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Advice please re. RT for Dupuytrens, & the rest
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08/30/2021 15:49
spanishbuddha 

Administrator

08/30/2021 15:49
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

scumble:
SCUMBLE wishes to respond, but something wrong with this page and can't post. Will try again tomorrow. Apologies.
Possibly too many words altogether or quoted.

    08/30/2021 16:02
    scumble

    not registered

    08/30/2021 16:02
    scumble

    not registered

    Re: Advice please re. RT for Dupuytrens, & the rest

    spanishbuddha:
    scumble:
    SCUMBLE wishes to respond, but something wrong with this page and can't post. Will try again tomorrow. Apologies.
    Possibly too many words altogether or quoted.


    Edited 08/31/21 08:30

      08/31/2021 07:29
      scumble

      not registered

      08/31/2021 07:29
      scumble

      not registered

      Re: Advice please re. RT for Dupuytrens, & the rest

      scumble:

      SCUMBLE by the way is a technique used in oil painting, my own field of knowledge.

      My thanks to Professor Seegenschmiedt for his time. My response follows:

      Re. (1)
      LACK OF CLINICAL EXPERIENCE
      I live in a country where the disease is known of but rarely seen. Yes, there is less clinical experience, including lack of PALPATORY DISEASE DETECTION. Therefore both CT scans and MRI were used to build a computer simulation before treatment.

      RADIATION PORTALS TOO SMALL OR DOSE TOO LOW
      I do not think errors in the oncologist's calibrations are likely. The correct protocol, including your papers, was studied and applied. However, you very reasonably ask to SEE RT PORTAL USED and CHOSEN RT PROTOCOL regarding the ANATOMICAL RELEVANT AREA. I will provide copies of these, together with plans for the next procedure. This will take a little time.

      SCUMBLE'S HISTORY
      YES, DD first seen in FINGER ONLY, in 2016. A cord formed between PIP and DIP joints. So the finger began to bend forwards and outwards from PIP joint. There was nothing at MCP, nor in the palm. But there was no palpatory examination, because there are no specialists here. I diagnosed DD myself.

      In 2017 a Korean orthopaedic consultant recognised the disease and applied cortisone injections to the palm below the finger. DD tumours then quickly extruded from the site of the injections. I was not aware of disease in the palm before this. I believe the nodules were already incipient, and provoked by the injections.

      Re. (2)
      TIMING AND PRACTICE OF SURGERY INAPPROPRIATE
      I work in a university in Seoul and can travel only between semesters and for brief periods. So I arranged RT here, starting in 2018. RT was applied to the palm nodules, but not the finger. The finger had reached a contraction of 30°, too late for RT. RT was given to the palm of the left hand, and to LD tumours in the right foot, which had appeared 12 months earlier.

      I wished to consult a specialist in Europe. The English surgeon was recommended by advisors on this site. We first met 3 months after my 2018 RT session. Excision of the cord was indicated, because the cord was too slender for NA or collagenase. I chose the surgeon for his knowledge of dermofasciectomy, to prevent recurrence. He dismissed the nodules in the palm as unimportant. I told him there had been RT to the palm, not the finger. On the day of surgery, having dealt with the finger, he decided to intervene in the palm anyway. This was a plain zig-zag fasciectomy that might have been done by any hand surgeon. In follow-up, he was surprised at the speed of the healing. He believed I'd had RT both to finger and palm. He generally did not seem to listen to anything, or read emails. He said my recuperative power showed there was no need to worry about surgery to areas that previously received RT.

      TODAY: no more activity from DD nodules in palm. The skin is dry secondary to RT. This may be permanent. The finger is still twisted downwards and outwards from the PIP joint, but not to the same degree. There seem to be more 'diffuse' DD cords around the surgery scar, hence still some contraction. There also appear to be dorsal nodules. But it is stable. Overall, function is not very compromised. I attach hand pictures.

      As to the feet: LD on right is stable after RT in 2018. LD on left included one tumour, again in an unusual position, on what I think is the plantar calcaneonavicular ligament. RT was applied in 2019, and tumours shrank slightly. Again, skin has been dry since RT. But on the left, new LD is now active, about 4cm closer to metatarsal head.

