Need advice in N California

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Need advice in N California

by sophieuma on Mon Oct 19, 2009 12:00 AM

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My 41 y.o nonsmoking husband had terrible reflux, wt loss and abdominal pain  all this summer  and after many many visits to the primary doctor and gastroenterologists and no improvement with treatment for reflux, finally ended up in the Emergency Dept for the ongoing pain and had a CT 3months into this,  which shows 8cm mass in pancreas and metastatic disease to liver and celiac plexis lymph nodes. Stage 4. inoperable.

He is in small community hospital right now. where they offer standard Gemcitabine/Tarciva and 1 clinical trial with Gemcitabine +Kanglaite. we're trying to decide for 2nd opinion.

 Any thoughts re: UCSF vs. Stanford vs. CPMC.

and Any thoughts regarding Kanglaite?

Any help would be appreciated.

RE: Need advice in N California

by Waldo1 on Wed Oct 21, 2009 12:00 AM

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I'm so sorry that you are both going through this...Just wanted to send you a quick note - We are from Chico - (my husband is 53) We had appointments scheduled for both UCSF and Stanford and decided to go to UCSF (Dr. Andrew Ko) where John got in a clinical trial open to Stage IV Bilary and Pancreatic patients - John had Stage IV Ampullary Cancer (invading the pancreas and mets to the liver - CA19-9 of 2,108 - currently at 16!) and is now in complete remission (finished treatment in Aug 08) - Can't say enough about UCSF and Dr. Ko and staff - We were told by a local oncologist that John would not make it a year and that there was no hope without surgery - John did Gemzar & high dose Xeloda every other week and had a remarkable outcome!  I would say RUN to UCSF as quick as you can - do not start any Chemo yet as it may make him inelidgible for a trial.....We have COMPLETE faith in Dr. Ko and this facility

God bless you both....Tracie

RE: Need advice in N California

by sukibabee on Wed Oct 21, 2009 12:00 AM

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As you probably know, Pancreatic cancer is about the worst you can get, and it does not respond well to chemotherapy.  Only a handful of cancers respond well to chemo.  Most cancers, once metastatic are considered a terminal disease.

I would absolutely strongly advise against involvement in a clinical trial.  Before doing so, I would purchase a Moss report (http://www.cancerdecisions.com ) on pancreatic cancer, and read what it says about your chemo options and about clinical trials.  It will shock you.

I extensively research cancer treatments for months.  I strongly suggest you check out Dr Nicholas Gonzalez in New York.  His website is http://www.dr-gonzalez.com.  He is also appearing on Larry King live, broadcasting this Friday (Oct 23, 2009), which you will be able to view online at http://www.cnn.com/CNN/Programs/larry.king.live/.

I extensively researched him.  I even tracked down some of his current patients and contacted them.  Once is a stage III pancreatic cancer survivor (diagnosed 2001), and another was stage IIIb colon cancer (1992) --- both extremely serious diseases.  Dr Gonzalez has many pancreatic cancer survivors.

Unfortunately, Dr Gonzalez is easy to dismiss because his program is difficult to summarize to the lay person.  There is not only a lot of science, medicine, studies and history to understand, there are a lot of political forces at play as well.  Dr Gonzalez has tried very hard to get his work accepted by orthodox medicine, and started a NCI-NIH clinical trial in 1998 of pancreatic cancer patients that more recently dissolved due to what appears to be deliberate attempts to undermine his study.  This is documented on his website.

While Dr Gonzalez has a lot of support from large institutions and prominent people, he has always been under attack as any CAM (Complementay and Alternative Medicine) practitioner has been.

I have personally met Dr Gonzalez and found him to be the most detailed, compassionate and knowledgeable doctor of all I have met.  He is also an extremely intelligent man who has devoted his life to treating cancer patients for over 20 years. He is the world's leading expert on the Trophoblast theory of cancer and Enzyme therapy, and he gets excellent results.  His program is very difficult to follow, but is not toxic.  Talk to people who have been through abdominal radiation and chemotherapy and you will quickly learn it is much worse than doctors tell you.

