| Increased Nodule size/ Pain AFTER radiotherapy? |
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07/05/2014 20:48
nanshands 
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07/05/2014 20:48
nanshands
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
prezzacc:
Hiya Nanshands,
Can i ask, why has the Prof said you are not eligble for the Radiotherapy? I went over for a day meeting and straight away was told i was eligible, i know he uses a 6 point scoring system i assume you dont quite meet what he needs to see yet?
Thanks
Wish I had an answer for you, but don't know myself. If I do get an answer I will let you know!
Nan
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07/06/2014 02:15
tasoh 
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07/06/2014 02:15
tasoh
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
JackT:
tasoh:
Hi Tamara,
I am new to this forum, and wonder if you can answer a question for me. I am seriously contemplating a trip to see Prof S within the next few months. I was diagnosed with DD in the left hand 1.5 years ago (progressing slowly), and just discovered a small nodule along the arch of my left foot. Since I'm a runner, this really has got me on track for RT! Did Prof S give you any instructions about limiting your walking or activity after the RT? I wasn't sure in his answer to me about activity after RT whether a person is restricted as a rule because it could make the RT less successful in some way OR whether one is limited depending on the amount of pain or reaction to the treatment which can vary from one person to the next.
I am anxious thinking about having my running curtailed for extended periods of time after treatment, and this will factor into the timing of my trips to Germany. From a practical standpoint related to work and other commitments, I would prefer to wait until August for my first treatment, but I'm not sure if that's too long. Tough decisions! Thanks so much for sharing your experience through this forum.
Tricia
Hi Tricia.
I'm a runner too in a similar scenario - although a bit further developed I think. Have you had RT? How did it go - I am considering it. Has anyone told you to stop running? So far the advice I seem to be getting is whilst I can then I should keep doing it but I do wonder if that is a contributory factor given the trauma it may cause?
Hi Jack,
I’m scheduled to see Prof S on August 4th. I have expressed my concerns about returning to running after treatment (he said he is an endurance athlete himself – marathoner, ultras, triathlete) and said that he has had marathoners return to distance running within 3-6 months after treatment. This, of course, seems like an eternity to me! When we communicated initially, he asked me about my event schedule for the year (which included a half ironman distance triathlon end of July and marathon in September). His comment was that I needed to consider this season vs. many seasons to come. I took that to mean that he didn’t think I should wait too long. So I’m leaving for Hamburg the week after my tri, and assuming I’ll have to skip fall racing. I am just hoping that he was giving me the worst case scenario and maybe it won’t be too long before I’m back to running. I guess it’s fortunate that I was talked into triathlon training last winter, so at least I’ll have swimming and biking to focus on until I’m back on my feet (literally)!
He did not give any restrictions or other recommendations about the running leading up to treatment, and didn’t really answer my question about activity after, so I haven’t changed anything. The foot nodule is probably a little larger than when I found it a few months ago, and only a rare fleeting pain (that I think might even be my imagination at this point). My hand is definitely progressing in terms of aching, tightness, but no contracture yet.
I will let you know how it goes and more specifics once I meet with him.
Tricia
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07/06/2014 02:23
tasoh
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07/06/2014 02:23
tasoh
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
nanshands:
Hi Tricia,
Hey, not to discourage you but if you just have noticed one small nodule in your foot you may likely not be ready for RT as yet. Consider that your trip to Germany may be more of an exam and discussion than treatment. I have been seen twice now for my LD by Prof. S. I have pain, typical symptoms that indicate treatment, and small, multiple, growing fibromas in both of my feet, but still have not received treatment. Learning to live with the pain and discomfort for about a year now. I have always been very active, I continue to keep up with my walking, but it's no picnic!
All to say, going to Germany for evaluation is helpful, gives Prof. S a good baseline, and helps you in understanding the disease better. But you may not be ready for RT. LD is evidently different with the timing for RT than DC, where earlier can be of greater importance.
Best to you,
Nan
Hi Nan!
I’m fairly certain he will treat my hand – I sent him photos, gave my history, etc. – and he seemed to think I would be a candidate for treatment. I sure hope he thinks treating the foot is appropriate at this time, but I’ll have to leave that up to his expertise. The foot is the big scare for me though because of running. Did Prof S have any recommendations for you regarding activity, shoes, etc.? I’ve read elsewhere in the forum that he’s an advocate of minimalist footwear, the knobby balls for massage, etc. I’ll report my experience in August – due to see him in about a month!
Thanks,
Tricia
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07/06/2014 02:50
nanshands
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07/06/2014 02:50
nanshands
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
Hi Tricia,
Yes, I imagine he will treat your left hand. My right hand was treated, the right hand being the more active one, though I have DC in both.
But, again feet seem to be a different story. Unless you have a large fibroma.
Regarding shoes: I was told tennis shoes or walking on sandy beaches. No sandy beaches where I live, so tennis shoes or going barefoot feels the best for me.
Best wishes to you,
Nan
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07/06/2014 10:51
Gloria 
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07/06/2014 10:51
Gloria
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
Hi Tricia,
I will also be seeing Prof S the week of August 4th. This is my first visit. I have fibromas in both feet and I believe Dupuytrens in both hands - although no official diagnosis on this. My hope is that I will be ready for treatment on everything. It's encouraging to read that the Prof said he has had marathon runners return to their schedule in 3-6 months. I'm not much of a runner but I've walked a few half marathons and I enjoy playing tennis. I've had to stop the tennis in the last couple of months. The discomfort for the several days after just wasn't worth it. I was also afraid I could be causing more harm. Maybe I can return to both next year. My husband and I will be traveling from Atlanta and I'm scheduled for 2:00 Monday afternoon. So ready to be proactive with this!
Gloria
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07/10/2014 21:25
tasoh
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07/10/2014 21:25
tasoh
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
Gloria,
I am scheduled with Prof S at 1:00 that afternoon! We should meet up and compare notes. A good friend is traveling with me - we're booked at the Marriott in town and plan to take the bus/train? out to the clinic each day. Then hopefully do a lot of biking and sightseeing in the area.
Safe travels!
Tricia
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07/11/2014 09:58
Gloria
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07/11/2014 09:58
Gloria
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Re: Increased Nodule size/ Pain AFTER radiotherapy?
Tricia,
We are staying at the Marriott Courtyard near the clinic. I'll send you a pm.
Safe travels to you as well!
Gloria
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