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How soon until I will see RT effects
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08/25/2013 19:10
DaYooper 
08/25/2013 19:10
DaYooper 
Re: How soon until I will see RT effects

I was diagnosed with stage N in one hand in May. I got 5 days (rations) of radiotherapy in June. Within a couple weeks I noticed it was no longer painful to squeeze my kitchen sponge which I consciously avoided up to then. The two nodules also appeared to have softened somewhat. After waiting 6 weeks I got 5 more days of of RT which I just completed a couple days ago. There we no noticeable side effects to the RT. I'm glad I had the RT at the earliest stage and hope it will stop the long term progression.

08/26/2013 22:18
Jolene 
08/26/2013 22:18
Jolene 
Re: How soon until I will see RT effects

Dear DaYooper,
where did you have your RT at?

08/26/2013 22:47
DaYooper 
08/26/2013 22:47
DaYooper 
Re: How soon until I will see RT effects

I set up an appointment with Dr. Kathryn Dusenbery at the University of Minnesota in St. Paul. She contacted my local hospital and I was very lucky that radiologist oncologist, Dr. Gregory Cooley, was interested in learning about treating Dupuytren. However Dr. Cooley has now moved on to University of Wisconsin Madison. So you would need to visit with one of these two doctors and either have the RT with them or ask if they could find a hospital closer to your home that is willing to handle the treatments. As Dr. Dusenbery told me there is no special training needed for treating DC - it's just targeting the beam at the hand rather than somewhere else.

08/27/2013 19:14
dottyhand 
08/27/2013 19:14
dottyhand 
Re: How soon until I will see RT effects

Hi I haven't been on here for a while, I had RT done last Jan / April, in my left hand. I had 3 good size nodules in my palm and slight contracture with my middle , ring finger.
I feel the results are not brilliant, my nodules have flattened, my middle finger has stayed the same, my ring finger is continuing to curl in. I also have the fatty bits on inner side of the fingers, so I can no longer wear my rings.
I have no regret in trying RT , a little improvement is better than none .
Everyone is going to react to treatment in different ways, I wish you luck and fingers crossed ! Well kind of crossed x

08/28/2013 04:22
pia2some 
08/28/2013 04:22
pia2some 
Re: How soon until I will see RT effects

This has probably been asked and answered already ... does insurance not cover RT? I am assuming it does not. If not, what kind of costs does it run to treat one hand? I guess it depends on the amount of area treated?

My hands are too advanced for RT, but I am still curious about the cost.

~ dawn

08/28/2013 11:52
dottyhand 
08/28/2013 11:52
dottyhand 
Re: How soon until I will see RT effects

I didn't have any kind of health insurance , so it cost me £1700.00 plus hotel costs ! This was done in Guilford .

08/28/2013 11:53
Jolene 
08/28/2013 11:53
Jolene 
Re: How soon until I will see RT effects

Hi Dawn,

My insurance covered all the cost of RT for the foot. I had to pay my deductible which is $1000.00 My insurance is Alliant. Another person I know has BC/BS. Not sure how much BC/BS covers but it did cover most of it.
To my understanding its all in how the doctor office codes the treatment.
Hope this helps

08/28/2013 16:38
joshlin9693 
08/28/2013 16:38
joshlin9693 
Re: How soon until I will see RT effects

Ok, I had the RT 8/5-8/9. I never did notice any redness or dryness. Dr. said to use lotion and also take vitamin E daily (500ui) The cord feels a bit less defined and smooth and the nodule feels smaller and more dense (maybe.) I think I am feeling less pulling and I am not feeling any of the itchy, crawly feeling that I was getting before the RT as well as a week or so after. This week it does seem to feel less tender to pressure. I have another appointment in a week or so and I guess we will set up the second round. Hope they're radiating correctly! The Dr. said he has done it before, but, you just don't know...Would love to go to the expert, Dr. S., in Germany, but can't afford it.

My insurance, Aetna, does cover this, thankfully. I have yet to see a bill for the RT, though, so I have no idea how much it costs! So far, I have only seen an EOB for the initial consult.

For those of you that are looking into this. A good place to look for Docs is to call a teaching/research hospital, which is what I did. I called UTMB in Galveston, TX. They gave me the name of a radiation oncologist who has treated people with this disease. I contacted Dr. Dusenberry at U of Minnesota and her office sent me info. as well as gave me that idea to call. I was originally going to go to her since she's on the list of docs who do this (I'm originally from MN & have family there) but that was going to cost me money and time for the travel. Anyway, they were very nice and sent me an information packet.

I am sure hoping that this all works. I, of course, want the nodule and cord to just be gone, but I know that this could be as good as it gets or it can get worse...I did cancel the appointment with a hand specialist. Fortunately, she was on vacation when I first learned of this and couldn't get in until this week. I found out from a friend that the doc I was referred to was booted from a former practice for doing unnecessary surgeries (she had done one on my friend for another issue!) So glad for forums like this so we can figure out other alternatives to the standard wait & then get surgery. That doc did send me info on the disease as well as xiaflex.

Will keep you updated. Best wishes to everyone out there.

08/28/2013 16:49
Lanod 
08/28/2013 16:49
Lanod 
Re: How soon until I will see RT effects

dottyhand:

I feel the results are not brilliant, my nodules have flattened, my middle finger has stayed the same, my ring finger is continuing to curl in. I also have the fatty bits on inner side of the fingers, so I can no longer wear my rings.

Hi. Thank you for this input. Did the RT field include your fingers (middle and ring up to some point) or did they just threat your palm?

08/28/2013 19:51
joshlin9693 
08/28/2013 19:51
joshlin9693 
Re: How soon until I will see RT effects

just my palm. I have a nodule about an inch below my middle finger and the cord goes down from there into the center of my palm. My finger was not bent, I just felt kind of a pull when I tried to straighten out my finger. Seems like there might be less of a pulling feeling now.

Edited 08/28/13 22:53

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