I have a lot more information about Dr Gonzalez and other cancer treatments, and I am happy to share these with you.  Send me a private message with your email if you wish.  I wish you the best.

RE: Need advice in N California

by sukibabee on Wed Oct 21, 2009 12:00 AM

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other thoughts:

regarding UCSF vs Standford vs CPMC -- there is no answer.  Your experience will very much depend on the people you deal with.  Tell someone "I'm being treated at Stanford" and you may hear a "wow" response ... being that Stanford is rated as a prominent cancer treatment center.  But a friend of mine has a very different view on that, after a few years of being treated at Stanford.  She had many stories.  One of the things she told me --- a few times she was hospitalized for absolutely terrible side effects from radiation and chemo, and she said her doctors "would come out of the woodworks".  She had doctors for everything, and they would all do their rounds while she was drugged in the hospital bed.  How they all even knew she was there beat her.  What was her dermatologist doing checking on her when she was admitted for nausea and other non-skin complaints?  Answer: To get the commission.  It made her angry.  Oncologists make money on the marking-up and administering of chemo.  Did you know an oncologist can make $150K or more a year through that alone.  She discovered this for herself.  She was in love with one or two of her doctors, but just because you go to a prominent or expensive facility, it doesn't mean you will be immune to these types of things.

Regarding clinical studies, you should know that something in the order of 19 out of 20 studies fail.  Drug companies spend millions on developing a drug and have a massive financial interest in getting it to the public.  Before doing so, they must run it through clinical studies on patients such as your husband.  Often a drug that shows promise in theory and even in animal studies has very poor results in practice on humans and often with extreme side effects.  A failed drug is often combined with another drug, one that has passed it's patented lifespan.  I have seen dozens of reports on highly toxic, multi-agent chemotherapy trials that went nowhere and wound up killing some of the trial patients due to toxicity.  There is also fierce competition for clinical trial participants, and many doctors are paid a commission to enroll patients.  This is well documented in Ralph Moss's moss reports, which I highly recommend.

On your specific query of Gemzar+Tarceva vs Gemzar+Kanglaite, I cannot answer.  Multi-agent chemotherapy involving gemzar + <something> is common for pancreatic cancer ... the reason being that pancreatic cancer is a particularly aggressive cancer that responds very poorly to chemo.  It is incredibly unlikely that your husband will get involved in a clinical trial on the brink of a new discovery. They have been developing and trying chemo drugs for, what 40+ years.  There are very very few successes in that time.

Have you asked your oncologist why Pancreatic cancer is so aggressive?  I'm sure they cannot give you a good answer.  I've got one.  Of course, anything read on the internet, especially on a forum by a well intentioned individual should be taken with a really large grain of salt .. to the point of almost complete dismissal.  So please do so, and do your OWN research.  In any case, my answer is ...

the primary purpose of the pancreas is to produce proteolytic enzymes that are dumped into the small intestine to break down foods. A diseased pancreas (assuming it is diseased in the enzyme production part of the pancreas) is obviously not going to produce enzymes as well as it normally would.  So what is left is an excellent environment for cancer to flourish, if you believe in the Trophoblast theory of cancer:

The similarity between trophoblast cells and cancer is only recently widely accepted in the cancer research world.  This was discovered and that work almost lost some 100 years ago by Dr John Beard who found that pancreatic enzymes were the key to controlling placental growth (trophoblast cells), postulated the similarities to cancer and found with clinical experience that enzymes also controlled cancer.  Injectable pancreatic enzymes were used at the time.  Since the 1970s or so, studies have proven that enzymes taken orally survive acids of the stomach and unused enzymes are absorbed by the small intestine and recycled back via the blood stream into the pancreas in a similar way bile salts are.

So one answer why pancreatic cancer is so deadly, is that that particular disease limits pancreatic enzyme production, which is a natural cancer controller.  Nothing in medicine is this simple of course.

