spanishbuddha:

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scumble:

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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

Regarding your question:

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

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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

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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

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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

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.

I see. Thank you very much.

scumble:

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scumble:

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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.)'