Topic: Stacie and others: a review of the treatment options

Hi everyone

I have a CT scan this week and I'm seeing my oncologist next week and I'm trying to prepare a list of treatment options to discuss (in case my Gem-Carbo chemo is not working).  At the risk of going over what for many of you is "old ground" I'd be most grateful for your comments on the following (and anything I've missed).  I've read and learned a lot on this website, and done some of my own research, what I need is to summarise the situation.

Are there any early results from clinical trials, or maybe just individual case reports, regarding the effectiveness of the drug in delaying disease progression and/or extending survival times in respect of CC or pancreatic cancer, for:

Bevacizumab (Avastin)
Approved in the US for colorectal cancer and apparently Caroline will get to receive it for CC.  I'm not aware of any trials for CC or pancreatic.  I believe the UK's Royal Marsden hospital are conducting a trial of an alternative angeogenic drug, AZ2171, which they described to me as a "2nd generation avastin".

Not sure whether this is "mainstream".  A lot of the reports about Davanat seem to come from the developer "Pro-Pharmaceuticals" and of course they have a commercial interest to promote.

XL119 (Becatecarin)
There are phase-3 clinical trials under way but as far as I know these are "blind" trials so I guess results won't be available until after the trials are completed.  Not sure whether any stage-2 trials results are available.

BAY43-9006 (Sorafenib)
The only positive reports I've seen relate to kidney cancer.

Capecitabine (Xeloda)
A chemo drug for colorectal and breast cancer.  From what I read it's no more effective that 5FU, just more convenient (it is oral) and less side effects.  Caroline reported that she tried Xeloda without any success.

The subject of much research worldwide and possibly the definitive cancer treatment of the future.  I have seen  a recently published "report of a case" from Japan where a woman with CC was treated with surgery and post-op immunotherapy and, despite lymph node metastasis, she is still alive 3.5 years later.  But I have not seen any reports of wider use of this form of treatment.

Again I'm looking for real evidence of effectiveness, which I recognise will probably not exist.

I recently met an oncologist in UK (a specialist in cancer vaccine research) who recommended the following which he said has been shown to shrink tumours:

Green Tea extract

Bromelain (an enzyme derived from pinapples)

Asprin (yes asprin!)

In addition  have seen references to:

Active Hexose Correlated Compound (AHCC) - derived from mushrooms and the subject of an informal trial in Japan.

Fermented wheat germ extract - I've just seen Stacie's post on this, and read a couple of the references, it sounds very promising.


Re: Stacie and others: a review of the treatment options


Here are my suggestions:  I'll try to go right down your list.  There are others who know more than me out there, so (others) please feel free to correct or add to what is here.

Avastin:  I think if you are doing chemo it is a must - it has boosted good  results with every kind of cancer it has been tried on.  Check pub med and you will find several studies/articles/peer-reviewed materials there that can help you.  Also, you can go to the "Getting Avastin" area on the website - there is a post there through me from a good Dr. friend and he gives several good suggestions on getting Avastin into your regimen.

Davanat:  You can't get it.  Hopefully Caroline will keep us updated on the progress with her compassionate use request, but other than that it really isn't available and there aren't any peer-reviewed articles to read on it.

Sorafenib:  I think we were all hopeful that this one would do a better job with cholangio, I haven't heard any good results from this trial - perhaps Hans knows more as he was also on the trial (which did not work for him either).

XL119 - I have not studied this drug and so I can not speak to its efficacy but pubmed should be able to help you out there as well.

Immunotherapy is just coming so we will all be watching this one.

As far as alternative therapies, I will know much more about this and the direction we will be going with Mark next week.  We have our appointment to lay everything out and we are very interested to see how this will go.  I should tell you that one of the reports that I read said that AHCC and Avemar together were having excellent results so this is something we will be going after as well.

Mark's scan was yesterday and so we are patiently waiting to hear the results.  If what they say is true and the amount of rash determines how well the Erbitux is working then he should be cancer free (haha).  We'll let you know.

