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Specialist in Brisbane
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09/11/2011 09:10
paulm 
09/11/2011 09:10
paulm 
Re: Specialist in Brisbane

Hello Alanm
PaulM here again
Its now 7 months since I had the single series of RT. Pleased to say that the lump in the palm of my hand has decreased in size quite considerably over last two months. I can still feel it as I rub my hand in that spot but otherwise it is becoming difficult to spot. (most pleasing!) The chords leading to it are still visible.

I had a small lump below the joint on palm up side of my little finger on the same hand that was treated. At the time of my treatment, the Doctor was not prepared to treat the lump on the small finger, rather he wanted to first see if the RT would have a positive impact on the lumps and chords located near the centre of the palm.

Since my RT on my palm, the untreated lump on my little finger has continued to increase in size. I do not have any contracting happening in my little finger at this stage. I will probably wait a few more months to monitor the hopefully continuing improvement in the lump and chords on the palm of my hand and if positive, may seek treatment on the lump on the little finger. I will advise on progress in a few months.
I also have a chord developing on my other hand but have not sought treatment on it at this stage.
regards
Paul m

09/20/2011 09:41
alanm 
09/20/2011 09:41
alanm 
Re: Spepcialist in Brisbane

Hi Paulm and others. Apologies for not responding but I have changed jobs and hence email addresses and computers and lost all passwords etc. Thanks for sharing your progress. Its good to see there is some treatment on offer in Brisbane. My hand hasn't changed since first diagnosed a year ago so I will wait before having any radiation treatment but I'm keen to see how others fare of course. Now I'm back on line I'll try and keep up to date. Cheers

10/07/2011 05:08
stephenp 
10/07/2011 05:08
stephenp 
Re: Specialist in Brisbane

It is now two months post treatment and there is no doubt that the nodules are getting smaller and flatter and are almost not noticeable. However they are still quite palpable. There are no aches, pain or discomfort. The finger is still numb on one side at the tip. This may be diminishing but this could be just wishful thinking.

Stephen

10/10/2011 09:10
Cyclist 
10/10/2011 09:10
Cyclist 

Re: Specialist in Brisbane

stephenp:
It is now two months post treatment and there is no doubt that the nodules are getting smaller and flatter and are almost not noticeable. However they are still quite palpable. There are no aches, pain or discomfort. The finger is still numb on one side at the tip. This may be diminishing but this could be just wishful thinking.

Stephen

Hi Stephen
This is really great news for those of us in Australia. My feet are recovering from treatment in Germany, but it is good to know I might not have to go all that way if I end up with Dups as well.
Thanks for your posts
Cheers
Di

10/11/2011 15:46
bstenman 
10/11/2011 15:46
bstenman 
Re: Specialist in Brisbane

XRT for Dupuyten's is done with the equipment calibrated to expose only the tissue directly underneath the skin of your hands. It is not deep tissue as with treatments for cancer and so the risk to your organs is less than from everyday environmental exposure to chemicals and for that matter UV from the sun. X-ray radiation of a hand is not going to affect any other region of your body and they use a heavy lead barrier over your organ areas during the exposure to further avoid any stray radiation, though the X-ray machine is highly directional.

I shared the treatment protocol of Dr. Seegenschmiedt with Dr. Penny Snead in San Francisco and she still needed a CAT scan of my hands to calibrate the machine her hospital uses as it was different from that used in Essen, Germany.

The human body can recover from low levels of radiation. Otherwise cancer treatments would always have a fatal outcome. It is also why Dr. Seegenshmiedt recommends the two treatment periods with a recovery interval between them as a precaution. The interval gives the patient's body time to recover before the second radiation treatment.

Dr. Seegenschmiedt has been treating middle aged patients for decades so if the XRT did significantly increase the risk of cancers it would be evident.

10/18/2011 08:04
Cyclist 
10/18/2011 08:04
Cyclist 

Re: Specialist in Brisbane

Hi Stephen
Just wondering about the cost involved here in Australia? Also, were you able to claim any through your private health insurance (if any). I am in contact with someone in Aust with Dups considering Aust versus Germany treatment options.
Cheers
Di


stephenp:
It is now two months post treatment and there is no doubt that the nodules are getting smaller and flatter and are almost not noticeable. However they are still quite palpable. There are no aches, pain or discomfort. The finger is still numb on one side at the tip. This may be diminishing but this could be just wishful thinking.

Stephen

10/20/2011 05:32
stephenp 
10/20/2011 05:32
stephenp 
Re: Specialist in Brisbane

The out of pocket cost was about $1,000. I have submitted a claim to my private health fund but do not know what they will cover yet.

10/20/2011 20:47
annmaiden 
10/20/2011 20:47
annmaiden 
Re: Specialist in Brisbane

I don't know if you read all the posts, but just had my first RT in nashville, tn and I also am his first DD/Ledderhose pt. I really want to thank you for your post as I so read them all. I would like to know how you responded to the tx. Did your hands get red, burn swell, anything. Mine did not get red, no burning just a little swelling at the site of the nodules.
Please share everything about your tx. as I am very interested as it was not done in Germany (which gives me hope that you don't have to go there to have success. Again thank you for sharing.

10/26/2011 01:59
stephenp 
10/26/2011 01:59
stephenp 
Re: Specialist in Brisbane

Some specific answers to your questions:

There was no swelling during or after either treatment

There was no redness during or after either treatment

The skin in the treated area became slightly darker after the second treatment although this was barely noticeable is still apparent

The skin in the treated area was dryer and responded to moisturizer

During and after both rounds of treatments, there was occasional aching and tingling in the hand. This did not require any analgesia. It was not severe enough to stop activity nor keep me awake etc This stopped within a few days post treatment.

At times the nodules were a little painful if palpated (which was often post treatment). This is not severe and has continued to the present although may be decreasing (not sure about this)

As you would be aware everyone seems different although from what I can glean, my experience seems to be following a typical RT pattern.

Hope this helps

Stephen

03/29/2012 05:29
stephenp 
03/29/2012 05:29
stephenp 
Re: Specialist in Brisbane

As it is about 6 months post radiotherapy treatment I thought it was worth an update. The nodules continue to shrink although I think it is slower than it was earlier. Both nodules and the cord are still easily palpable. A rather odd "gap" of about 2-3 mm has appeared in the cord. The numbness in the finger has all but gone. A few weeks ago I had considerable aching in the treated hand for a few days and I was concerned that activity had recommenced. I also noticed a twinge of pain on stretching, the first time in many months. The ache has now passed so I remain hopeful. The skin remains a little dry but is of no real concern.

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