| Lost password
1044 users onlineYou are not loggend in.  Login
New Activity AFTER Radiation Treatments
 1
 1
01/07/2020 18:23
harryzone 
01/07/2020 18:23
harryzone 
New Activity AFTER Radiation Treatments

Hi All

In October of 2018 I noticed some nodules in each hand. They seemed active and were bothersome. I had radiation treatments in Feb and Apr of 2019. Things seemed to settle down a few weeks/months after my treatments. This week however they seem to be "reactivated". They are itching and seem like they are getting ACTIVE again. And one particular nodule near the treatment line seems to be growing a bit.

My questions:
1) Has anyone experienced this same type of thing and what were the outcomes? If so, did you need or get further treatments?
2) Is this ABNORMAL for post radiation reaction within the first full year of treatment?

I thought I had this licked with the radiation treatments and now Im concerned that they didn't work for me. Would like any suggestions from other who may have gone through similar experiences.

Any help would be appreciated.

Harryzone

PS not real confident in my radiation doctors answers because Im not sure he marked off the proper margins for my original treatments

Edited 01/07/20 22:23

01/08/2020 19:48
spanishbuddha 

Administrator

01/08/2020 19:48
spanishbuddha 

Administrator

Re: New Activity AFTER Radiation Treatments

Hi Harry,

It’s not clear if the activity you are seeing is in the radiated treatment zone, on the edge or outside. Typically most of the palm and lower third of the fingers is included to provide a margin where obvious disease is not detected; although of course the size of this field does depend on what the physical examination finds. See https://www.dupuytren-online.info/Forum_...50943427.html#2

Another consideration is whether you was treated at the appropriate time, whilst there were previous and current active symptoms of disease? RT is not a prophylactic and so does not prevent the possibility of new disease arising even within the irradiated field.

Some people take a while to respond to RT and some state that their symptoms increase after RT for a short while, pain, itching, redness, swelling, etc, although it usually settles within six months. I had ongoing symptoms for 18 months after RT on one hand before it settled but no new nodules. However I did have new nodules within the irradiated field after RT on on another occasion after I injured my hand; this also settled eventually but took several months.

I would ask your consulting doctor or radiologist for their opinion.

Best wishes SB

Edited 01/09/20 08:58

01/11/2020 21:35
harryzone 
01/11/2020 21:35
harryzone 
Re: New Activity AFTER Radiation Treatments

Thanks for the response SB. Much appreciated.

04/19/2020 00:10
mukasama 
04/19/2020 00:10
mukasama 
Re: New Activity AFTER Radiation Treatments

harryzone:
1) Has anyone experienced this same type of thing and what were the outcomes? If so, did you need or get further treatments?
2) Is this ABNORMAL for post radiation reaction within the first full year of treatment?

I thought I had this licked with the radiation treatments and now Im concerned that they didn't work for me. Would like any suggestions from other who may have gone through similar experiences.

Hi harryzone, I can commiserate on this one, but also offer a hopeful comment. I had DD develop quickly in both hands in Feb/March 2014. No family history, but I had had frozen shoulder on my left shoulder about 5 years earlier. I didn't like my US doctor's advice to "just wait till it get's bad and then have surgery." I found this forum and information on RT and began to educate myself. Throughout this time I had pain, tingling, and inflammation in both hands, both feet, and ulnar nerve entrapment that made it painful to type. In May and July/Aug 2014, I had RT on both hands by Dr. Herkstroeter in Frankfurt. The pain and tingling went away largely after the first series and completely after the second, but I developed a large soft and active nodule on the margin of the field on my left hand very shortly after the second series, and by the following spring had new nodule and tight cord on my right hand. Dr. H had insisted on only doing a very small field on both hands (1 cm out from visible nodules) and was very insistent about this. He said doing a larger area would not prevent DD from developing there and would limit the amount of future RT I could have since you should not give any area more than a total of 45 gy.