5FU and Xeloda are the same thing.  Just in different forms.  Mark is on 5FU, Avastin and Erbitux right now, he is tolerating them far better than the GemOx (Gemcitabine & Oxaliplatin with Avastin) that he was doing before - so we will see.

Hope this is helpful, but I hope others will post as well.  It is always best to have many opinions.

Good Luck, keep us updated!

Re: Stacie and others: a review of the treatment options


Re:  Davanat

Did you notice that the manufacturer (Pro-Pharmaceuticals) is initiating a Ph2 trial of Davanat for cholangiocarcinoma:

This is a US-based multi-centre trial so not available to me (I'm in the UK). 


Re: Stacie and others: a review of the treatment options


I am having some luck with Xeloda!

Initially, I went off of it because of hand-foot syndrome and my feet swelling.  But on my last two blood tests, my liver enzymes have improved, so I went back on it.  My oncologist feels it's the Xeloda that made the difference.  I try not to work long days on my feet and that has helped the hand-foot syndrome.

I have a scan this week very early on Wednesday morning and then chemo (Gemzar) in the afternoon.  (I am taking the Xeloda orally.)  I don't know if or when we'll add the Avastin.  This week's scan will probably help determine that.  While the results of the scan won't be back on Wednesday afternoon, Dr. Bergen said he's going to run upstairs to the imaging center and find a radiologist who will at least give him a preliminary report on my scan. 

I'm not expecting good news.  Everytime I get a scan, my tumors have grown back, or doubled, or more have grown.  But hopefully, they will have slowed down a bit.  This is my first scan since chemo.  My last scan was about three months ago when I was on the trial for Sorafenib.

As for Davanat, the people who have contacted me and made some posts on this site are shareholders in the company and not the company itself.  I am keeping the possibility of compassionate use of Davanat on the back burner.  The Phase II clinical trial probably just opened, but they're looking for people who have never been on chemo.  Had I not been on chemo, I would consider this trial.   But after I went off the Sorafenib trial, I just felt like I couldn't wait three months to have a new treatment. 

The two shareholders of Pro-Pharmaceutical (makers of Davanat) who contacted me had family members who had cancer.  Tom's mother had colon cancer and he tried to get her into the Phase I Davant trial, but she died before they could get her in.  He also had an aunt that died of CC several years ago.  I think his motives were genuine - he just wanted to let people know about the drug that he felt might have saved his mother.  He bought stock in the company as a result of the research he had done to help his mother.  My doctor and I had both called Pro-Pharmaceuticals about the trial, but the doctor in charge of the trial said I wasn't eligible.  Tom called the doctor on my behalf as well, but was informed of the same thing - since I was on chemo, I wasn't eligible.  The clinical trial doctor said he felt it was better to stick with Gemzar and other traditional treatments with a proven track record rather than an experimental drug.  He also mentioned that at the big oncology conference this summer in the US it was reported that Gemzar is showing better results than previously thought.

Hope this helps,

Re: Stacie and others: a review of the treatment options


Good luck with the scan, it's a very stressful time waiting for scan results isn't it.  Lets hope that your GemCap combo is working, please keep us informed.  Also we'll be very interested to hear whether your oncologist decides to add Avastin.
Regarding Davanat, I recently spoke with Pro-Pharmaceuticals and they confirmed what you said ie the Ph2 CC trial would not accept patients who already had chemo.  But I got the impression that in some months time this restriction may be lifted.  It's one to watch.

Best wishes


PS just had the results of my latest scan which shows my LN metastatic tumours are stable, I'm therefore continuing on my GemCarbo regime.  I guess that I'd rather have shrinkage but I'm happy to settle for stable - I'd been told at the start that based on previous results the chemo would have around 30% chance of success. so I was particularly nervous whether I'd be in that 30%.

Re: Stacie and others: a review of the treatment options

Dear Geoff-

Glad to hear your good news about your scan! 

It is stressful waiting to get results.  I don't seem to be landing in the good percentages with all of this, but maybe I'll have better luck tomorrow.  I have also heard 35% is the success rate, but I've heard some news that it is improving.