Another interesting fact is that most cancers will elevate HCG levels in people.  HCG is a hormone that is elevated during pregnancy, and is the hormone detected by the common OTC prenancy test.  Google HCG and testicular cancer, and you may be shocked to know that men with testicular cancer can pee on one of these pregnancy test kits and register positive.  We tried this with our family relative who has lung cancer, and to our shock at the time, the result was positive.  It is reported that most OTC tests are not sensitive enough to detect levels in many cancer patients, though some doctors do use this blood marker in cancer testing.

So why is this?  Well .. trophoblast cells (which invade tissue (the uteral wall etc), form blood supplies (angiogenesis) and proliferate happen to produce HCG.  That's why it's a pregnancy test.  And gee... cancer, which invades other tissues, forms blood supplies and proleferates also produces HCG.  Hmm.  Of course, again I am simplifying, but this is just another well known fact - that supports the trophoblast theory of cancer.

Look into it.  If you need help (I have some good stuff on it), send me a private message.

RE: Need advice in N California

by sukibabee on Wed Oct 21, 2009 12:00 AM

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Regarding Dr Gonzalez on Larry King live ... the story is actually listed as Medical Nightmare! .. an interview with Suzanna Somers (that includes Dr Gonzalez and others).  Look for it here (after Friday, Oct 23, 2009):

http://www.cnn.com/CNN/Programs/larry.king.live/

RE: Need advice in N California

by sophieuma on Tue Nov 03, 2009 10:28 AM

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thank you for you advice. Somehow I didn't log on properly and am just now reading it 11/2. a week and a half later. we've just returned home after being at Stanford a week for procedures for pain (celiac plexus block). but decided not to stay w/ Stanford for chemo: offered clinical trial: Gemzar/Tarceva/experimental monoclonocal ab.

We saw our local oncologist with thought that quality of life was important instead of driving so far and are about to start clinical trial w/ Gemzar and chinese herbal drub: Kanglaite. 

However I have learned alot in last week . Have heard that XELODA can have bad side effects. Is this true? How was it for your husband?

Now I am thinking we aren't being aggressive enough. 

we hadn't set anything up with UCSF but I do have some connections. 

 

RE: Need advice in N California

by Waldo1 on Wed Nov 04, 2009 08:50 PM

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We were very lucky - John did not have many complications....He never had Hand and Foot syndrome, he never lost his hair or got any sores in his mouth, throat, etc..  He would get an infusion of Gemzar, then take 4,000 of Xeloda for seven days then was off for seven days...He did this for eleven treatments......He did feel fatigue on days 3 & 4, had some constipation and felt very nauseous during the first couple treatments, until he started to take Zofran (THE WONDER DRUG!!) which stopped all his nausea.  He did well enough that he was able to keep up with his lecture schedule – I traveled with him to help out with the bags, getting his meals, etc.. so he could rest.

It is a difficult decision to make when figuring out which treatment is best – I know what you are going through….It is an aggressive, heinous disease and needs aggressive treatment…..   We, too, were advised locally to start Gemzar as palliative treatment and go for quality rather than quantity - John was feeling sooo sick when he started (we were fortunate that he never had any pain, but like your husband, he had horrible nausea that we mistook for acid-reflux, jaundice and terribly itchy skin..) it would have been easier to do this locally……..The scariest thing was that he had started to lose weight rapidly and was visually slowing down – he was definitely on his way out!  Driving to Frisco and back every other Wednesday was not easy, (three to four hours there, and then back again..)  but looking back it is a bit like childbirth – you don’t think you will ever be able to get through it at the time, but you do…… We were very fortunate and thank God every day that John is still here with us with no sign of disease…..

I am not familiar with Kangalaite, I’m not sure what type of results they are getting….There are so many new regimes out there – I would say research as much as you can - But the disease does move quickly so keep that in mind as well….

I had also sent John’s info to MD Anderson – They reviewed his files and when they called I told them which trial John had started on and they thought this treatment was good and told us that if we were not successful that they would have other options for him….at this point all I can tell you is that we are BIG believers in Xeloda…

Please contact me at any time if I can be of help –

God Bless you both,

Tracie

 

 

 

 

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