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Dec 17, 2009, 7:16am

Akcos Forum :: General :: General Board :: Hello - Introduction

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Topic: Hello - Introduction (Read 42 times)

cebbj47
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Hello - Introduction
« Thread Started on Aug 28, 2008, 4:42pm »

Hello I am a carer (mum) for my 16 year old daughter. I have just found this site as I mostly just read “lurk” on the US ACOR site and was reading one of Chrissy’s updates admiring her courage and determination and found this Akos link at the bottom of her post.

I am wondering if there are any other mum’s out there with a younger child like Bec who is on Sutent – I really hope not but if there is I would love to be able to make contact with someone in a similar situation. With the Sutent being a home based treatment which is great and much easier than a more std chemo in hospital I do not get to meet any other parents to have a chat with and often feel quite isolated by this. Friends and family are very supportive but sometimes they just don’t understand the emotional roller coaster and anxiety that you feel.
Bec’s background: Bec was re diagnosed with multiple mets to both lungs in May 2007. There were 9 mets about 6mm in size with 3 growing to 1.3cm in 2 months before starting the Sutent in July 07 the watch and see strategy didn’t last long !!!
She had previously had a very large RCC tumour (about 2kgs) and left kidney removed in June 2006.
Bec started sutent on 17 July 07 on 50mg per day 4 weeks on 2 weeks off and only managed 2 cycles with feet and hand, thyroid (now on a replacement dose), and general quality of life issues. We reduced to 37.5mg 4on/2off for the next 4 cycles but due to build up of side effects again in Mar 08 have just finished our 4th cycle of alternating 37.5mg and 25mg per day but still 4w on and 2 off.
Good news mets are stable, down side still very live and no shrinkage and not operable.
We use emu oil hand cream (on her feet), washers dipped in ice water and a light cotton sock (courtesy of Xeloda) on the worst sutent days. Each cycle is different but the current dose gives her better days and her break is pretty good and packed with lots of treats and as many holidays as work and school will permit.
The easy side effects are the grey hair eyebrows and eyelashes - thank goodness this is easily fixed. Her RCC type was thought to be ASPL TFE 3 (typical for her age group) however we have just been told that some additional staining done has come back negative and it is now being tested in New York. If this is neg then we will be unclassified which will just mean next line of treatment after Sutent may be a little more hit and miss.
Happy to answer any Sutent q’s or accept any hints that others may have.
Thanks for reading, the writing helps when I am having a bad day

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dmaskens
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Re: Hello - Introduction
« Reply #1 on Jul 7, 2009, 6:53am »

Replying to Mum of 16-year old daughter with rcc. I live in Canada, but I was diagnosed with rcc at the age of 14. I am now 49, living with mets and on a new drug (XL-880) that I get in Washington DC.

I know that the National Institute for Health in the U.S. is VERY interested in these early cases of rcc -- especially with such a young age of onset. If you would be willing to deal with them at a distance, they might well re-do your daughter's pathology and give you an expert opinion. If her pathology is rare or unclassified, this could really help you sort things out. All of this is done free of charge., but it takes a little legwork to send over the slides etc. The lead doctor there is Dr. Marston Linehan. He has spent his entire life researching these rare forms of kidney cancer.

If you want to email me offline, I can be reached as:
debmaskens@kidneycancercanada.ca

Deb

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