I had RT at Scripps for LD in both feet, round 1 in July, round 2 in September. I had been doing so well, I felt like my old self pre-LD, but then the past couple of weeks have not been great.
About three weeks ago (which was 3 weeks after round 2) I realized my feet had the RT burn I've read about. Dry, a little sore and tender, slightly discolored and with a papery quality. It lasted about two weeks and was distinctly in the circle area that was treated. Not a big deal, I used a little cortisone cream and lotion, but it was a reminder that radiation does damage.
The nodules are definitely much smaller, flatter and softer. But I had a few really long, active days, sightseeing with friends visiting, and I ended up with actual pain again in my right foot, right at the point where the nodule and cord meet. It kept me up at night, partly from the pain and partly from the distress at realizing this isn't over the way I thought it was. It's been about a week since then, I have been really taking it easy, more careful about what shoes I'm wearing, feet up when I get home, etc., but I have had some painful moments and a fair amount of discomfort. Really not horrible - if you told me it would never get worse than this, I would say fine, I can definitely live with this okay -- it's more the worry, is it going to get worse? I know improvement can continue for many months after RT, so that is what I'm hoping for. Definitely feeling a little discouraged though.
LubaM.:Spica, Welcome to the forum and good luck with your LD treatment at Scripps. Just wanted you to know that you are in good hands with Dr. T. at Scripps. I had RT for my left hand DD and left foot LD with Dr. T at Scripps in November 2009. For my hand it was partially successful in that it stopped the progression of the disease for three years in the palm of the hand, but eventually I started to have a problem with my pinkie contracting and needing NA treatment, which I did recently.
My RT for the left foot was totally successful at stopping the progression of the LD. I had two hard, marble size nodules on the bottom of the left foot, it was constant itching and burning and the nodules were getting larger. In Nov 09 I had RT with Dr. T, same dosage as you are getting, but he did two consecutive weeks, Mon to Fri. In 2009 Dr. T was just beginning to treat patients for DD and LD, he surely has much more experience in that field, and seems to follow German protocol of waiting between first and second series of treatment.
We also live 2 hrs. away and we opted to stay in a great, inexpensive hotel near Scripps because we didn't want to deal with traffic, let me know if you need that information. It has been over three and a half years, and the nodules on my foot are more than 90% gone. What remains I can barely feel. I still only wear comfortable shoes most of the time (sneakers in winter and very good ECCO sandals with lots of arch support in summer) and only wear "dressy nice" shoes for special occasions. I have "bad" feet with bunions and plantar fasciitis (in remission), so I don't want to take any chances.
It's great that your insurance is covering this. There was an "issue" at Scripps with Medicare covering RT, so that's a problem for us "seniors".
Let me know if you need more information
Wondering when you had RT back in 2009 how large was the field area Dr. T targeted?
I am sorry to hear your feet are feeling worse again. I would think though that since the nodules are smaller, that would be positive sign for the future. It is the continuous growth to large lumps, unwalkable on, that scares me so.
I am scheduled for RT with Dr T in a couple weeks, but I am very nervous. He said my LD was Already medium sized and he would do both feet and my one hand with rapidly progressing Duyputrens. I am trying to think now of all the things I should have asked. If anyone can explain more about how he decides the area to radiate, I would appreciate any info. It sounds like it is much larger than jus the lumps. Also, is it always the same amount of radiation, and how does this amount compare with radiation for cancer therapy? I guess I am concerned with the amount received and what it can do to your skin and body long term, and am not sure I am finding enough good info to make a well informed choice.
Also, Dr T said if your LD wasn't active, it wasn't worth doing the RT. how does one know if things are active? Any help would be appreciated. Nervous, but hopeful,
Hi Tamara, I replied to your private message but wanted to reply here too. My nodules seem to be shrinking more and I haven't had any pain or really even discomfort the past few weeks, after that one brief period when I seemed to have regressed. I can still feel that "something" is in my feet, not only the nodules but also the area around, but it's not painful and I'm not constantly aware of it. I can go days at a time without even thinking about my feet. I briefly had dry skin in the circular area where I had the RT but it went away quickly and wasn't very bad at all. Dr. T. determined that my nodules were active because there had been recent growth, though they were still pretty small. Overall I am very glad that I did the treatment and can't see any down side at this point. I'll have to see how things progress but I am hopeful. If you go ahead with your treatment next week, I wish you the best and feel free to private message with any questions - that way I get an email alert. Otherwise I don't think to check the forum all that often these days. S
To answer your other questions, the area Dr. T radiated for me was about 2.5 to 3 inches in diameter with the nodules in the center of the circle. It is my understanding that RT for cancer is generally 60-80 gys over 6-8 weeks, compared to the LD RT of 30 gys over 2 weeks, with two months in between the 2 treatment weeks.