• From: Calgary, AB Canada
  • Registered: Sat, 30 Oct 2010
  • Posts: 25

Topic: alternative help??

My mother is stage 4 unresectable and we were told that palliative chemo was our only option, but she is too weak for that at this point.  On that note she is still able to take care of herself, prepare things and general hygiene as well, but it is an effort for her and she is very tired by late afternoon.  This is a very sensitive time right now and I feel desperate to find something that can provide any help to her while she still has some energy to do so.  We are fighting against the clock unfortunately!  Sometimes it is such a hard battle to try to determine what is best when it comes to alternative, conventional. or both. It is evident for her though that our only choice is alternative care since our oncologist won't give her chemo at this point which obviously made the decision very easy for us.  Is there anyone that knows of any really advanced and well recognized alternative treatment clinics??  We are even willing to travel if not too far. We are located in Alberta, Canada. Can anyone give me any reccomendations?? I feel pretty helpless and want to help her so bad!?

This is so hard and I fear i'm running out of time.

thanks
Janet

  • From: Chicago, IL
  • Registered: Sun, 15 Jun 2008
  • Posts: 710

Re: alternative help??

What about photodynamic therapy (PDT)? It does not have the side effects that chemo has. If you use the search function you will find posts about it. Gavin's father had this treatment.

Patty

tiapatty's Website

  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,831

Re: alternative help??

Hi Janet,

Were you able to speak with your mums doctor about the possibility of PDT for your mum? My dad had this as Patty says, and Patty is also right about the side effects of PDT being far less than that of chemo. PDT does have one large side effect in that a persons skin becomes extremely sensitive to direct sunlight for between 6-8 weeks, although this can be easily overcome with clothing and dark glasses when outside.

My best wishes to you and your mum,

Gavin

  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,831

Re: alternative help??

Hi Janet,

Here are a couple of posts I did a while ago that go into more detail about my dads PDT experiences. If I can help in any way further then please just ask and I will help if I can.

http://www.cholangiocarcinoma.org/punbb … hp?id=1940

http://www.cholangiocarcinoma.org/punbb … hp?id=2089

My best to you and your mum,

Gavin

  • From: Calgary, AB Canada
  • Registered: Sat, 30 Oct 2010
  • Posts: 25

Re: alternative help??

Hi Gavin and Patty that is exatctly what I was thinking as well! Unfortunately I was unable to attend her oncoloist appointment the other day, but her and my brother asked about it and they claim it is not used for biliary cancers and they would do it if the cancer was in her esophagus.  I've read it being used for bile duct cancer everywhere. I wish I was there to have challenged him on it maybe he just needed some persistance?? I don't know.  We are waiting to speak with another oncologist, but apparently that is gonna take weeks.  I guess I need to try and speed that up.  If anyone has any insight let me know.

thanks so much for your help!  I have a really strong feeling this may help her.

Janet

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: alternative help??

Janet.....You might also want to peruse our Nutrition section in where several of our members have passed on their information.  Also, by using the google search function and typing in the word "nutrition" you might find some more helpful information.  People have a tendency not to eat enough when diagnosed with  this disease therefore you might also want to make sure that your Mom continues to eat high caloric foods. 
I am sending all my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,831

Re: alternative help??

Hi Janet,

Sorry to hear that you were not able to attend the meeting the other day with your mums onc. I know you say that the onc said that PDT was not used in treating CC, but what else did the onc say about what they could do for your mum?

I think that PDT was more widely tried as a palliative measure here in the UK and Europe more so than in North America. From memory, I think I have only read of a few people who have PDT in the US/Canada and I think that they were part of trials. Indeed, here in the UK, PDT is not given as a standard treatment to CC patients although some specialist centres do still offer it. Back in 2008 when my dad was diagnosed, there were I think 6 NHS hospitals in the UK that offered this treatment as part of a trial for treating CC, but I understand now that that trial has stopped.

As I said to you in another thread, no one here can tell you if your mum would be a candidate for this or if it would work if she were to receive it. Perhaps you could mention it to the next onc that you see and see what they say about it. And I do hope that you can manage to speed up your mums app with that next onc.

My best wishes to you and your mum,

Gavin

  • From: Calgary, AB Canada
  • Registered: Sat, 30 Oct 2010
  • Posts: 25

Re: alternative help??

Yes I realize I need to go through our oncologist, unfortunately they have nothing to offer her, they've pretty much given up on her.  This is what makes if frustrating. I will have to wait and see what the other one says I guess.  Thanks for the insight I see that PDT is very hard to come by down here unfortunately.

thanks for the support
Janet

  • Registered: Wed, 07 Apr 2010
  • Posts: 73

Re: alternative help??

Janet:

Two recommendations are the book "Knockout" by Suzanne Sommers.  And the Life Extension Foundation--they have naturopathic cancer specialists (2) available to talk with by telephone, their membership is still $75 per year I think, and they sell many different supplements on-line that help to improve cancer-fighting odds for anyone who cares to try.  They've helped me. (and Andie's list has many supplements that he's used to fight cancer.)

  • From: Calgary, AB Canada
  • Registered: Sat, 30 Oct 2010
  • Posts: 25

Re: alternative help??

thankyou kentuckyJack I will try that.  I find it strange that our oncologist has said there is nothing they can do for her on 2 occasions now as far as chemo at this point based on a 15 minute consult judgement on her energy level.  He claims she is slightly too weak but meanwhile she is fending for herself everyday.  Yes granted she needs rest breaks. but she is coping just fine and has even gained 4 pounds in the last 2 weeks.  It is apparent to me that maybe that is a sign she should steer away from chemo even if they offer it to her later.

  • From: Calgary, AB Canada
  • Registered: Sat, 30 Oct 2010
  • Posts: 25

Re: alternative help??

Has anyone ever heard of GNM, German New Medicine.  My mother has heard about it through her physiotherapist and homeopath she has been seeing.  They have been educating us on this theory lately it sounds interesting but I'm not sure what to make of it?

Janet