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03/15/2012 01:54
robi516 
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03/15/2012 01:54
robi516
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Another Newbie to the Forum
Hello fellow Dupys:
I am new to this forum, having only been formally diagnosed with Dupuytrens two weeks ago. I am a 57 male of Scottish ancestry. I play a lot of golf, and about 2 years ago I started noticing a lumpy growth on my left palm, below my ring finger. I figured it just some kind of callous or calcium deposit, and it didn't hurt, so I just ignored it. But it continued to get larger, and about a year ago I started feeling a cord moving from the nodule into my palm. I still continued to ignore it as it really didn't affect my golf grip. Then about a month ago I saw a commercial on TV for Xiaflex, and it finally dawned on me that the alien on my left hand was not just a callous. I "googled" Dupuytrens, and lo and behold I knew what the problem was. I had it confirmed by my GP two weeks ago.
I am agressively pursuing treatment options, and am leaning towards RT to at least stop the progression. I hope to learn much from other forum, and will be sharing my experiences with you.
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03/15/2012 02:37
flojo 
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03/15/2012 02:37
flojo
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Re: Another Newbie to the Forum
"Alien" in your palm - well said!
Sounds like active Dups and you're already considering RT. Keep on researching, use "Search forum" in left column for others' experiences, and keep coming back to ask questions. One of the hardest things to determine is how long can/should you wait before treatment. How do you know when the "right" time is? Just so you know, we won't really be able to answer those questions, but hopefully we can help to make an informed decision by using our experiences.
I'm at the watching to see if it's time for RT in my other hand, my left hand. Had RT in my right hand and it was effective. Effective doesn't mean it looks like it did before Dups. For me, slowing the progression was my goal and stopping it was better. I think RT on my right hand was somewhere between slowing and stopping it. Like everything else about this weird disease, I don't know for sure.
Do ask specific questions so we can give you non-specific answers? Sorry, that's just the way it is :-)
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03/17/2012 18:56
robi516
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03/17/2012 18:56
robi516
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Re: Another Newbie to the Forum
Flojo, thank you for your response. Yes, this is a very weird disease. I still can't believe I have DD because there appears to be no family history of it. I am interested in your experience with RT. Like you, I can live with the damage that has already been done, but I really want to stop the progression. So far it is contained to my palm and not extending into my fingers, and I want to keep it that way.
I have a few questions for your regarding RT:
- did you have any adverse side effects?
- why did you do only one hand?
- did RT shrink or modify your existing nodules and cords?
- is it possible to follow up RT with collagenase injection to dissolve the existing cords/nodules?
- do you know what the RT treatment cost?
I live in Tampa, FL, and there is a local radiation oncologist here who has been treating DD for about two years. He has treated about a dozen patients and he says he is seeing very positive results. Anything you can tell me about your RT experience would be much appreciated.
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03/18/2012 04:43
flojo
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03/18/2012 04:43
flojo
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Re: Another Newbie to the Forum
Quote:
Re: Another Newbie to the Forum
I have a few questions for your regarding RT:
- did you have any adverse side effects?
- why did you do only one hand?
- did RT shrink or modify your existing nodules and cords?
- is it possible to follow up RT with collagenase injection to dissolve the existing cords/nodules?
- do you know what the RT treatment cost?
Hi, I did not have any side effects. Others have had very dry skin, but my skin, especially my hands, have always been so dry that I wouldn't notice. There was a little peeling just in the web of my thumb about a week after RT was over that I didn't notice until it was almost finished. No pain nor irritation.
I did on hand only because that's the only hand with DD at the time. The disease must be active for RT to work, so it is not done on tissue to prevent it from starting. I don't think I'd want to do RT to prevent DD since it might not ever do anything anyway. I want the least and lowest radiation no matter what, but it is worth it to me to stop the progression of DD.
RT did shrink the nodules, some went away for good. I can't say that it shrank any cords, but it at least slowed some of them and maybe stopped them. There is a very good chance that you won't have to worry about nodules after RT. Even if they don't shrink completely but stop progressing, that's huge. Cords are another thing. RT doesn't work on cords as it is more like scar tissue - at least that's my understanding.
I don't know about Xiaflex after RT, but you can certainly have NA afterwards. I had NA about 5 months before RT. I had NA again 2 years after RT. It released the cords, tightness, and some early contracture - about 15 degrees. You have Dr. Eaton right there in Florida who is one of the best in the country for NA. I'd highly recommend that you consider him for NA to release your cords possibly before RT or after RT if needed. He is a hand specialist and has specialized in Dupuytren's for years. He was the first in this country to do NA. He doesn't do Xiaflex unless he recently started, and he doesn't do RT.
My DD started in the thumb, but developed in primarily in the palm. My whole palm needed RT and it stopped/slowed the progression. More than a year later, and again 3 years later, I had nodules form outside the radiated area on my little finger and my middle finger. It isn't causing any contracture yet, so I'm just watching. If there is any luck with this disease, I'm thinking that you and I may be are lucky to have it in the palm rather than the fingers. Contracture is difficult to release on some finger joints.
RT isn't cheap. I think it varies with the radiation department. If you have insurance, check with them. My BCBS would pay, but Medicare is my primary. Medicare paid for the big ticket item, the actual radiation, but they denied the radiologist's charges. Try to figure that one out. I think someone reported on this Forum that Medicare paid for their RT. It seems that most people have reported that their insurance paid. Quite a few people who don't have insurance have gone to Germany for RT and it was much cheaper even with two trips and staying a week each time. And, Dr. S is one of the best in the world.
I have 2 brothers, neither of whom have DD. Neither parent had it. I have one niece whose little finger is contracted at the PIP joint. It seems to be staying just the same so far.
Hope this helps. Ask if you have more questions.
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03/18/2012 06:34
wach  Administrator
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03/18/2012 06:34
wach Administrator
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Re: Another Newbie to the Forum
RT and collagenase work on different stages of this disease and on different tissues. RT works predominantly on nodules (on active myofibroblast cells) while collagenase work on collagen which is the main constituent of cords. RT is applied before contrcature starts while collagenase is applied to reduce eor eliminate existing big contractures (> 30 deg).
Should you develop contacture after RT there ought to be no problem to inject collagenase. The RT does not affect collagen which is the target for collagenase.
Wolfgang
robi516:
Flojo, thank you for your response. Yes, this is a very weird disease. I still can't believe I have DD because there appears to be no family history of it. I am interested in your experience with RT. Like you, I can live with the damage that has already been done, but I really want to stop the progression. So far it is contained to my palm and not extending into my fingers, and I want to keep it that way.
I have a few questions for your regarding RT:
- did you have any adverse side effects?
- why did you do only one hand?
- did RT shrink or modify your existing nodules and cords?
- is it possible to follow up RT with collagenase injection to dissolve the existing cords/nodules?
- do you know what the RT treatment cost?
I live in Tampa, FL, and there is a local radiation oncologist here who has been treating DD for about two years. He has treated about a dozen patients and he says he is seeing very positive results. Anything you can tell me about your RT experience would be much appreciated.
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