Topic: Want to start supplements.

But I don't know where to start. I takeing d3 right now. What others can I take? I'm so confused when it comes to this.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Want to start supplements.

Hi Tiff,

I started reading about supplements when my wife got diagnosed. It's been more than a year. Let me tell you... my head is spinning. For any given supplement, a can find a few medical studies that directly contradict each other. One study says that a supplement is safe and that it shows some anticancer activity. Another study says that the supplement is not safe or that it's doesn't have any anticancer benefits.

I have about a gazillion bookmarks on supplements, but this is the best resource by far:

Memorial Sloan-Kettering web site About Herbs, Botanicals & Other Products
http://www.mskcc.org/cancer-care/integr … bout-herbs

Each supplement has its own page with two tabs: one for Healthcare Professional, another one for Consumer. For example, here's the page on Vitamin D:

http://i.imgur.com/GRaDW.jpg

Consumer tab is the one you want to read. Healthcare Professional tab has a lot more details, but the medical mumbo-jumbo can be a bit of a challenge to wade through.

Finally, my advice to you: tread very carefully. Talk to Dr.Javle or ask questions here before you start taking any new supplements.

Re: Want to start supplements.

Tiff,

For what it's worth, I would not take any kind of supplement without asking your doctor if it is ok. They could affect you in a negative way. I know some people suggested different herbs and things for Lauren, saying they would shrink tumors and other things. We asked Dr. Zalupski about this and he said to absolutely Not take anything. He said they could react badly and make her worse. He also said it would ruin the data for her clinical trial. So I would say don't do it unless you ask Dr. Javle first. He knows best.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

4 (edited by PCL1029 Sat, 30 Jun 2012 12:35:59)

Re: Want to start supplements.

Hi,
To be truthful, other than patients that are in the clinical trials, complimentary and alternative treatment (CAM) is not a bad idea. The problem lies on knowing what and which to use  to provide the desired benefit?
I sincerely believe even  doctors are not sure about what to use in CAM due to the vast choices and the busy schedules for all the doctors. and that is why most of them do not recommend Herbals or supplements.
I think they will prefer to spend more time ,if they have ,to up date their knowledge of their own field besides see patients, attending their own institutional medical and administrative meetings;doing research and attend medical conventions. Don't you think so?

It is not the doctors' fault,but think about in this way; would you like the specialists ,like oncologists or liver specialist ,to concentrate  more  on their own fields rather than become a "jack of all trades"?

That responsibility ,if you choose CAM, should lies on the patients as well as the caregivers and their personal belief of using it rather than venture out of the current western medical domain.

but if you want to do so, which about 90% of the patients and caregivers will do so according to a study; University of Pittsburgh and  Sloan-Kettering are two good places to start. our own web site under the experience forum of CAM is another source for it.

http://www.cholangiocarcinoma.org/punbb … hp?id=5931


http://www.cancer.net/patient/All+About … e+Medicine

http://www.cholangiocarcinoma.org/punbb … hp?id=6273

For me, CAM is difficult to find experienced practitioners to  provide good results besides minimal benefits. and I do not think FDA, in the near future will attempt to provide additional guide lines besides classified them,such as for the herbal medicines, as food items.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Want to start supplements.

Tiffany,

I have talked to my oncologist several times about supplements/alternative treatments.   She does not recommend any but is not opposed to me looking into it.  The only thing she was against, is taking supplements the day of chemotherapy and taking high does antioxidants while on chemotherapy.  I also went to Mayo and they basically agreed with this.
I should mention I live in Portland, Oregon.  It is extremely popular to be involved in natural therapy here, so I'm sure that has something to do with my oncologist's open mindedness and laid back attitude towards natural medicine.  She did recommend a naturopath that I saw today.  I will post the results separately. One thing she said, was if natural medicine is something I want to consider, she thinks this is the best time to do it, when I am not receiving treatment and am trying to recover from treatment.
My advice is, I would not take ANYTHING without running it past your oncologist.
Also, I would not go start taking lots of different supplements unsupervised based on things you read on the internet and recommendations of friends/family.  I don't know about you, but since my diagnosis, I have gotten bombarded by people telling me to take this/avoid that etc.  I think if you are going to go the natural route, I would really recommend seeing a naturopath and getting some professional advice.  My consult was $200 and was about 90minutes.
The other thing to consider is I'm off all treatment and recovering from chemo and radiation. I personally wasn't willing to risk taking anything not prescribed by my oncologist during active treatment because I had just had part of my liver removed, was getting active treatment and you just don't know how supplements interact with treatment.
One other thing to mention, if you remember, I used to be a nurse in the liver transplant ICU.  It's not common, and I have no idea what other factors were involved, but I have seen people have significant liver damage which was blamed on herbal remedies.  Like I said, I have no idea if that was the true cause, but it was enough to make me think twice about what I put in my body.
Be well and let us know what you decide!

Susie

Re: Want to start supplements.

Hi Tiffany, my husband has gotten approval from his dr. On these: baby aspirin 1x day to reduce inflammation, fish oil to maintain weight (I think), ginger capsules for nausea, and ginseng for energy. His family keeps pushing him to take alkiline drops, but dr says they wont do anything. Instead, he juices whole lemons and pineapple cores to reduce alkilinity and inflammation. He also eats lots of broccoli. I think juicing fruits and vegetables makes him feel the best...how can a bright green drink not translate into good health? We love our juicer. Hope this helps!

Re: Want to start supplements.

Hi,
This is from the Chicago Tribune  discuss about the safety of dietary supplements.


http://www.chicagotribune.com/health/ct … ?dssReturn

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Want to start supplements.

Additional link to Percy's posting:

http://www.chicagotribune.com/health/ct … 3524.story

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