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First round of RT and already seeing results
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01/10/2014 19:03
Tami 
01/10/2014 19:03
Tami 
First round of RT and already seeing results

I thought I'd share my story in the hopes that it might prove helpful to those who are in the treatment decision making process. I was very afraid to have RT and decided to take a wait and see approach after I was diagnosed with DD.

Some basic facts about me. I'm a 48 year old female with no history of hand trauma, minimal alcohol intake (sometimes months without drinking with my 'high' consumption being 3-4 glasses of wine in a week. I do have a 75 yr old mother with DD (nodes/cords but no contractures) who didn't realize she had DD until I told her about my diagnosis.

Approximately 16 months ago I notice that I had 3 small sensitive nodes in my left hand. I also had tingling and the occassional shocking sensations. Ultimately a hand surgeon diagnosed me with DD and told me that he coud do nothing until I showed significant contracture. Of course I knew about RT as I'd found this site (yea) so I asked the him about RT as a treatment option. He responded that he'd never heard of RT being used to treat DD. It still amazes me when I hear doctors that specialize in a field less aware than their patients are of potential treatment options.

Again because of this site and Lori's willingness to share about her treatment with Dr. Crimaldi in Charlotte, NC, I decided to shedule an appointment with Dr. C in January of last year. I met Dr. C and he and his staff couldn't have been nicer. Initially I thought I was going to do the RT and then I got scared and cancelled my appointment. Dr. C's nurse called me back just to ask if there was anything that I needed answered as she had noticed that I cancelled and did not reschedule. To say that I was surprised that they cared enough to call was an understatement (some people are truly meant to be in the field of healing others), but I'd decided to wait and see if my DD progressed.

About 2 months ago my DD kicked into gear and got significantly worse in my left hand. I developed another node and thick cords in my 2nd, 4th and 5th fingers up to my PIPs. I had a 10% contracture in my 4th finger and approximately a 15% contracture and small knuckle pad on my 5th finger. My right hand had also started tingling/shocking and I had 3 very small nodes that you could feel upon palpatation and that hurt with medium pressure (gripping a steering wheel). I was really stunned at how quickly my left hand deteriorated in about a 4 weeks and unhappy that my right hand was now affected.

That sent me back to Dr. Crimaldi. Dr. C once again went over the treatment information with me, including the increased risk of developing cancer which he indicated was a 0.1%. Maybe it was because my contractures put me right on the cusps for those who get good results with RT or maybe Dr. C does this for all of his patients, but he got me in the next day to mark my hands and have the shields developed so I could start my RT the following week. The Levine Cancer Center where I was treated is extremely busy and I thought I'd have to wait weeks to get in. Although he certainly didn't promise anything, Dr. C was optimistic that the RT could stop the progression in the left hand and that I might experience regression in the right.

Well I just finished my first round of RT treatment of 20gy for 5 days and I already have noticable improvement. In my left hand all of my nodes have softened and I don't have the same feeling of tightness I previously had. I can definitely spread my hand out wider although I didn't previously measure this. The cords aren't noticably softer when I palpate them nor have the contractures changed. In my right hand the tingling/shocking has stopped completely and I have to push really hard to find the nodes or get any sense of discomfort.

After the RT my hands were more sensitive to pressure but I've had no other issues. Dr. Crimaldi also encouraged me to massage and stretch my hands. He said that although he didn't have a clinical study to prove this helped, his patients that regularly masasged their hands while receiving RT experienced the biggest improvement. Real life experience from a physician that clearly cares about his patients is more than good enough for me to clear up the concerns I had regarding massage, so I've been massaging.

To say that I'm thrilled at this point is an understatement. If I experience no more progress than what I have right now I will consider this a signficant victory. Of course my goal (as if I had some control over it) will be to stay in this state forever. I will share an update after my 2nd round of RT whether I see additional improvement of not.

I realize the decision of how to treat your DD can be very scary and frustrating and that we are all unique individuals trying to make a very personal decision. I appreciate everyone that has already shared their story and expertise on this forum. I hope that my story can contribute to the overall community experience and knowledge.

01/10/2014 19:42
Jolene 
01/10/2014 19:42
Jolene 
Re: First round of RT and already seeing results

Hi Tami,

Congratulations! Although this conditions is not life threatening it can still be scary. For me I have found it to be life altering.
Glad you are having such wonderful success.

