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*Jon*
Junior Member

Registered: Oct 2008
Location: Shipston on Stour
Posts: 4

	*Hd Il2*

Should we not have a section here to deal with HD IL2 treatment?
Although difficult to get here in the Uk it is a very important therapy
and information on it should be available to anyone visiting this site.
I myself am udergoing the treatment at the Chritie hospital. I am aware
of one other post in the discussion section from someone is also being
treated there, but have had to get my information from the US site,
kidney onc, and web browsing.

Jon

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Old Post 16-02-2009 09:17 AM 	
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*julie hill*
Senior Member

Registered: Mar 2007
Location: cheshire
Posts: 221

	**

Hi Jon, I agree with you that it would be useful to have a section on
here, dealing with High Dose IL2, but from what I have read, it appears
most kidney cancer patients are not eligible to receive it, because of
age, other health problems, or lack of access to centres with adequate
expertise.
We are very lucky in the North West to have a cancer centre like
Christies, and I met a lady when I was in hospital who had had ILK2, not
sure if it was high dose, but she was back working in the hospital, and
I met her 3 years on, still working. In fact it was a great comfort to
me after my kidney cancer op, to know she survived it and was still around.
Kind regards, Julie.

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Old Post 16-02-2009 05:29 PM 	
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*Jon*
Junior Member

Registered: Oct 2008
Location: Shipston on Stour
Posts: 4

	**

I think more people may br eligible than you think and anyway if people
don't know about it they they can't check out their suitability. Do you
know how we could get a section going? I would happily write an
introductory note.

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Old Post 16-02-2009 05:39 PM 	
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*julie hill*
Senior Member

Registered: Mar 2007
Location: cheshire
Posts: 221

	**

I have contacted admin on the front of the website, and left a message,
or you can post a reply in the treatments section, try either of these
options Jon.
It would be useful if you could mention side effects too, but these are
only suggestions, and I am just a fellow kidney cancer patient, although
trying to arm myself with info.
Julie

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Old Post 16-02-2009 05:49 PM 	
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*JaneyB*
Member

Registered: Mar 2007
Location: Birmingham
Posts: 80

	**

I underwent HDIL2 last year at Christies. Ive written about my
experience extensively on my blog.

As well as the patient being suitable the 'tumour type' has to be suitable.

Jane

http://a-journey-of-another-kind.blogspot.com/

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Old Post 16-02-2009 07:28 PM 	
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*Jon*
Junior Member

Registered: Oct 2008
Location: Shipston on Stour
Posts: 4

	**

Hi Janey, I have now read your blog. Very entertaining! It is helpful to
know the details of your experience. You gave a link to the Kidney
Cancer Support Network Site which does have a HDIL2 section. How do you
see that site working in comparison to this? As for my suggestion on
HDIL2 I was concerned useful if people could be able get the low down on
the treatment as well as individual experiences. I found the site a
couple of years ago but only found out about IL2 through trawling US web
sites.

Here's to life
Jon

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Old Post 17-02-2009 06:16 PM 	
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*julie hill*
Senior Member

Registered: Mar 2007
Location: cheshire
Posts: 221

	**

HI Jon, as this site is a patient led one, you could put something in
the treatment issues column, telling of your experience on HDIL2, to
help others. I have read a bit about it, side effects that others
experienced, but this would be better coming from someone who is
currently having treatment.
We are all in this together and knowledge does empower one to make
choices, even if they are limited ones.
I noticed that no one had put a post regarding this subject on the other
site, so maybe you will get a response on this one.
best wishes, Julie Hill

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Old Post 18-02-2009 09:13 AM 	
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*Jon*
Junior Member

Registered: Oct 2008
Location: Shipston on Stour
Posts: 4

	*ASCO Article on Predictive response to HDIL-2*

I ste out below an abstract that I was made aware of from the Kindey onc
mailing list. Very interesting results...

Results: Our observations identified three histological features in the
clear cell carcinoma which predicts good prognosis to treatment:
>50% alveolar/solid pattern,
up to 50% granular cells
up to 10% papillary pattern.

Tumors containing all three features have a good prognosis for response
to IL-2 and the response rate in this group was 66% (9 of 14) with 29% (4 of
14) CR rate. <=== 66% !!!!!!!!!!!!!!!!!! And 29% Complete Response!

The presence of only 2 prognostic features would predict intermediate
prognosis and the response rate was 31% (4 of 13 patients) with 2 patients
(15%) in complete remission. <=== More wow

Conversely, the presence of 0-1 good prognostic feature predicted poor
response to IL-2 treatment with only 7% response rate (1 of 14).

Combining the good and intermediate groups (those to whom we currently
offer this treatment) the response rate is 13/27 (48%) with complete
responses at least 6/27 (22%).

The median overall survival of the poor prognosis group is only 12
months while the median overall survival of the good/intermediate group
not reached (95% CI 17-47 months). <== Median hasn't even been reached yet

Conclusions: Based on histology, it is feasible to select patients with
metastatic renal cell carcinoma to treatment with high dose
interleukin-2. Even with the new treatment agents (such as the anti
angiogenic agents) this treatment should be considered as initial
therapy for selected patients. ========
REPEAT:
Even with the new treatment agents (such as the anti angiogenic agents)
this treatment should be considered as initial therapy for selected
patients.

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Old Post 19-02-2009 10:59 PM 	
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*JulieJ*
Senior Member

Registered: Jun 2008
Location:
Posts: 121

	**

Don't forget, you must get checked for brain mets before starting HDIL2
(and this does not always happen, even at Christies, I have heard from
someone who wasn't pre-tested beforehand, even though he turned out to
have them...) - this is not just because HDIL2 won't work on brain mets,
but because it becomes dangerous!

(There's a good explanation about this on kidney-onc).

You have to get rid of the brain mets first, before starting HDIL2.

All the best, Julie.

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Old Post 23-02-2009 05:47 PM 	
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*JulieJ*
Senior Member

Registered: Jun 2008
Location:
Posts: 121

	**

Forgot to add - it appears that HDIL2 works better if you haven't yet
had Sutent (so good news for all Nice victims.....!???)(talk about an
ill wind....)

Also, it would also appear that having had HDIL2, even if
unsuccessfully, increases your chances of Sutent working for you.

On the downside, there is some evidence, I believe, starting to
accumulate that having HDIL2 after Sutent decreases the chances of HDIL2
working.

(again, more on this on kidney-onc)

Best, Julie.

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Old Post 23-02-2009 05:49 PM 	
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