      Re. (3)
      APPROPRIATE DETECTION & PLANNING
      The oncologist is as well-informed and capable as any practitioner anywhere, and I mention his use of scanning. This was how diagnostic assessment / confirmation was made. If your RT portals now depart from previous practice, I will direct his attention to this.
      CLINICAL SIGNS and SYMPTOMS in both feet: I have several problems separate to / exacerbated by LD, eg navicular accessory syndrome, other structural deformities, now causing trouble owing to age. Also other kinds of benign tumours; cysts, bunions, osteoarthritis.

      Re. (4)
      Thank you for your kind offer of video consultation. I will email you as soon as I obtain the RT data. My chief requirement of the English surgeon was to provide the coherent overview needed to dispel the 'hill of doubts.' He did not. He seemed uninterested in history and context, and did not answer questions. The Korean consultants, despite little DD experience, are far more curious, responsive and dependable, and I wish I had left the surgery to them.

      May I put one question to the Professor on the forum? Regarding LD, Dr. Shaffer in the UK told me that the interval between onset of symptoms and RT need not be limited to 12 months. This does not accord with what I read elsewhere, for example in your own research. What is your current view?


      Edited 09/04/21 14:41

        08/31/2021 08:33
        Prof.Seegenschmiedt 
        08/31/2021 08:33
        Prof.Seegenschmiedt 

        Re: Advice please re. RT for Dupuytrens, & the rest

        Regarding your question:

        ARE THERE ANY LIMITATIONS TO PRACTICE RADIOTHERAPY DURING "PROGRESSION" ?

        -----------

        PART ONE :
        WHAT is meant to be "PROGRESSION" - The TIME COURSE ?


        DD or LD may progress very slowly - especially in populations beyond 60 years - and may not lead to significant changes in daily activities and functions of hand palms or foot soles ....

        --> These patients may not need RT for a long time, often times - without doubt - even never at all.

        However, if DD or LD progress quickly - e.g. in younger individuals below 40 years -
        and lead to significant changes in daily activities and functions of hand palms or foot soles ....

        --> These patients require EARLY ONSET of RADIOTHERAPY within 3 - 6 months after a critical observation
        ("wait & see strategy" until final PROOF OF PROGRESSION has become obvious) -

        These cases need generous RT portals which encompass not only small areas of "active disease"
        but should cover the whole palmar or plantar aponeurosis to avoid "out-field" relapses in the vicinity

        ----


        PART TWO :
        WHAT are CRITERIA OF PROGRESSION ? - Typical Symptoms & Functional Changes !


        Progression of DD & LD can be defined by a variety of OBJECTIVE and / or SUBJECTIVE CRITERIA:

        1. The symptom - NODULES
        --> increase of number of detected nodules, size of nodules and involvement of finger(s)
        any change of consistency of nodules (like from "soft" to "medium" or "hard").

        2. The symptom - CORDS
        --> any development of a first cord or new cords and any increase of the length of the cord

        3. The symptom - FINGER INVOLVEMENT
        --> any spread of new nodules and cords to the finger base or beyond into the fingers

        4. The symptom - CHANGE of HAND SURFACE PROFILE
        --> new development of wrinkles, folds, pit holes at the hand palm, etc.

        5. The symptom - CHANGE OF HAND and FINGER FUNCTION
        --> any increased tension or pressure feeling, increase of pain, itching or other sensations;
        change in function tests and developing finger "bending"; incomplete "tabletop test".

        6. SUBJECTIVE EVALUATION
        ---> change of symptoms subjectively graded on a visual analog scale of 1 - 10.

        7. OBJECTIVE EVALUATION using PHOTOGRAPHS and EXPERT's EXAMINATION & EVALUATION
        ---> Take photographs in defined intervals (e.g. every 3 months) under standard light conditions

        8. EXAMINATION BY A LONG-TERM EXPERIENCED PHYSICIAN

        ----

        PART THREE : Is radiotherapy still helpful beyond 12 months of progression ?
        My clear answer is "YES"


        My answer is pretty clear from the various explanations above : as progression may vary in a wide time range, no LIMIT is reasonable neither 3, nor 12, nor any time beyond 12 months - it is the EXTENT and TIME OF ONGOING PROGRESSION which determines the useful time frame for any radiotherapeutic intervention even after two or more years.

