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Nodule question
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05/05/2010 00:48
David26

not registered

05/05/2010 00:48
David26

not registered

Nodule question

When you get RT, is the treatment just for the nodule and a small margin around it? I see some posts referring to treatment of the whole palm and sometimes up a part of the finger(s).

One reason I ask is I have two large tender nodules below each pinkie. Then on the left hand, it feels like 2-3 small nodules below the ring finger. I didn't know more than one per finger could happen.

I've also been having a burning and other strange sensations in the whole palm area and up the finger joints. Likewise the soles of my feet most always have the same sensation. This has been going on for one month. I have some contracture already of the right pinkie and down that cord into the palm. The part of the cord in the finger is thick and tight. No other contracture noticeable so far.

Seems like a sudden and aggressive onset which is why I am going the RT route in the next few weeks. Still trying to make a selection and get the insurance approval done.

But I wonder why some docs are treating the "whole palm". Is this only when the whole palm is affected with nodules or because of other symptoms complained of.

Edited 05/05/10 03:51

05/05/2010 03:32
LubaM. 
05/05/2010 03:32
LubaM. 
Re: Nodule question

Don't know about others, but in my case...

On the left hand the Dr. treated with RT the whole palm. The area treated was sort of kidney shape including the whole palm, extending into the bottom of the fingers (except thumb), and including the first joint of the index finger. I had multiple nodules in the middle area of the palm, I also had nodules at the bottom of the index finger, and the ring finger, in addition I had a small cord running from the bottom of my index finger all the way to the middle joint of that finger....hope you can visualize all this....

He also treated at the same time the bottom of my left foot where I had two large, hard nodules.

Burning and itching is definitely a sign of active disease and according to Dr. Tripuraneni at Scripps, LaJolla an ideal time for RT to be effective.

In my case....the two nodules on my foot, are almost gone (whats left of them is flat and soft, they were like hard marbles before).
The nodules in my hand are much softer, the very small cord I had on my index finger is gone and I can now open up my hand much more. The itching and burning is gone... so far....great results.

I am now watching my right hand for any sign of disease, I wouldn't hesitate to do RT again if needed.

Edited 05/05/10 06:38

05/05/2010 12:47
David26

not registered

05/05/2010 12:47
David26

not registered

Re: Nodule question

another follow up question:

what is the difference in 7 days at 3Gy versus 10 days at 2Gy
is there an advantage to the 10 day treatment?

These different protocols are confusing. I assume the doctors do different things for different patients but if it essentially the same result, the shorter timeframe works better for people like me who have to travel for treatment.

05/05/2010 13:47
cindy850 
05/05/2010 13:47
cindy850 
Re: Nodule question

I had nodules below each finger and cords below each finger. Had cords below thumbs but no nodules. My hands are a lot better since i did rt and i feel like i made right decision. Reading on here helped me out a lot. If you think you are getting contractions already you really need to decide on rt because they want no contraction if you do treatments. And as for the 2gy and the 3gy it gives you a chance to redo treatments if need to at a later date but much later if you do 2gy. I did both hands in 10 days and i thought that was great because the treatments only take about 3 minutes per hand. Very quick so i was pleased. Did you finally get to look at my pictures yesterday because they fixed the problem and now you can see them. Take care

Edited 05/05/10 16:48

05/05/2010 14:12
David26

not registered

05/05/2010 14:12
David26

not registered

Re: Nodule question

yes I did, thanks

maybe Wolfgang or newman can chime in on the Gy question above
they are both about 20Gy, just over different time periods
I wonder if the longer 10 day period is better/safer, etc.?

Edited 05/05/10 17:12

05/05/2010 14:38
wach 

Administrator

05/05/2010 14:38
wach 

Administrator

Re: Nodule question

David, I believe there is little to no difference between 7x3 or 10x2 Gy. It's more a question of habit at the specific clinic.

As a total of 30 Gy should not be exceeded in any specific area it might be actually interesting to just do 5x3 = 15 Gy thus keeping the possibility of another treatment should need arise later. But that's just my privvate opinion, clinics usually use 20 - 30 Gy.

Wolfgang

David26:
another follow up question:

what is the difference in 7 days at 3Gy versus 10 days at 2Gy
is there an advantage to the 10 day treatment?

These different protocols are confusing. I assume the doctors do different things for different patients but if it essentially the same result, the shorter timeframe works better for people like me who have to travel for treatment.