I am bracing myself for bad news.  I always go to the mall and buy shoes if that 's the case.  Most of the time I buy Crocs.  I have six pair now in assorted colors.  I still want yellow, red, and lime green.

I don't know why, but I got the same impression about the Davanat trial as you did - that after a while, they may take people who have been on chemo.  They may not get that many CC patients unless they lift the restriction.

We may get home very late tomorrow, but I'll try to post my results as soon as possible.


Re: Stacie and others: a review of the treatment options

Good luck tomorrow. I will be thinking of you and hoping for the best. You always seem to have such an up-beat approach to things that if feeling positive can help you will be fortunate.
Geoff, glad to hear that things are at least stable, maybe with the additionaL treatment the next scan will show some shrinkage. Best wishes to you and your daughter.

8 (edited by Caroline Stoufer Fri, 11 Aug 2006 00:40:20)

Re: Stacie and others: a review of the treatment options

Hi Everyone!

Good news on Wednesday.  My blood work continues to look good and while my scan results were mixed, most of my tumors are stable.  The ones that have grown haven't grown that much, so we are very encouraged.  The oncologist feels it's the Xeloda that's really making the difference.  Additionally, I am no longer anemic.  I've added red meat back to my diet and I had a big steak dinner on Tuesday night, so I don't know if that helped or not.

I did also have my Gemzar infusion on Wednesday as well.  We have decided to have a port installed next week which will access a vein near the collarbone for blood draws and chemo.  We won't start the Avastin until the port has been in a week or two and the risk of infection  for the port insertion is over.  The chemo drugs slow the healing process, and the Avastin would further complicate this, so Dr. Bergen doesn't want to add Avastin right away.

My hand-foot syndrome has really flared up today.  My feet are red, sore, hot, and peeling.  So I'm going to suspend the Xeloda for two or three days.

All for now.  It's late and I must get to bed.


Re: Stacie and others: a review of the treatment options

Hi Caroline

Excellent news re your stable tumors. Good to hear that the Gemzar + Xeloda combo seems to be working.  I think I mentioned before that here in the UK this combo is referred to as GemCap and a recent trial for patients with advanced pancreatic cancer showed the combo to be more effective than Gemzar alone.

Best wishes


Re: Stacie and others: a review of the treatment options

I was in the XL119 phase 3 clinical study and dropped out because I was assigned to the control group rather than the XL119.
However, I just learned that the study is being changed to open status, and that all participants will get XL119.
This sounds like very good news.

Re: Stacie and others: a review of the treatment options


That is great news.  Please let us know how things go on the trial.


Re: Stacie and others: a review of the treatment options

Hi Woody

My husband is on the ABCo2 trial at the moment and drew just the gemcitabine the last scan showed stable disease ,but no shrinkage . He has 2more treatments in thsi trial .we are now thinking ahead .and I was wondering where the XL119 study is taking place and if it is open to people who have had chemo already ? as we understand some trials are not . he also will havea 2nd surgical opinion with Proff Lodge after the Gemcitabine has finished


13 (edited by ukmember Wed, 23 Aug 2006 01:59:52)

Re: Stacie and others: a review of the treatment options

The details for the XL119 trial in the UK can be found on this discussion boards in  is in Clinical Trials,  XL119   with names and contact details.
Good luck

14 (edited by Caroline Stoufer Wed, 23 Aug 2006 22:15:09)

Re: Stacie and others: a review of the treatment options

If you read the Johnson Family blog, you'll find that he did XL119 in 2005.  Go to the January 2006 archive on their blog and they have a summary of his treatments.  I think he was on it last summer.

The Johnsons haven't posted for a while.  Does anyone know how Sam and his wife are doing?


