• Registered: Thu, 07 Jan 2010
  • Posts: 113

Topic: Looking for a specialist in California for cholangiocarcinoma

I was diagnosed with bile duct cancer in July, '09 and they said I could not have surgery so chemo and radiation were my only options.  I have a mesh wall stent in one of the ducts.  I have had 6 weeks of chemo (gemzar) and radiation.  The CT scan showed that it has not shrunk nor has it grown.  While I was taking the treatments, my CA-19 got as high as 5800 and then started coming down a little.  The last blood test showed the CA-19 was down to 2000.  I hope it wasn't a mistake.  It is still very high but lower than when I started the treatments.  Now, it is time to have more chemo and I am hoping to find a doctor that is more familiar with the bile duct cancer than the one I have been going to.   If you can help me find a specialist, I would appreciate it.  I have sent my records to Dr. Venook who is at UCSF but I do not know anything about him except what is on the internet.  I have asked for an appointment but they haven't given me one, yet.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: Looking for a specialist in California for cholangiocarcinoma

Hi Rowena, I had posted on another note to you that I understand there is a Dr. Lenz that several of our "Family" uses. He is supposed to be the best. I am not sure where he is located, I think the Los Angeles area. If you use our search button at the top and type in Lenz you will find posts on him.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Thu, 07 Jan 2010
  • Posts: 113

Re: Looking for a specialist in California for cholangiocarcinoma

Lainy,
I did fax my papers to Dr. Hans Lentz at USC but he does the stem cell transplant and since my cancer is inoperatable this was not an option for me.  Thank you.  Thank you for telling me about the "search button" and I will try it.  I am so glad that I found this site.  I just wish I had found it sooner.

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Looking for a specialist in California for cholangiocarcinoma

rowena...Dr. Lentz has treated many of our members.  He is an oncologist who has treated many bile duct cancer patients and he is highly respected.  The search function, on top of the page, middle, and the Google search, right hand side will lead you to the numerous postings regarding Dr. Lenz.  Simply, enter "Dr. Lenz".  Good luck.
Best,
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
  • Registered: Thu, 07 Jan 2010
  • Posts: 113

Re: Looking for a specialist in California for cholangiocarcinoma

Marion,
I think I must have gotten my notes crossed.  It looks like I conacted Dr. Lenz about stem cell transplant.  It was when I was trying to find another treatment besides chemo and radiation and before I found this site.  I have learned so much from all of you.  I am sorry I did not know about this website months ago.

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Looking for a specialist in California for cholangiocarcinoma

Rowena.....the diagnoses of this disease has a way of confusing anyone.  There is so much information to gather and so very much to digest.  I am impressed with your abilitiy of handling everything as well as you do.  Please, don't forget to take a little break and remember to nurture your soul.
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
  • Registered: Thu, 07 Jan 2010
  • Posts: 113

Re: Looking for a specialist in California for cholangiocarcinoma

Since I was last on this board, I have called Dr. Venook's office and Dr. Lenz's office for appointments.  I thought I would take the first one I could get.  I got an appointment with a new doctor that takes Dr. Venook's "over-flow" with the understanding that I could see Dr. Venook later if I was not satisfied.  I saw Dr. Robin Kelley who had just finished four years doing a fellowship at UCSF and was offered a residency.  Even though, she does not have the experience, she is in the right department which only sees patients with gastrointestional cancer.  For now, I am on what you might call "hold".  Hold until my next blood test or until I have some unforeseen symptoms.  At that time, I will have another CT scan, and if the cancer has grown, then it will be more chemo.  I went to see a Natural Health Care doctor (ND).  I am going to see if she can help me naturaly with vitamins and diet.  Are any of you on a special diet?  I am willing to try anything that would keep the cancer from growing.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: Looking for a specialist in California for cholangiocarcinoma

Rowena, this is very good news. When we find that oane doctor we connect with and have a plan it all seems to just fall in place and we relax a little.
As for vitamins the doctors all have said to go on 5,000mg of D, not as a cure but it is supposed to help fight. My daughter's friend was DX with Lymphoma and he has been going to a Naturopathic doctor along with his Oncologist and he takes intravenous doses of Vitamin C and has been in remission for 3 years now. One other thing, I just picked up the book, Anti Cancer as I had seen it on here many times. Its a wonderful book with a lot of nutrition points in it. WE are so happy you found THE doctor!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Looking for a specialist in California for cholangiocarcinoma

Rowena....Marylloyd had posted frequently regarding the supplements she feels have been beneficial to her husband.  You may also use the search functions by entering nutrition or supplements which will lead you to several, previous discussions  Also, the Nutrition category has several postings regarding this subject.  Kristin also had contemplated sharing some of what she has learned and feels has been beneficial to her.  Kristin? 
I am glad that you brought this up because; I think that this is a subject all of us could learn more of. 
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
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: Looking for a specialist in California for cholangiocarcinoma

Hi Rowena,

I am glad that you have found a doctor that you are happy with and I hope that the ND can offer some good advice on nutrition and diet for you.  I hope everything goes well for you.

Best wishes,

Gavin

  • Registered: Thu, 07 Jan 2010
  • Posts: 113

Re: Looking for a specialist in California for cholangiocarcinoma

Thank you , All, for your best wishes and encouragement.  Lainy, you are right, the book Anti-Cancer is a great book.  I bought it a few months ago and skimmed through it, but now that I have more time, I have been taking a second look at it.  I am going to follow a diet of the foods that he recommends.  Marions, I was reading on another site and ran across Kristin's post on the supplements.  I noticed that she is taking milk thistle which I have read is good for liver cancer, and she is having a green drink every morning.  I am having a green drink every morning that has milk thistle in it but maybe I should take more of it.  The ND I went to told me to have two green drinks a day but I am wondering if that would be too much, so I am still just having the one a day for now.   I will use the search function to find more. 
Everyone has been so helpful.  As I said before and I'll say it, again.   I am so grateful that I found this site.
I am wishing you each, the best.
Rowena

  • From: Berea, KY
  • Registered: Sat, 02 Feb 2008
  • Posts: 318

Re: Looking for a specialist in California for cholangiocarcinoma

Hi Rowena,

I'm glad my post was helpful. I don't think two green drinks a day can possibly hurt you, since they're just made out of concentrated vegetables. I FINALLY found one that tastes pretty good-- Macro Greens (the company is MacroLife.) And there seems to be pretty general agreement that milk thistle strengthens your liver.

Wishing you all the best--

Kristin

Peace, hope, and healing to all!
  • Registered: Thu, 07 Jan 2010
  • Posts: 113

Re: Looking for a specialist in California for cholangiocarcinoma

Thank you, Kristin.  I will start drinking the two drinks a day.  I have been on Emerald Balance for a month and then I have just purchased Greens First for it had more milk thistle (75 mg) in it.  They taste pretty good.  I haven't seen Macro Greens around here but I will look for it.  I have just purchased some turmeric and will use it daily.  I asked the ND about Essaic tea and she said for me to stick with the greeen tea for now. 

Best wishes to you all.
Rowena