05/05/2010 16:03
lori 
05/05/2010 16:03
lori 
Re: Nodule question

David,

I had burning, a tingling crawling feeling, great pain from my hand all the way up into my shoulder. It keep me up at night and my hand felt cold a great deal of the time. As to the treatment area if you look at the sidebar under RT that is my hand showing how it is done in the US. It shows the mapping area and what the maching looks like. The treatment area was about 1/2 inch around and from the cord on all sides. If you look under "from MRI to now" you can see pictures of my hand before RT, after 3 months and after 6 months.

I had 5 days at 3gy, then back again in 6 weeks for 5 days at 3 gy.

Will you be coming to Charlotte for treatment? If so have you discused with Dr. C. having it done in a 10 day period at a lower dose or did he say to do it like mine?. I emailed him yesterday with that exact same question as to the different dosages and time frames used and wanted his opinion. He said we would discuss it at my appointment June 3rd. I want to know in case I get a new nodule.


Lori

Edited 05/05/10 19:12

05/05/2010 18:06
David26

not registered

05/05/2010 18:06
David26

not registered

Re: Nodule question

Lori, thanks. Many of the posts refer to a metal shield with a cutout. I seem to recall they were Scripps patients. I wonder why the difference if they are all using e-beam.

Dr. C was very helpful and referred me to a UAB RT doc and I will see them Tuesday for a consult. I am unsure if I want them doing the RT if they have no experience with DC. I want the best since I feel like I have a super dose of this stuff. Dr. C didn't want me to have to travel if I could have it done locally. However, I thought I understood him to say he only did like one DC patient every two months or so.

But the local consult should help me solve the insurance approval part right away. I do want to get a 20Gy dose if I can. Still trying to decide where to get the RT. Will probably make that decision next week.

I'm interested in whether he will do the lower dose.

Edited 05/05/10 21:12

05/05/2010 18:59
flojo 
05/05/2010 18:59
flojo 
Re: Nodule question

No expert, but, for what it's worth, here is my thinking:

I think any radiologist would know how to do RT for DC, especially if they do radiation for non-cancerous conditions. Radiologists have to personalize radiation for cancer for each person and what particular kind of cancer it is anyway, so RT for DC wouldn't be more critical than that. If I ever need it again, I may consider trying to find someone nearby even if they have not done RT for DC just so I won't have to travel. I'll do research and interviewing of the radiologists to feel comfortable that they know what they are doing. For NA, I want someone with experience.

The lower dosage over a longer period of time may cause less burning, drying and skin peeling. I had almost no peeling - only a little flaking on the edges of my palm where the skin/tissue is thinner. The flaking showed up about 2 weeks after RT and was all gone in about a week. I could never tell any difference in dryness between the radiated and non-radiated palm. I had no sign of burning except the flaking. I can have RT done again in the same area if it becomes necessary, but so far, no need.

05/05/2010 19:51
lori 
05/05/2010 19:51
lori 
Re: Nodule question

David,

The shield that covered the non radiated area looked like a square with an oval cut out. If you look at my picture the oval cut out was where the little dotted lines were. The material looked like a gray pumice stone. I know they melt it down and reuse it.
I believe that is true that Dr. C. only sees a DD patient every couple of months. Charlotte doctors appear to refer to surgeons who say to wait till you have signficant contracture before surgery. The two surgeons I saw said that surgery was the only treatment. I know how you feel about wanting "the best" or at least someone who knows what you are talking about. The fact that he knew how to treat it was reassuring.

Having gone through it I feel more relaxed if I have to go through it again. Dr. C. mapped it and ordered the shield and made sure it was where he wanted it. He approved the placement and the area to be radiated, but it was the technicians who I saw every day for actual treatment. Dr. C. stopped in on the 3rd day and of the 5th. I saw different doctors the second time around because he was not at that office that week. Even though low dose RT was a huge thing in my mind for my treatment, I felt like I was a breath of fresh air for the doctors and technicians. They enjoyed treating me because it was a minor form of treatment with a positive outcome. They were all fascinated by my hand, most had never heard or seen DD before.

My suggestion if to take copies of the research articles on the dosages with you to your visit so that if the doctor is not as familiar with DD as you want you will be able to show them the treatment protocol. They should be able to treat you from that. I know that probably does not give you a "warm and fuzzy" feeling, but it will support your request with fact based nformation.

I agree with Flora, any Radiation/ocologist doctor can treat this, DD is easy compared to what they normally do.

Lori

Edited 05/05/10 22:58

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