I initially came to this forum because I had 2 nodules in one foot. I embarked on RT using an oncologist from this site who is in Florida. He has been wonderful. Extremely kind. While on my 12 week break I noticed signs in both hands and the other foot. Something I was not expecting. When I returned to Florida for the 2nd round on the foot the oncologist examine the hands and other foot and I began RT the same day also. It is great when they get you in on the same day as the consult. From my experience this is how my oncologist has been with me from day. I am currently weeks out from completion of ALL RT. So far so good

Jolene

01/12/2014 05:24
JohnG 
01/12/2014 05:24
JohnG 
Re: First round of RT and already seeing results

Tami, it sounds like you got the treatment when the disease was active, since it as at a time when you had recently developed new nodules and new cords, and you had sensations in your hands. Is that what you think, too?

01/14/2014 14:23
lori 
01/14/2014 14:23
lori 
Re: First round of RT and already seeing results

Tami,

I am so happy for you. Dr. C. and staff are wonderful. My nodule softened as a result of the RT and is now totally gone or at least I can't see or feel it anymore. That tingling feeling and the feeling that I had an alien crawling around in my palm totally went away with the first round of RT. It was a great way to know that the RT was having some affect. Keep us posted as to the improvment in your hands.

Lori

01/29/2014 01:51
Tami 
01/29/2014 01:51
Tami 
Re: First round of RT and already seeing results

JohnG:
Tami, it sounds like you got the treatment when the disease was active, since it as at a time when you had recently developed new nodules and new cords, and you had sensations in your hands. Is that what you think, too?

Yes John I do think it is in the active stage so I'm hopeful that will lead to good results. I have noticed the contracture in the pinkie on my left hand has gotten slightly worse in the past week and is at about 20%. Dr said that might happen because of swelling but my hands aren't swollen (at least not that I can see). Time will tell on this hand as it was significantly worse than the right hand prior to the RT.

01/29/2014 13:21
cookie4270

not registered

01/29/2014 13:21
cookie4270

not registered

Re: First round of RT and already seeing results

Hi Tami-
Glad it worked so well for you! I just finished my first round on both hands.

I am curious as to what type of massage you do for your hands that your doctor advocated?

I still wear my splint nightly for the corrected contraction I had that was treated with Xiaflex as a precaution, and also sometimes use sliicone scar sheets to help flatten the nodules.
Thanks.

Deb

Edited 01/29/14 15:23

01/29/2014 19:12
Tami 
01/29/2014 19:12
Tami 
Re: First round of RT and already seeing results

Deb-

My massage therapist who is trained in myofascial release said it is a stripping technique. Basically she uses both her hands and a hot stone and really works the palm and fingers and then applies pressure as she runs her hand from my palm down through each individual finger. It's pretty uncomfortable as it puts pressure on the nodes and stretches the cords. I do a much lighter version of this massage myself without the heat and stone throughout the week. I do have some mixed feelings about the massage as my hands tingle for about a day after she does the stripping technique. It always fades but because it is the same tingling that I had before I did my first round of RT, it gives me pause as I wonder if it is 'activating' the DD. I'm planning on sticking with the massage but did want to share my experience/concern. Hope that helps.

02/22/2014 09:31
Tami 
02/22/2014 09:31
Tami 
Re: First round of RT and already seeing results (see update - mixed results)

Here's an update on my RT although not with the results I had hoped. I just finished my 2nd and final round of RT for my hands. During the course of my treatment my DD continued to progress and my pinkie on my left hand went from a 15% contracture to a 35% contracture. Additionally I was diagnosed with Ledderhose in both feet and started RT on them this past week at the same time I was receiving my final round of RT for my hands. I realize that starting RT on a hand with a 15% contracture in my pinkie made me a less than an ideal candidate for that hand, but I was still very surprised to see the finger continue to contract 20% in a 6 week period. I'm keeping a close watch on my other hand which has no cords and my feet. I will update this post if I have any changes. Dr. Crimaldi (who has been wonderful) said he's only had two people in similar stage to me who had continued to contract. Looks like I'm going to be the 3rd.

02/22/2014 12:13
cookie4270

not registered

02/22/2014 12:13
cookie4270

not registered

Re: First round of RT and already seeing results

I'm sorry to hear that Tami, but I hope you have good results on your other fingers and your other hand and feet. I wonder if the massage might be too harsh for a finger that is already contracting? I start my second week of RT for my hands in March and April. I also had a contracture on my PIP joint of my pinky of one hand that was treated with Xiaflex to remove the contracture but it's not 100% normal on the dorsal side of the knuckle. Can you have Xiaflex after RT for your contracting finger? You know the RT continues to work for a long time after you receive it so maybe it will improve.

02/24/2014 01:15
Jolene 
02/24/2014 01:15
Jolene 
Re: First round of RT and already seeing results

Hi Tami,
I am sorry to hear about your finger contracting even more. I wonder if perhaps having NA before the radiation would have helped. I also wonder since you have completed both rounds of RT on hands are you able to have NA on the contrature.

Would you be willing to ask your doctor if he has every treated anyone who has developed DD in the wrist area?

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