DD continued to develop in both hands, albeit very slowly, with the beginning of contracture on my left pinky and right index finger. Using our rowing machine and some yoga poses that stretch the tendons seemed to set things off too. Once I realized that I stopped those types of exercise. Intermittently the pain, aches and tingling returned, which I treated with ice and massage. I also went gluten free during this time, which seemed to help with inflammation, but didn't stop the slow development. I had three consultations with a local RO in Alaska who has done some RT for DD, but neither he nor I felt very confident in his retreating the area since he had never done this. During this time I was also diagnosed with Psoriasis - another autoimmune disease - but have only had two localized and not too severe outbreaks. I followed the dermatologist's advice to take evening primrose capsules and to avoid gluten - which I was already doing, but became more serious about it.

Back to DD. Finally in May 2018 (4 years after original RT), I flew to Essen and saw Prof. Seegenschmiedt and Dr. Yilmam. They retreated both hands using a much larger field and a small mask to cover the center of the previously treated field. I had the second series in August 2018. In the 18 months since then I have had no new development and almost total lack of pain, tingling and no new development in my hands. I don't know if the outcome after the first treatment would have been any different if I had gone to Prof. S from the beginning. He believes in using a larger field. Or Dr. H may be right that at that early stage it would not have helped (I do believe the nodule on the margin of the field on my left had would have been prevented or delayed.) In any case, I have been very happy with the results so far.

Onto LD. In 2019(?), I developed frozen shoulder on my right shoulder. Then last winter I tripped going down the stairs in socks and came down hard on the arch of my right foot. I was immediately concerned that the injury would trigger LD, which it did. It also seemed to set off an inflammation storm that activate my DD and ulnar entrapment, that I had not experienced since before the first round of RT in 2014. I went back to ice and massage and made an appointment with a podiatrist. Eventually the inflammation in my hands and feet subsided again, and the podiatrist gave me orthopedic insoles for my shoes to limit the amount of flexing in the foot during normal walking. He also prescribed verapamil cream 2x/day. The node on my right foot has remained small and does not seem active. I can't say whether the cream has helped or not, but after a few weeks of using it (applying it with my right hand in the morning and my left hand in the evening), I noticed recently that my hands have not felt this "normal" for as long as I've had DD.

I know that is more than you asked for, but this puts the retreatment in context of my whole journey with frozen shoulder, DD, LD and other autoimmune ailments. I continue to feel that being gluten free helps, and will continue to use ice and massage as needed if (when) the DD or LD become active again. I do not have any regrets. I have no real contracture and have gotten some flexibility back as cords and nodules have softened recently.

Attachment
LH retreatement field and mask 2018.jpg LH retreatement field and mask 2018.jpg (18x)

Mime-Type: image/jpeg, 755 kB

LH orig field and new node 6wks post 2nd RT series 2014.jpg LH orig field and new node 6wks post 2nd RT series 2014.jpg (10x)

Mime-Type: image/jpeg, 132 kB

RH retreatment field and mask 2018.jpg RH retreatment field and mask 2018.jpg (14x)

Mime-Type: image/jpeg, 770 kB

RH new DD 6wks post 2nd RT series 2014.jpg RH new DD 6wks post 2nd RT series 2014.jpg (11x)

Mime-Type: image/jpeg, 690 kB

07/19/2020 19:18
kevinp 
07/19/2020 19:18
kevinp 
Re: New Activity AFTER Radiation Treatments

Like you I had RT treatment in 2018 (July) in Milton Keynes and things did stabilise, no further nodule growth or contracture.

In the last months the nodules have grown, more swelling and no contracture is starting. There is a contact pain from this area of my hand (little finger).

I have contacted Genesiscare to see if repeat RT is possible/appropriate.

The contracture is a few degrees at the moment. I have perviously had surgery on my lefthand to correct a considerable contracture with positive results on my little finger.

How do you feel at repeat RT or do I need to wait for the contracture to develop? Maybe a stronger dose?

I appreciate any feedback over this.

Kevin

07/20/2020 07:26
spanishbuddha 

Administrator

07/20/2020 07:26
spanishbuddha 

Administrator

Re: New Activity AFTER Radiation Treatments

kevinp:
Like you I had RT treatment in 2018 (July) in Milton Keynes and things did stabilise, no further nodule growth or contracture.

