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4 days after radiation My hands hurt
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09/17/2013 19:31
Jolene 
09/17/2013 19:31
Jolene 
4 days after radiation My hands hurt

Its been four days since 1st round of RT on both hands. My hands hurt. The swelling in my hands that I had before RT has gone down.The tingle hot pain sensation is stronger than ever before. Now that the swelling has gone down I can see where the cords & noduls are. I see them running all the way up to the tip of my fingers. The web between my thumb and finger is really effected with DC.

I am so freaked out that RT will not work.

Could it have made it worse?
Is this part of the process on the hands?
What if the oncologist did not have the electron beam go deep enough?
What if he left some of the diseased area out?
What if it does not work? what then?

My hands are painful. I know most of you do not experience pain in your hands.
My experience, From the get go of noticing DC I have had the crawling tingle sensation.

Edited 09/17/13 22:35

09/17/2013 19:58
spanishbuddha 

Administrator

09/17/2013 19:58
spanishbuddha 

Administrator

Re: 4 days after radiation My hands hurt

I had series 1 RT 3 weeks ago. I noticed in the first week afterwards some extra soreness. Now it seems a lot better, less sore than before the treatment.

This is my second hand to have RT. I had RT on the other hand two+ years ago. I was a bit disappointed with the outcome, but maybe my expectation was too high. I have had no reduction in the sizes of nodules or cords, and for 18 months or so it remained pre-treatment sore, now I have to say it seems quite stable. There are continuing changes that suggest the disease is active in new areas, but overall it's better and no contracture. Even so I consider that the jury is still out.

There are no guarantees, but you should I think feel positive that you have done something that has shown to be mostly successful. But be patient. Don't expect a reversal. Get on with your life, with a slight plan in the back of your mind for taking another step if it progresses to the next stage which is a contracture of sorts. I continue to play piano, ride bike, play tennis, do gardening and some modest DIY, all of which involve my hands, but I take precautions.

09/17/2013 21:33
Jolene 
09/17/2013 21:33
Jolene 
Re: 4 days after radiation My hands hurt

Hello,

May I ask you a few questions;
Regarding both of your hands, How much of your hand did you have radiation on?
Who is your oncologist?

My hands hurt so much that I wear gloves to drive. The right hand really hurts to try to straighten it out. I did not have this problem before RT

What's wrong with me?

09/18/2013 06:32
spanishbuddha 

Administrator

09/18/2013 06:32
spanishbuddha 

Administrator

Re: 4 days after radiation My hands hurt

I went to ProfS in Germany as I live in the UK.

I wear gloves to drive. Before, my right hand (being treated now) would hurt from the steering wheel.

After examining my hand ProfS decided to radiate the palm, including the thumb web, and fingers just up to the PIP joints.

Last time the field radiated on the other hand was similar, but excluded the thumb web. It all depends on the examination, but then some margin is added for presence of disease that is not directly detected.

09/18/2013 11:16
Jolene 
09/18/2013 11:16
Jolene 
Re: 4 days after radiation My hands hurt

Hello,

Thank you for the response.

My doctor radiated both hands: the entire palm starting at the wrist and went up all fingers just right past the PIP joints along with the web of the thumb and most of the thumb with the exception of the tip of the thumbs.

QUESTION:
Did you keep your fingers and thumbs together or did you have them spread apart during radiation treatment?

09/18/2013 14:36
cschieber 
09/18/2013 14:36
cschieber 
Re: 4 days after radiation My hands hurt

Hi Jolene. My hands were very sore after radiation. It took about two weeks for them to calm down. Afterwards, the nodules did shrink and flatten but overall the disease continues to progress with a new nodule right in the middle of the RT field.

09/18/2013 15:09
Jolene 
09/18/2013 15:09
Jolene 
Re: 4 days after radiation My hands hurt

Hello Cschieber,

What oncologist did the radiation?
What city, state?
also how long ago did you have radiation?
And have you had both rounds?

09/19/2013 17:24
Fredsabato 
09/19/2013 17:24
Fredsabato 
Re: 4 days after radiation My hands hurt

Dupuytren's varies from person to person. I had two rounds of RT for my right hand about 4 months ago, the first one didn't seem to stop it, so Dr. T in La Jolla had me go thru another round of RT, afterwards my hand hurt and was very dry, I fear it damaged the nerves, but the RT did seem to slow or stop the progression.

Now 4 months later the pain is subsiding, and the nodule and cord have remained the same, or very slightly better.

The wierd thing is that some days there is no pain, and the cord seems to be going away, but then all of a sudden my right hand, and bottom of my feet hurt. It kinda goes in cycles.

I also have slight Peyronies, women do not have to worry about that

All of these conditions are related, the gene turned on, there is no way to stop it, just mitigate it. Basically this is a fibrosis of skin to body connective tissue.

I also had frozen shoulder, but it went away.

This condition is a bummer, it really depressed me at first, but now I have learned to live with it and to move on.

Dr. T said the success rate is about 75%.

Edited 09/19/13 20:28

09/19/2013 19:28
Jolene 
09/19/2013 19:28
Jolene 
Re: 4 days after radiation My hands hurt

Thank you to everyone who provided me some insight. I had put such high hopes in radiation. It seemed like everything I read was all positive. First it seemed that every person who went to Germany, who was treated by Prof S. had the best results. Why would he have any better results than the oncologist in the USA? What is it that he does so much different? Radiation is radiation.

I just want this nightmere to end.

09/19/2013 20:54
Fredsabato 
09/19/2013 20:54
Fredsabato 
Re: 4 days after radiation My hands hurt

Jolene,

It is good to communicate with others, you are not alone. Everyone has problems, my cousin died a few years ago at 48, heart attack, left two kids and a wife behind. Another cousin's 9 year old little girl died of cancer a while back. These are sad stories, not to compare, but to contrast, things happen, you will be fine, this condition is not fatal, I have never heard of anyone being completely debilitated from this, maybe we should be thankful this is all that has happened to us up to this point.

I work with a 68 year old male that has had the condition since his late 30's, he had successful surgery 6 years ago. How he lived with bent fingers I'll never know, he is just one of those people that lives with stuff. He never had RT, he didn't know about it. He has and has had all the issues discussed on this forum, and he has lived a great life. You will also note that the condition tends to have active phases, then calm down for years. Most likely yours is in an active stage and will die down over time. There are all kinds of treatments, RT, oral medications, NA, surgery, Xiaflex.

I too was very upset, maybe deprssed, when I realized I have this. But I went to some good doctors that pointed out that 99% of people with this condition live a full and happy life, especially my regular doctor who worked at a VA hospital, mostly older people, and he said he dealt with a number of people that had Dupuytren's, bent fingers, and never knew what it was.

By the way, I too am disappointed with RT, I really hoped that it would just get rid of this, but instead hurt my hand, and seemed to make the condition more active or "angry" as some put it, especially right after, but Dr. T told me it takes like a year to determine success, he told me to come back in 1 year, sooner than that is too soon to tell.

Good Luck
Fred

Edited 09/19/13 23:55

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