        We even treat LATE RELAPSES after 10 or more years if they demonstrate subjective and objective signs as listed above

        Special Video Consultation Request available --> prof.seegenschmiedt@gmail.com

        Edited 08/31/21 10:20

          08/31/2021 08:38
          scumble

          not registered

          08/31/2021 08:38
          scumble

          not registered

          Re: Advice please re. RT for Dupuytrens, & the rest

          Understood. Thank you again for a very complete answer.

            09/01/2021 15:52
            scumble

            not registered

            09/01/2021 15:52
            scumble

            not registered

            Re: Advice please re. RT for Dupuytrens, & the rest

            Just one more thing, as the man used to say. I'm seeing the oncologist tomorrow, sooner than expected. I've been checking through the material from Prof. S. He mentions RT portals now differing from previous practice owing to development of 'MRI & CT FUSION.' Could someone direct me to further reading on this, if available? If I've overlooked it on the site, I apologise for my laziness.

              09/01/2021 16:07
              wach 

              Administrator

              09/01/2021 16:07
              wach 

              Administrator

              Re: Advice please re. RT for Dupuytrens, & the rest

              That's referring to new technology, which is very useful for treating cancer, specifically in critical areas of the body, but not an ultimate requirement for treating Dupuytren's. I am not aware of any of the older X-ray devices having this feature but they nevertheless are as good as electron guns in treating Dupuytren's.

              Wolfgang

              scumble:
              ... RT portals now differing from previous practice owing to development of 'MRI & CT FUSION.'...


              Edited 09/01/21 17:55

                09/01/2021 16:15
                scumble

                not registered

                09/01/2021 16:15
                scumble

                not registered

                Re: Advice please re. RT for Dupuytrens, & the rest

                I see. Thank you very much.

                  09/06/2021 05:20
                  scumble

                  not registered

                  09/06/2021 05:20
                  scumble

                  not registered

                  Re: Advice please re. RT for Dupuytrens, & the rest

                  scumble:
                  I see. Thank you very much.
                  I have sent a letter to Prof. Seegenschmiedt which includes the following. I hope it is acceptable to share this.

                  'You characterize the problem of many DD/LD sufferers as "some internet-based knowledge, some individual scientific readings, a well-known RT recipe and a lot of mixed feelings and practices." In my case, it is true that no-one has provided an overview of care. But I am not sure the case is typical. I contracted this disease having emigrated to a country where it is almost unknown. Unhappily, internet-based knowledge was my only recourse. The disease is aggressive, in spite of my 60 years. I do not enjoy the means to return to Europe for regular monitoring by specialists. The Korean clinicians dealing with me have done all that can be reasonably expected of them, and they defer completely to your expertise.

                  'Again, LD appears active and, again, I have no immediate access to experts who could confirm this. I have zero medical training, but I do have repeated bodily experience of the disease. The latest nodule is close to the ball of the foot. I have failed to create a clear photographic record. But since its discovery eight months ago I believe it has grown in mass by at least 50%. Certainly, it is increasingly tender and sensitive to pressure. I would guess, then, that there are active fibroblasts, and Kairos presides over Chronos. The oncologist has only my testimony to work on, but a CT scan will be made before we proceed any further. He has shown me that the periphery of the previous field where the nodule is located received 25% of the dose in the centre of the portal. He respectfully wishes to understand your reasoning on the 15 Gy dose limit when a third dose is deemed practicable, and when this involves some overlap of the field.

                  'You state that INSIDE previously irradiated areas an additional 15 Gy can be applied given a discrete region of flare-up, and where skin conditions are not compromised. The oncologist wonders why a protocol that applies a slightly higher dose - say, 16, 21 or 24 Gy - would not be regarded as safe or effective. To illustrate, he suggests 8 x 2Gy, 7 x 2.5 Gy, or (7~8) x 3Gy. On the basis of his own experience in treating malignant and non-malignant disorders, he would have expected a dose in that range to be required under these circumstances.

