I'll ask for it.

I didn't look as closely at my nodules until your query. I had thought they were just in the middle of my palm, but now that I look closer, my right hand looks different from my left hand in the fleshy/muscle part near my wrist. Now I'm thinking that where the fleshy part looks a little bumpy compared to my left hand, those are soft nodules almost up to the wrist. I hadn’t noticed because they are not as obvious as the ones in the middle of my palm.

The nodules at the base of my thumb seem isolated from the finger ones but one cord did go out toward my pinkie. It was contracting toward my pinkie and toward my pointer. My right thumb looks almost arthritic, but I'm quite certain it is Dups. There is a medium soft bump on the side of my thumb behind the web (on top of my thumb as opposed to the palm side). I asked Dr. T if it is Dups and he said, "I don't know, but I can't get to that." If that progresses or when I go for the planning appointment, I'll ask if a separate RT can get at it if it seems clearer that it is a Dups nodule. I can now feel what seems to be a cord deeper in the web between my thumb and pointer, but I have one very similar in my left hand. I don't know if it is normal, or it is Dups beginning in my left hand. You helped me consider this also, as I hadn't thought about all of this.

Another obnoxious thing about Dups is that we can't compare directly with each other because everyone's is so different - even one of our own hands doesn't compare with the other. It is so-ooooooo helpful to have input from others so that I/we know what to become suspicious about.

With Dups being so insidious, I can see why the earlier the RT the better - stop it before it figures out where else to go. It's like a blankety-blank gopher or mole. I'm hoping that RT will stop or at least slow the progress of mine.

Thanks for your help.

Flora

05/04/2009 01:07
Diana 
05/04/2009 01:07
Diana 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

Hi. I was diagnosed with Dupuytren's last month and have been scouring the internet to learn as much as I can. It appears as if radiation is the only thing that can help delay the progression. My issues are that the doctors where I live, also Santa Cruz, CA, have never heard of it and don't seem that interested in learning about it/don't trust it. I've called Scripps 2x and both times was told that "I should wait until the disease had progressed". I thought that the point of radiation was to get it early?!

From Flora's post, does Dr. Tripuraneni have enough experience - esp. if she was pointing out to him more nodules that he didn't notice at first?

If more of you out there have experience with him/Scripps I would really appreciate feedback.

The other questions are - since I'm in an HMO, I'm not sure how to get my (reluctant) doctors to recommend radiation. I think it might be less expensive to fly to Germany etc. than to pay for it in the states but haven't talked to anyone about the costs in the US except in VA where the doctor thought it cost around $12,000!

Thanks so much, Diana

05/04/2009 13:49
lori 
05/04/2009 13:49
lori 
Re: Consultation re: radiation therapy @ Scripps/La Jolla

Diana,

Hi,
Where and who in Virginia did you talk to? I live near Charlotte, NC and am looking for RT sources. I saw that the Virginia Commonweath University was on the RT list. I would prefer someone in Charlotte but am still calling around to see if anyone knows what I am talking about.

Thanks,

Lori

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