Re: Stacie and others: a review of the treatment options

Hello Caroline - For some reason I cannot post to our blog.  As you probably do not know, Sam lost his battle on August 10th at 6:05 p.m.  I wanted to put the picture of the sunset that occurred when Sam died but just cannot get anything to work.  I am absolutely lost without him and just sort of walk around in a daze; there is just no way to describe how much I miss him. 
Sam's service was very touching.  Two of his best friends gave the euolgy - one spoke about his integrity and how many lives he touched; the other talked about how competitive he was.   The First United Methodist Church of Demopolis is a very large church; it was packed with people standing in the back and around the sides.  He would have been very touched.  I am going to try and post to a new blog and hopefully Rick will be able to add it after I post.  It will be the Sam Johnson Family.
My prayers are still with all of you.

Re: Stacie and others: a review of the treatment options

Betty, I had a little trouble this morning myself posting on our cholangio blog.  The link is now up and working.

Re: Stacie and others: a review of the treatment options

For the phase 3 XL119 study, you had to be treatment free for 6 months, plus additional criteria.  The study is detailed at … 25?order=1
If they are opening the XL119 to all participants (as I was told), they may also change the eligibiity requirements.
I will post any information I learn.

I am trying to develop a comprehensive data base of treatments and individual responses.  If you are willing to share your experiences, please email me at
woodyb  @
and I will forward the suvey form and send you periodic updates of everything I learn.
Woody Beckman

Re: Stacie and others: a review of the treatment options


I am heart-broken to hear about Sam.  His service sounds wonderful.  Please let us know if there is anything we can do.  Our thoughts are with you.

-Caroline Stoufer

Some news on AZD2171, the new Avastin.  It is offered through AstraZeneca.  I have a cousin in Florida who is a sales rep for AstraZeneca and I just e-mailed her to see if she could get us more info on it.  Looks like the trial in England is the only one open to CC patients unless the liver trial will take a cc patient.  My oncologist is interested in getting me on the trial before I start Avastin.  I don't mind travelling to England to get enrolled.  I wonder if they would let me do follow ups in America or if they would accept Americans.  Sure would love to see Londaon, Liverpool (I'm a huge Beatles fan), and the James Herriot country, Scotland, the Cliffs of Dover.  Actually, I've wanted to go to England for some time , more than anywhere else.  This may be my chance.  Will let you know what I find out.

Re: Stacie and others: a review of the treatment options

Darthmouth Hitchcock, our local cancer center, is participating in the Phase III trial that Woody mentions and is one I am considering.  I have not heard that all participants will be opened for XL119 but, if true, that's great news.
Currently eligibility requirements include specific ratios on liver enzymes.  AlkPhos is 2.5 times the norm and I'm just out of range.

Re: Stacie and others: a review of the treatment options

Just a note about Avastin.  I'm seeing an oncologist in Boston, and I haven't yet begun treatment for gallbladder cancer, but he has proposed a clinical trial out of Dana Farber in Boston involving Avastin, oxaliplatin and gemcitibine.  I would think that Dana Farber Cancer Center would have more information; I think the trial is just in NE for bile duct and gallbladder cancer patients.

Re: Stacie and others: a review of the treatment options

Who is your Boston oncologist? 
I live in VT but will be seeing Dr. Keith Stuart in Boston next week as he has experience working with BDC patients.  He's currently at BI but moving to the Lahey clinic soon.  I'm interested in the trial you mention.

Re: Stacie and others: a review of the treatment options

Hi Lynne and Peter -

My brother is on that clinical trial that you're speaking of at Dana Farber.  (For what it's worth, it's also at MGH if you know someone there).  Chris has been seeing Dr. Jeff Meyerhardt in the GI oncology group at DF, who has been very compassionate through the entire process.  He also apparently is doing something right as Chris just had a 23.8% (but who's counting?!) reduction in his tumors.  Unfortunately, because Chris is so young (25), no one is really that up front about where his tumors are, how large they are, and how much they need to shrink before he will become a surgical candidate.  I suspect that Dr. Meyerhardt will be much more up front with you if you want him to be (it just seems that no one in my family really wants to hear the whole story and I am not in a position to pry).  Anyway, feel free to contact me at if you'd like more information on Dr. Meyerhardt, Dana Farber or the trial.  I will help out to the best of my ability.

- Melissa