Yes, RT is only effective on proliferating myofibroblasts. There are usually active signs that this is occurring, such as pain, tingles, aches, soreness, tenderness, pulling, redness, skin changes (pitting, pulling), blanching, other physical changes such as new nodules, growing nodules, growing cords. It is best determined by a consultation and examination with an experienced doctor. But you can help my keeping a regular weekly or monthly record, with photo's, of symptoms, so that prpgressive signs of 'activity' are objective and not subjective.

For first time people new to the disease this is usually accompanied by asking about other indicating factors, genetic, diabetes, alcohol, vascular or fibrotic conditions, knuckle pads, frozen shoulder, and so on.

You are wise not to have RT just because you can, or have evidence of the condition, as RT timing is critical for its success as a treatment. I am a bit surprised your doctor has not advised you of this, he sounds inexperienced in the treatment of RT or LD?

Jolene

I had the same thing this year. Active symptoms, and round 1 of RT in summer with ProfS. After about 4-6 weeks the symptoms had gone, although no reduction in size of nodules or cords.

I was so pleased with the result of round 1, I asked ProfS, well do I really need to bother with round 2 at this stage?

He told me I could leave it, but in his prior experience 95% of people who do not have round 2, have symptoms re-activate within 2-3 years, whereas 80% people who continue with round 2 have no further symptoms at five years.

That's the best info we have to make the decision on.

The hypothesis is that round 2 catches those few and reduced stubborn cells that have sufficient ability to be active sufficient to continue with progression.

Edit to add: as per my earlier post, one symptom, just pain for example, is not enough to indicate the timing is right. It takes a number of symptoms, and a more holistic overview. In the end we as patients are contributing to the treatment basis, as the bottom line remains we don't know what causes or controls the disease (despite all the micro-cellular biology and genetics that is understood about it.)

Edited 12/10/13 16:32

Hello Tamara, Jolene, and S.B,

I think the three of you have all figured out that I am the gal that just returned from Germany and treatment with Prof. S that Jolene referenced. My husband and I had a horrible time getting back, several plane cancelations, extra night in Chicago, put on Stand-By, etc. all to say I am exhausted! Spent yesterday just resting, BUT after I unpack and take care of a few things I am anxious to share the input I received and my experience.

Regarding symptoms, however, for now. I have a lot of pain with this disease, EVERY symptom that S.B. mentioned. My greatest hope in doing RT was to receive relief from the pain and stop progression. I did expect, based upon my symptoms, that I would be getting all 4 extremities treated. Though symptoms clearly indicate activity it is NOT the greatest or primary determining factor in when a person should receive RT. That is based upon what S.B. stated, "Yes, RT is only effective on proliferating myofibroblasts."

Before going to Germany I had met with two other oncologist in the States, no one explained to me what I learned in Germany about this disease, and most importantly the "prime time" to treat for greatest possible outcome. That does NOT just mean relief of pain, but the less likely chance of reoccurrence, nodules/cords, and avoidance of eventual contracture. My pain, associated mostly with disease activity, will eventually go dormant or the disease will progress in all my extremities, as it has in my right hand where then RT can be done.

It is not easy, by any means to sit here and know that my right hand already "feels" better than my left hand. My left hand has only one cord and one nodule, my right hand has 7 nodules and several cords. Or, in my case deal with the pain in my feet, though I only have a very small nodule on one foot at this point. But in my mind, it would be far worse to treat prematurely now knowing the downside of what they could mean in the future.

The aspect of not everyone can go to Prof. S or to someone else well qualified and experienced with this disease is one of the biggest problems of helping others in the active, early stages of this disease when the greatest hope of stopping progression can be achieved through RT.

I have several thoughts about that, certainly this Forum is a great way of helping one another to become self-educated with this disease. This is a disease that requires the patient to be their own doctor. There is little information, and too often misinformation.

I hope I can post more soon. As Prof. S has stated in his UTube 2010 Symposium presentation, "This is a slow progressing disease, and must be treated slowly." He stressed that again to me in person. I have posted before the danger of letting pain be our decision maker. I am learning what it means to endure this disease, but with much greater hope now!

Nan

It looks like I posted at same time as Nan. Thank you for the update, but I am even more concerned now that I am doing the right thing. Would anyone like to weigh in on if I should go for my second treatment today???

Confused and anxious in San Diego,
Tamara

My next question would be; perhaps I could still go to Germany for the next round on the one foot and a consultation on the other, or would you not switch at this point? Where in Germany is Prof S at, does one pay this all at the time of treatment, how much, (I'm assuming no insurance covers Europe), is the language a barrier, and is it difficult to handle on your own?

Tamara

Hi Tamara,

On the Personal Experience page under the Patients tab of this website, there are some really detailed reports of going to Dr. S for treatment, including travel information and photos, you might find helpful. It looks like a very manageable process to do on your own, and language doesn't seem to be an issue at all. My insurance would have covered the treatment at 70% but not travel or lodging. The treatment costs are very small compared to in the US. The costs are detailed somewhere on the forum, I know I saw them at one time. You might email Dr. S now to see what he says about your situation.

Barbara