| Radiation therapy in New Zealand |
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11/09/2013 06:31
GaryBall 
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11/09/2013 06:31
GaryBall
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Re: Radiation therapy in New Zealand
kassie:
Hi Thank you to all who posted here, i learned a lot. I was diagnosed earlier this year (2013), learnt about Dr van der Groot in Hamilton from the postings here. I received a very polite and encouarging answer from the Waikato DHB, but the bottom line was - i needed a referral from my own DHB (i live in Auckland) first, and my GP was very pessimistic about the process and reluctant to start it. So I dug a bit more and found that Professor Benjamin has started doing RT recently, at the Auckland Hospital. As I said my GP did not know know anything about the RT treatment at all, i was supplying all the information. Luckily she had heqard about the Professor and agreed to write a referral. I have had two sessions so far (at Auckland Hospital), 5 more to go. No negative effects. No positive ones either although yesterday i had the feeling that there was less tension in the palm. Early days yet, I will write again to report on the outcomes. (I also found out that while my insurance with Southern Cross would cover surgical treatment it would not cover RT).
Please keep us in the loop Kassie......I was aware of Dr. Benjamin 2 years ago when I was first diagnosed with LD.....I did consider chasing through the system to get treated in NZ.....at the time he had treated only a few patients .....so I jumped on the plane to Hamburg......I will probably need RT in the future for my hands as I have early stage DD ....I would be very interested in your experience....
Gazza
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11/09/2013 06:41
kassie 
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11/09/2013 06:41
kassie
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Re: Radiation therapy in New Zealand
Hi Gazza, will definitely post again. Dr Benjamin has treated only a few patients this is right; I thought about it, too, do I want to go for it but decided yes. From what I have read it seems to me that the treatment is pretty straightforward. So I hope it will be successful.
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11/09/2013 09:12
Lanod 
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11/09/2013 09:12
Lanod
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Re: Radiation therapy in New Zealand
kassie:
... I have had two sessions so far (at Auckland Hospital), 5 more to go. ....
Kassie, I wish you every success. As a matter of interest what do you mean by "I have had two sessions so far (at Auckland Hospital), 5 more to go". Is the RT a single treatment over 7 days? What is the daily dose .. 3Gy?
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11/10/2013 17:59
kassie
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11/10/2013 17:59
kassie
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Re: Radiation therapy in New Zealand
Hi Lanod, thank you for the good wishes. Yes, one treatment that includes 7 sessions altogether, did 2 last week and will do 5 this week, had a break over the weekend. I will double check today the numbers when I go to the hospital and will write again, want to be correct. As far as symptoms go, there is a reduction in the tension in the palm, I could feel it during the weekend. The nodule seems to have flattened a bit and gripping objects seems to be not that hurtful or painful, slightly easier. The cord is still there. I did not take a 'before' photo as I should have. I have what someone called a classic case, a nodule and a cord under the index finger on my left palm. The cord had started pulling the palm, using the hand was becoming a problem, even driving. And even without having a well developed contraction yet, I am keeping my fingers bent to protect the palm from direct contact.
Edited 11/10/13 20:50
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11/10/2013 18:41
Lanod
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11/10/2013 18:41
Lanod
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Re: Radiation therapy in New Zealand
kassie:
Yes, one treatment that includes 7 sessions altogether, did 2 last week and will do 5 this week, had a break over the weekend. I will double check today the numbers when I go to the hospital and will write again, want to be correct.
Hello Kassie. Can I try to make a few points that might be helpful (note - I am not at all an expert..):
1) The optimal RT treatment - based on published research results - is understood to be two sessions, with each session being 5 consecutive days of 3Gy per day; with a 12 week (approx) separation time between sessions. (that is a total of 30Gy:(3x5)x2))
2) However, a single treatment of 7 consecutive days (broken by a weekend) does yield quite good results as detailed in the 2012 Phase III Clinical Study paper from Seegenschmiedt et. al.
3) Since you are being treated with a single session of 7 days I assume that each day you are receiving a dose of 3Gy per day, so that you will have a total of 21Gy over 7 days. If you receiving less that 3Gy per day than your dose is probably too low.
4) Do not expect to notice any meaningful results of RT treatment in the short term - monitor progress over the weeks and months (and years!). You may find short-term changes but wait some time for things to settle for the long term status.
Kassie - again wishing you a successful outcome!