In the last months the nodules have grown, more swelling and no contracture is starting. There is a contact pain from this area of my hand (little finger).

I have contacted Genesiscare to see if repeat RT is possible/appropriate.

The contracture is a few degrees at the moment. I have perviously had surgery on my lefthand to correct a considerable contracture with positive results on my little finger.

How do you feel at repeat RT or do I need to wait for the contracture to develop? Maybe a stronger dose?

I appreciate any feedback over this.

Kevin
This may be useful https://www.dupuytren-online.info/Forum_...48247359.html#6

07/22/2020 19:54
Prof.Seegenschmiedt 
07/22/2020 19:54
Prof.Seegenschmiedt 

SPECIAL MEDICAL VIDEO CONSULTATION to solve difficult questions ....

kevinp:
Like you I had RT treatment in 2018 (July) in Milton Keynes and things did stabilise, no further nodule growth or contracture.

In the last months the nodules have grown, more swelling and no contracture is starting. There is a contact pain from this area of my hand (little finger).

I have contacted Genesiscare to see if repeat RT is possible/appropriate.

The contracture is a few degrees at the moment. I have perviously had surgery on my lefthand to correct a considerable contracture with positive results on my little finger.

How do you feel at repeat RT or do I need to wait for the contracture to develop? Maybe a stronger dose?

I appreciate any feedback over this.

Kevin

Dear kevinp

Dear Jaykson2

Repeating RT is always a really challenging task and requires careful assessment an review of al RT data from the previous RT series (e.g. size of RT treatment portal, which energy level of electrons, type of fixation of your hand while being treated at the linear accelerator ...) I usually treat larger areas in the 1st and 2nd RT series while I am very cautious with the third and rarely forth RT series. Palpation and careful visual inspection is an important key to evaluate these options ...

Your situation of making an important decision and your need for appropriate counselling may be improved by receiving a SPECIAL MEDICAL VIDEO CONSULTATION which I have started to offer for all those patients being locked out from the different medical options due to the CORONA pandemia.

For example quite a few of my patients got stuck in just ONE RT SERIES missing the time gap for an appropriate application of the scheduled SECOND RT SERIES about 12 week after the 1st RT series. With VIDEO CONSULTATION we could at least visually inspect and examine the irradiated hands and discover possible changes

So I would like to offer you a VIDEO CONSULTATION which would require to sign an agreement form and send your personal disease data together with appropriate photographs to my E-mail account :

Prof. Dr. med. M. Heinrich Seegenschmiedt --> prof.seegenschmiedt@gmail.com

Edited 07/22/20 23:04

Attachment
AGREEMENT_SPECIAL_VIDEO_CONSULTATION_FORM - Abroad Patients_05-2020.pdf AGREEMENT_SPECIAL_VIDEO_CONSULTATION_FORM - Abroad Patients_05-2020.pdf (12x)

Mime-Type: application/pdf, 62 kB

DUPUYTREN-BASIC-FORM_2020_Page_1.jpg DUPUYTREN-BASIC-FORM_2020_Page_1.jpg (5x)

Mime-Type: image/jpeg, 157 kB

Dupuytren_Stadieneinteilung (nach Tubiana).jpg Dupuytren_Stadieneinteilung (nach Tubiana).jpg (3x)

Mime-Type: image/jpeg, 119 kB

Dupuytren_Follow-Up_Radiotherapy-Evaluation_Page-1_05-2020_MHS.jpg Dupuytren_Follow-Up_Radiotherapy-Evaluation_Page-1_05-2020_MHS.jpg (3x)

Mime-Type: image/jpeg, 95 kB

 1
 1
appropriate   considerable   experienced   dermatologist   Activity   Treatments   Radiation   Genesiscare   Intermittently   contracture   treatment   development   perviously   consideration   dupuytren-online   consultations   inflammation   nodules   CONSULTATION   Seegenschmiedt