Re: Question: do you have a support group in AU? « Result #1 on Jul 25, 2009, 3:37pm »
Hi Deb,
So sorry it has taken so long to get back to you. We did have an AKCOS website, but sadly, it has gone the way of most good websites. Maybe when I am feeling a bit more "with it" I will get another started.
Question: do you have a support group in AU? « Result #2 on Jul 7, 2009, 6:57am »
Hello from Canada, I'm writing to see if someone could point me to a contact or a website for an Australian Kidney Cancer Support Group.
Here in Canada we formed a patient support and advocacy group and have had some success getting the key drugs for rcc funded. I would be very interested to speak with anyone who is doing something similar in Australia or New Zealand.
Thank you. Deb, fellow patient with papillary rcc live near Toronto, Canada diagnosed 1974 at age 14; currently 48 and dealing with metastasis. Taking XL-880 on Clinical Trial in the U.s.
Re: Hello - Introduction « Result #3 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
Joined: Jan 2008 Gender: Male Posts: 5 Location: melborne Karma: 0
If I can return the favor « Result #5 on Apr 12, 2009, 11:40pm »
Hi I'm a 44 year old male who found out that i had a tumor in the left kidney in Jan '08 and had a hand assisted lap neph in Feb the same year. I am " lucky" in that when they removed it, although it was only 38 mm, it had entered the renal vein and staged at 3Tb. At this point I am NED, but getting over another "symptom" has been extremely hard. I have been living in Melborne for the last couple of years, away from my family, which is in Brisbane. Depression, I have found out since, is extremely common in people who have had a cancer detected. If it had not been for this forum, and the chats i was put onto by Chrissy ( hope your doing better ) I don't think i could have gotten through it. I'm now moving back around Brisbane . If you find your self in my position don't do what I did (or didn't do). Being a stupid tough male nearly killed me before the cancer had the chance. I still (probably like the rest of us) have a lot of bad days but I know we need all of the health we have both physical and mental to help our immune system fight any recurrence or spread. If anyone fighting this beast finds themselves in the same position my email address is not hidden, and I would love to repay some of the help people from this forum, listserv, and the chats have given myself. Fingers, toes and everything else crossed for the future, after all, " They got it all".
Hello - Introduction « Result #6 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
Re: Where is the Cancer train taking us? « Result #8 on Apr 28, 2008, 10:38pm »
Hi Chrissy,
Thanks for your message. I hope your own surgery went well. We visited dad's specialist today to see what his recommendations are, and as expected they are for a partial nephrectomy. We are visiting a dialysis doctor next week to prepare for that in the event that the remaining half of kidney fails to work or needs to be removed also during surgery.
I enquired about cryoablation and apparently our doctor (Peter Aslan) has performed the only three here in Australia, but he says they should only be done on tumours 4cm and smaller. The clinical trials at the Mayo Clinic in the US show results for tumours 7cm and less, though long term results are not yet known.
I think dad is still getting his head around all of it, as we all are. Best case scenario would be a successful partial nephrectomy. We are still pursuing the Mayo Clinic option.
Cancer treatment at the Mayo Clinic starts at $50K, but for private patients with no US health insurance they require a $300K deposit. I almost fell off my chair when I received this info. I told my folks about the $50K but didn't have the heart to tell them about the $300K.
Re: Where is the Cancer train taking us? « Result #9 on Apr 21, 2008, 7:58pm »
hi Margaret,
Sorry that my reply to you is a bit tardy, but I only came home from my own surgery last Thursday.
First up, I can understand your frustration in your dad not wanting any further surgery. however, have you or any of your family members pointed out to him how "selfish' that is with regards to the woman he loves, especially as she is so dependant on him? Tough love often works.
Also, the treatments available for RCC are far superior in the States than in Australia. We are very slowly catching up, but our powers that be, always want to double check your findings ... suspicious lot!
Here are some web links that can help you ... and to the best of my knowledge, cryoablation is alive and well in the States, but you will have to search for centres that practice it. The kidney-Onc list listed below, is a great wealth of information.
1) The Kidney-Onc Listserv, is a mailing list of over 1500 people who all have a connection with kidney cancer, either as patient or carer, family or friend..
This is probably the greatest source of information about Kidney Cancer that can be found anywhere. An email to the list can receive an almost instantaneous reply, from someone who is talking from their own experience.
Members are from all over the world, but most are from the United States, so we Aussies have to remember that many things that are available to them are not so easy to find here, still, it is a great font of information.
I always suggest to people that they sign up for the digest so that you get 1 or 2 emails per day containing all the posts, as against getting all the posts sent separately.
2) Steve Dunn created CancerGuide and wrote a special, detailed section on various aspects of kidney cancer:
Some of the information is now a little outdated (esp. new treatments) but it's still a really good overview of the area.
We also run chats every week, which are very helpful. The following times are USA ones, as we keep their times the same and change ours to suit ... there's more of them!!!, so check the time for you and feel free to join in. my chat is
These are the scheduled chat times, although the room ... www.kcachat.org ... is open 24/7.
Thursday Survivors Chat (8 PM USA EST) Friday in Oz
Monday Open Chat (10 am USA EST)
Sunday Caregivers Chat (10 PM USA EST)
Tuesday Open Chat (8 PM USA EST) Wednesday in Oz (my chat)
Chrissy wife and carer to Jeff dx 96 stage 3TC, upgraded to stage 4 Dec. 03 after met to left lung removed, latest scans show mets to right and left lungs. We are playing the wait and see game.
Where is the Cancer train taking us? « Result #10 on Apr 18, 2008, 11:44pm »
Hello Everyone,
Firstly let me begin by saying how impressed and inspired I have been in reading the posts that are on this forum. It is like holding hands online. It gives me strength.
My dad has RCC. He had one kidney removed in 2001 and now his remaining kidney has a 6.5 x 6.2cm tumour on it. We are waiting to see what the next step will be (appointment at the end of Apr 08). Dad is refusing surgery again so I am not sure what our options will be.
I still feel quite dumb and stupid about it all. Were we all really that naive when he had his kidney removed in 2001? We were all naturally scared about the procedure but in looking back I feel as if the surgery happened and we all thought "phew, that's over, let's get on with things and we won't see it again". And yet here it is, again, biting us on the bum big time. Should we be surprised? Probably not. In retrospect it is probably something we should have expected and now that it is here we don't quite know what to do with it. Is it the beginning of the end? Are we overreacting? How can we be as proactive as possible?
It is the first time we have been in this position of cancer in the family so we are all unsure how to approach it. We can't make dad have procedures if he is unwilling. We want to ensure he has as much information available to him as possible so the decisions he makes are well informed (English is his second language so he will rely predominantly on myself and my sister). Mum is quite dependent on dad with daily life so we are all silently getting her independent again. It is like doing something without acknowledging the motive.
I am sure you have all been through this gamut of emotions and life logistics.
At present, seeing dad is refusing surgery, I have been doing some research as to what else is available. I have come across a procedure called "cryoablation" at the Mayo Clinic in the US. Has anyone any experience/knowledge of this? Has anyone else explored overseas options? How different are they to Oz? In reading some posts it seems that there are some avenues that people have explored where doors are widely open, but unfortunately many where they are firmly shut. It is all such a maze.
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