I was treated at Guildford too by Dr Shaffer - both hands had 2 x 5 days treatments with 8 week gap between treatments. During the 8 week gap another nodule appeared on one hand so this had only 1 week of treatment, This was in July and September and so far there has been no progression but no regression either as far as I can see. At the moment my hands feel rather 'tight' and hot. I don't know if this is the treatment working or not as yet. I'm sorry to hear the treatment didn't work for you, but its good to know that you found a great doctor for successful injection treatment.
Hi, I didn't expect or even hope for regression. My goal was to stop the progression. It did stop the progression and regressed a little, but over several months. It was very gradual - my grip go stronger, nodules softened some, but it stopped the progression. That's all I wanted. It's been about 3 1/2 years. Still no new nodules and the disease is arrested.
Now, the cords that were there are still there. RT doesn't work on cords, but no new ones are forming.
Hang in there. You may see improvement over the next several months.
When I consulted with Dr Weiss in June, she was uncertain whether RT would help my Dupuytrens as I present in an unusual way. I have very large, painful dorsal knuckle pads on the index, ring and pinkie or my right hand and the middle finger of my left hand. I also have nodules on the palm side of these fingers but no cords and no palmar nodules or cords. I have minor contracture in the index finger and middle finger and all affected fingers experience significant pain and loss of flexibility.
We tried RT anyway as hope springs eternal. The top side of the PIP knuckle of the right hand ring and pinkie fingers as well as the top side of the PIP knuckle of the left hand middle finger were radiated. The index finger did not seem active at the time and already had some contracture so it wasn't done. All fingers worsened during the 12 week interval between treatments. I finished the second round in the beginning of August and have had no improvement since then. I can't say for sure whether I've had progression either, but think my ring finger is much tighter when I open my hand than it was before. I am very discouraged but still think that the RT was worth the try. I will continue to research my options with the help of this forum. Thank you to all who post here. I tried to attach photos but unsuccesfully however if you click on the links below, you can download them.
dominic12:Well, i was looking for the same answer. Really liked the information shared by you guys. Thank you for sharing it online.
I guess you are not alone, I find it helpful. I always put into consideration all the methods and techniques available, well I just need to choose wisely and consult and expert for a best result.
As a safer alternative to radiation therapy, one may get the proton beam therapy (PB). I got it, PB, at Mass. General Hospital in Jan. 2012. As they say, "Proton therapy has theoretical advantages: It allows doctors to precisely target radiation to reach a certain depth in the body, which can reduce exposure and possibly mitigate side effects." "RT" on this site can be ambiguous. Some may use it to refer to PB, not sure which they got.
I was told my palm would be red and dry after, but thought it was temporary. Eleven months later it seems to still have that effect and may be permanent. My treated hand needs more skin lotion than my other hand. It made my nodes and cords less sensitive to pain afterwards. But hoping to get rid of my thick cords, after all, I opted for surgery two weeks ago. My hope is that having PB first will act to prevent the trauma of surgery from provoking more cords during healing. Hard to tell so far if having PB first helped or not. I'd like to treat my left hand too, not sure whether to use PB first or to wait till after surgery to use it. I want to see how my right hand comes out in a few months and discuss it with my doctors. It is an open issue, as far as I know -- both the merits of PB and the proper sequencing with surgery for bad cases like mine was. The cord in my pinky area was about the diameter of a standard Bic ballpoint pen.
you are the first one reporting on proton beam therapy. Did they explain to you why protons work better than electrons? Of course protons are heavier than electrons and the proton beam can thus be better focused. But is that of any benefit for Dupuytren's? Actually, most of the research for Dupuytren's has been done using x-rays which are by far more difficult to focus than electrons. The focusing and the better depth control are often mentioned as a benefit of electrons vs. x-rays but my feeling (!) is that this more applies to cancer therapy where you want to irradiate the tumor with a very high dose and do minimal damage to the surrounding healthy tissue. For Dupuytren's doctors usually use a lower dose and irradiate a larger area to minimize further growth. Therefore focusing is less of an issue and I can't see much benefit of using electrons or even protons. It might be more the fact that this kind of equipment is available for cancer therapy.
My impression from posts in this forum is that electrons are creating more damage to the irradiated skin than x-rays. Protons are probably similar with regard to skin damage (or worse?). Most people irradiated with electrons report a reddening of the skin while that seems to be rare with x-rays. I am not aware of any study comparing electrons with x-rays for Dupuytren's and I don't see why electrons or protons should work any better for Dupuytren's.