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11/14/2013 08:15
BrianHardaker
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11/14/2013 08:15
BrianHardaker
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Re: Radiation therapy in New Zealand
Thanks Gazza,
Well I've just had a 1st appointmernt with a Dr Scott Babington fo the Christchurch Oncology department. He confirmed that this can be treated but spent quite a bit of time warning me about the dangers of radiation (potentally cancer causing in 10 - 15 years) and he said the chance of success was 65-70%. Although because my node is on the palm of my hand the chances of cancer were lower as that area doesn't get much damage from the sun...
Anyway he is refering me to a hand surgeon for a second opinion and believes I may be able to start treatment after this once they have a free slot, although priority is always given to cancer patients. Given the time of year I'm not expecting to see the surgeon much before Feb next year but I don't know for sure.
He indicated that there appears to be some reluctance by "others" in the hospital to providing this treatment but he didn't really say why. He did say that the treatment was a course of radiation 1 per day for 7 days & that was it. He also said it may return and that the process would be the same again.
Thats about all I can tell you at this stage but will again post more once I have some idea of when something else will happen.
All the best
Brian
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11/14/2013 20:32
kassie
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11/14/2013 20:32
kassie
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Re: Radiation therapy in New Zealand
Hi all, reporting again , my apologies for not doing it earlier, got very busy. First to clarify: yes, I was prescribed 7 sessions over two weeks, 3 Gy per session or overall 21 Gy for the one single treatment. Thank you Lanod, for prompting my to make sure I know. I am having the last treatment today. Felt a bit tired during the week but not sure whether it was the therapy or something else. However the therapists confirmed that other patients had complained of tiredness as well. Otherwise no negative symptoms, and I definitely feel that i can stretch the palm more easily than before. I took a photo after the first two treatments, will take one tomorrow, and then regularly. And will report back here on what is happening. The radiation therapists at Auckland Hospital are an excellent team, very efficient (I never had to wait , the treatment always started on time) yet considerate and friendly, and doing everything possibe to make you feel comfortable. I felt I had to share this too. They were also interested to know more about it as it was a new form of treatment with only a few patients treated so far. Thanks again to every one for sharing, without the forum I would have never known about radiation therapy as a viable option.
Edited 11/16/13 23:30
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11/14/2013 20:56
GaryBall
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11/14/2013 20:56
GaryBall
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Re: Radiation therapy in New Zealand
hi kiwi s
It is good to see that there is some traction in NZ as there is in other parts of the world regarding this useful early stage treatment.....it has been well established in Germany for many years and there is good data on different procedures....you will find all of this information if you search through the forum and patients experiences....there is a lot to read....
One point I would like to make to Brian is that the cancer risk would appear to be under 1 percent using the 30 gy procedure...
If you would like to call for a chat I am always happy to share info....I am at 073084227
Best of luck to you in your treatments
Gazza
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11/15/2013 21:16
kassie
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11/15/2013 21:16
kassie
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Re: Radiation therapy in New Zealand
[...He indicated that there appears to be some reluctance by "others" in the hospital to providing this treatment but he didn't really say why. He did say that the treatment was a course of radiation 1 per day for 7 days & that was it.]
Hi Brian, good luck with actually getting the therapy. I completed my 7 day treatement , as perhaps you know from my posting. Just wanted to add that my doctor did not discuss with me options suchs as 30Gy vs 21 Gy (7days vs 2 x 5 days). In anothe post i read that Dt De Groot had also chosen 21 Gy. Perhaps the specilaists in new Zealand have all decided it would be safer to start with the lesser dose and get more data first. I am not sure of course just speculating. I will ask my doctor about it when i see him in 6 weeks time.
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11/15/2013 21:24
kassie
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11/15/2013 21:24
kassie
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Re: Radiation therapy in New Zealand
GaryBall:
hi kiwi s
It is good to see that there is some traction in NZ as there is in other parts of the world regarding this useful early stage treatment.....it has been well established in Germany for many years and there is good data on different procedures....you will find all of this information if you search through the forum and patients experiences....there is a lot to read....
One point I would like to make to Brian is that the cancer risk would appear to be under 1 percent using the 30 gy procedure...
If you would like to call for a chat I am always happy to share info....I am at 073084227
Best of luck to you in your treatments
Gazza
Hi Gazza thanks! I was trying to find out in your earlier posts about the outcomes from your treatment in Hamburg, was it successful? I guess 'yes' ? Cheers, Kassie
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