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DulcimerGal
Senior User
Joined: 01 Apr 2008
Posts: 114
Location: Virginia
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 Posted: Tue Jun 03, 2008 9:00 pm Post subject: Update on supportive therapies and other stuff |
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Hi everyone,
I have mentioned here before that I am interested in some supportive therapies and investigating other ways to help myself....not sure if Jim might think I should have posted this on the alternative and complementary therapies forum - Jim - if you need to move this - then feel free - but my posting friends are on the Colon and Rectal SIte!
So - last week I had a two hour consultation with the Herbalist from the Centre for Natural Healing in Oregon ( Jim - can I post links? Am I allowed to do that?)
It was very informative. He has sent the list of supplements and herbs, and today I ordered a one month supply of the Protocol he recommended. Yes it was very expensive. I am not actually planning on this stuff being a cure - but rather I am looking to get my energy back and to heal more quickly from the upcoming surgery, and then deal with the chemo treatments without turning into a zombie. I want my quality of life to be OUTSTANDING!
The stuff should arrive Friday - I already talked with my surgeon and he is going to look over the list Thursday when I see him, he may have me stop a few days before surgery and right after - but he has been very supportive about me exploring other ways to stay well.
Here is the extra interesting piece - This Herbalist Doctor also recommended that I have "resistance and sensitivity testing" done on the tumor cells - the group that does it is in LA and the path lab will have to ship the cells there overnight if the surgeon agrees. This testing will be done on the tumor cells with different drugs and drug combos to see which ones my tumor is most or least responsive to.
I am calling my insurance company tomorrow to see if they will cover it, they may not....
Has anyone else had experience with this testing - or heard of it?
I would post the link to the webiste - but want Brainman' OK first!!!
Or you can send me a PM. This all has to be arranged before my surgery, as this group sends the transport kit and directions to the hospital path lab prior to the surgery.
Just thought you guys might find this interesting
Jim - I will understand if you think this should be some place else...
Cheers guys!
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left! |
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DulcimerGal
Senior User
Joined: 01 Apr 2008
Posts: 114
Location: Virginia
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| Posted: Thu Jun 05, 2008 8:09 pm Post subject: Re: Update on supportive therapies and other stuff |
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Hey - where is everybody?
It's getting bad when I gotta talk to myself!!!
Quick update after seeing my surgeon today - he looked over my list of Herbal supplements, tonics, powders and other stuff and blessed it as good for me....so I am ok there. He was also VERY positive about the resistance and sensitivity testing - he says the pathology lab at the hospital is familiar with the procedure and he will have no problem making sure he gets the cells for testing sent down.
Also - since I am VERY concerned about bleeding in surgery ( my original diagnosis came about because my tumor ulcerated and I had copius bleeding) he is also allowing me to donate my own blood this week before the surgery. I really wanted to do this for two reasons - 1) I've read recent horror stories about blood used closer to the expiration date (30 days) not being nearly as good as fresh blood......and 2) when they gave me two units of blood the first time I was diagnosed - I had low grade fevers both times as my body adjusted......
Seems to me I want to help myself anyway I can - so I am donating Monday for ME! Just thought someone else might be interested. MY Doc says there is usually very little blood loss with this surgery - but once in a while....so I am not taking any chances.
Also - my HR folk are going to ensure insurance pays for the resistance testing - so I am also setting that up too. It's getting to feel like Project Management at Work just managing my own care............
Hope everyone is ok -
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left! |
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Vee Smith
Moderator
Joined: 12 Feb 2006
Posts: 789
Location: UK
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| Posted: Thu Jun 05, 2008 8:38 pm Post subject: Re: Update on supportive therapies and other stuff |
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You aren't talking into the ether - I expect people are thinking about what you have said.
I have heard of and nearly took the testing you mention, but was put off by the process and cost. It would be great if it was something that could be built into the system.
I am also a great believer in self-help to build the system's ability to cope with the effects of treatment and the disease. My onc. has encouraged me in my efforts and has just approved the use of LifeMel Honey when having chemo. |
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DulcimerGal
Senior User
Joined: 01 Apr 2008
Posts: 114
Location: Virginia
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| Posted: Fri Jun 06, 2008 8:22 pm Post subject: Re: Update on supportive therapies and other stuff |
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Vee,
Thanks for answering - I know folks do read and digest often before posting back, but it was nice to get your reminder! Thank you.
On the resistance testing - my HR Director called me today and told me this sounds like something we should automatically be able to get under our insurance policy, she is going to push for it to be included the next time our contract is re-upped...meanwhile - it looks like they will figure out a way for me to be covered, so I am going ahead.
I am using the Weisenthal Group in LA - they set everything up and send out the kit so the Path lab can overnight the cells back to them on ice. I am pretty impressed with how easy they make it.
Tell me more about LIfeMel honey......? is it only available in the UK?
All my stuff from the Centre for Natural Healing arrived today...it is daunting how many things there are - but I shall sort it all out in the morning and make my first Shake for breakfast....
Good luck with your chemo
DulcimerGAl
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left! |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 4214
Location: Tennessee
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| Posted: Sat Jun 07, 2008 12:35 pm Post subject: Re: Update on supportive therapies and other stuff |
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Sorry that I have not replied sooner. In fact, this is the first time I have read this thread. I have had "information overload" over the last week and fell way behind  .
DulcimerGal you can post any link you want as long as it is not an ad.
Regards
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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Vee Smith
Moderator
Joined: 12 Feb 2006
Posts: 789
Location: UK
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| Posted: Sat Jun 07, 2008 4:26 pm Post subject: Re: Update on supportive therapies and other stuff |
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[quote="DulcimerGal"]
Tell me more about LIfeMel honey......? is it only available in the UK?
All my stuff from the Centre for Natural Healing arrived today...it is daunting how many things there are - but I shall sort it all out in the morning and make my first Shake for breakfast....
Good luck with your chemo
DulcimerGAl[/quote]
It is available in the US - do a search on the name and you will find their website.
Good luck with your stuff from CNH! |
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