                  'He and I are aware that the formula and limits you advocate were reached after decades of research, so you may wonder why the question is necessary. It is, simply, professional curiosity. I therefore would ask where we may read more about your determination of the advisory limit in cases where new tumours form in the distal section of a former RT field.

                  'Very gratefully yours, (etc.)'

                  Edited 09/06/21 06:33

                  Attachment
                  (2019) prep RT to L foot.jpg (2019) prep RT to L foot.jpg (3x)

                  Mime-Type: image/jpeg, 60 kB

                  2019 RT field.jpg 2019 RT field.jpg (2x)

                  Mime-Type: image/jpeg, 43 kB

                  2019 RT protocol.jpg 2019 RT protocol.jpg (4x)

                  Mime-Type: image/jpeg, 55 kB

                  (2021) L foot now - 2 nodules treated 2019, 1 new.jpg (2021) L foot now - 2 nodules treated 2019, 1 new.jpg (1x)

                  Mime-Type: image/jpeg, 78 kB

                  (2018) R foot before RT.jpg (2018) R foot before RT.jpg (2x)

                  Mime-Type: image/jpeg, 59 kB

                  (2021) R foot now.jpg (2021) R foot now.jpg (3x)

                  Mime-Type: image/jpeg, 76 kB

                  (2018) L hand pre-surgery.jpg (2018) L hand pre-surgery.jpg (1x)

                  Mime-Type: image/jpeg, 58 kB

                  (2021) L hand post-surgery apparent DD.jpg (2021) L hand post-surgery apparent DD.jpg (1x)

                  Mime-Type: image/jpeg, 52 kB

                    09/06/2021 05:52
                    scumble

                    not registered

                    09/06/2021 05:52
                    scumble

                    not registered

                    Re: Advice please re. RT for Dupuytrens, & the rest

                    scumble:
                    scumble:
                    I see. Thank you very much.
                    I have sent a letter to Prof. Seegenschmiedt which includes the following. I hope it is acceptable to share this.

                    'You characterize the problem of many DD/LD sufferers as "some internet-based knowledge, some individual scientific readings, a well-known RT recipe and a lot of mixed feelings and practices." In my case, it is true that no-one has provided an overview of care. But I am not sure the case is typical. I contracted this disease having emigrated to a country where it is almost unknown. Unhappily, internet-based knowledge was my only recourse. The disease is aggressive, in spite of my 60 years. I do not enjoy the means to return to Europe for regular monitoring by specialists. The Korean clinicians dealing with me have done all that can be reasonably expected of them, and they defer completely to your expertise.

                    'Again, LD appears active and, again, I have no immediate access to experts who could confirm this. I have zero medical training, but I do have repeated bodily experience of the disease. The latest nodule is close to the ball of the foot. I have failed to create a clear photographic record. But since its discovery eight months ago I believe it has grown in mass by at least 50%. Certainly, it is increasingly tender and sensitive to pressure. I would guess, then, that there are active fibroblasts, and Kairos presides over Chronos. The oncologist has only my testimony to work on, but a CT scan will be made before we proceed any further. He has shown me that the periphery of the previous field where the nodule is located received 25% of the dose in the centre of the portal. He respectfully wishes to understand your reasoning on the 15 Gy dose limit when a third dose is deemed practicable, and when this involves some overlap of the field.

                    'You state that INSIDE previously irradiated areas an additional 15 Gy can be applied given a discrete region of flare-up, and where skin conditions are not compromised. The oncologist wonders why a protocol that applies a slightly higher dose - say, 16, 21 or 24 Gy - would not be regarded as safe or effective. To illustrate, he suggests 8 x 2Gy, 7 x 2.5 Gy, or (7~8) x 3Gy. On the basis of his own experience in treating malignant and non-malignant disorders, he would have expected a dose in that range to be required under these circumstances.

                    'He and I are aware that the formula and limits you advocate were reached after decades of research, so you may wonder why the question is necessary. It is, simply, professional curiosity. I therefore would ask where we may read more about your determination of the advisory limit in cases where new tumours form in the distal section of a former RT field.

                    'Very gratefully yours, (etc.)'
                    Further to the above, the professor responded instantly and proposes a video consultation with both me and the oncologist. More later.

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