The big advantage of x-rays is that they are much cheaper. Unfortunately x-ray equipment is increasingly less available because RT is predominantly used for cancer treatment and here electrons seem to be the current standard. I don't recall of anybody in the US being treated with x-rays (forum users please correct me if I am wrong!).
Wolfgang
CollogenBuster:As a safer alternative to radiation therapy, one may get the proton beam therapy (PB). I got it, PB, at Mass. General Hospital in Jan. 2012. As they say, "Proton therapy has theoretical advantages: It allows doctors to precisely target radiation to reach a certain depth in the body, which can reduce exposure and possibly mitigate side effects." "RT" on this site can be ambiguous. Some may use it to refer to PB, not sure which they got.
I was told my palm would be red and dry after, but thought it was temporary. Eleven months later it seems to still have that effect and may be permanent. My treated hand needs more skin lotion than my other hand. It made my nodes and cords less sensitive to pain afterwards. But hoping to get rid of my thick cords, after all, I opted for surgery two weeks ago. My hope is that having PB first will act to prevent the trauma of surgery from provoking more cords during healing. Hard to tell so far if having PB first helped or not. I'd like to treat my left hand too, not sure whether to use PB first or to wait till after surgery to use it. I want to see how my right hand comes out in a few months and discuss it with my doctors. It is an open issue, as far as I know -- both the merits of PB and the proper sequencing with surgery for bad cases like mine was. The cord in my pinky area was about the diameter of a standard Bic ballpoint pen.
Re: "For Dupuytren's doctors usually use a lower dose and irradiate a larger area to minimize further growth. Therefore focusing is less of an issue and I can't see much benefit of using electrons or even protons."
Proton beams are advantageously focused for depth, not width. A wide area of my hand was treated, but the doctor tried not to hit tendon or bone, so as to avoid the typical collateral damage to the hand that occurs with X-rays. Skin cells are still collateral damage. Knowledge of the comparative merits of each method is still unfolding, as I understand it, and hard to come by. Experiments continue... Best,
Very strange to use PROTONS for Dupuytrens Disease ... !
CollogenBuster:As a safer alternative to radiation therapy, one may get the proton beam therapy (PB). I got it, PB, at Mass. General Hospital in Jan. 2012. As they say, "Proton therapy has theoretical advantages: It allows doctors to precisely target radiation to reach a certain depth in the body, which can reduce exposure and possibly mitigate side effects." "RT" on this site can be ambiguous. Some may use it to refer to PB, not sure which they got. ....
This report from you, CollogenBuster" sounds really awkward : protons are used to avaoid sensitive tissues in the brain or for radioresistent tumors in areas surrounded by critical normal tissue ! A dose of 30Gy is neither critical for the skin nore for the bone .... so use of protons for "radioprotection" seems to be an "overkill" of a non-existing problem!,
To use it for DD and LD would be a technological revolution and needs to be published in scientific medical journals: MGH has never ever published anything on DD or LD treated with radiotherapy ... you are certainly one of the first "experimental bunnies" they have tried to treat. Your - presumed - given explanation to hit only a selective layer of the hand and avoid both skin and bone is probably pretty wrong , as disease may also spread to the skin surface and to layers between the bones which requires to hit ALL layers with an effective dose. Morover the depth of this targeted layer across the hand palm may differ considerably from the finger area to the palm root. So what depth layer have they treated in Boston at MGH and how was the 3D-planning across the hand palm achieved ... ???
May be one of the RT doctors of the Dupuytren Society should comment upon this treatment report of CollogenBuster as it really sounds very strange to me!
You raise some interesting issues. That’s how I understood it, but it may not have been fully explained to me, or I may have misapprehended what was said. When I see my doctor again, I’ll ask for a clarification. Yes, it would be nice if a RT doctor would comment on this topic, I agree.
PROTONS have NO PLACE in Dupuytren or Ledderhose Radiotherapy
CollogenBuster:Dear Larry,
You raise some interesting issues. That’s how I understood it, but it may not have been fully explained to me, or I may have misapprehended what was said. When I see my doctor again, I’ll ask for a clarification. Yes, it would be nice if a RT doctor would comment on this topic, I agree.
PROTONS have no place in the treatment of a superficial structure like the palm or the foot sole; the only reason may be to charge a higher price .... ! All other techniques (low kilovoltage RT or low Megavolt-electrons) serve the purpose of the treatment much better !
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