My Search

My wife is 46 years old and has stage 4 gallbladder cancer. We have been told it is unresectable. The most aggressive surgeon I have come across is Dr. Jesus Esquivel at St. Agnes Hospital in Baltimore, MD. Here is the link: http://www.stagnes.org/cportal/general/content.asp?cid=301.


I have also contacted a Dr. Leslie Blumgart at Sloan-Kettering in New York and Doctor Nadar Hanna at the Greenbaum Center at the University of Maryland. All of these doctors reviewed my wife's records and called and talked with me.


My wife started a clinical trial but unfortunately got the older medicine, 5FU and Leucovorin. She is on her second round. On the 27th she will have a CAT scan to see how the disease has responded.

She will then start a new trial with rebeccamycin and oxaliplatin in August. Trials can be found at http://www.nci.nih.gov/.

In California, I found a company called Rational Therapeutics, www.rational-T.com. Thet test tumor samples in the lab and tell you which chemotherapies are most effective. My doctor said this doesn't work, but in desperate situations you have to try anything.

Anyone who has experience with this disease please keep responding. Even if your loved one has passed, you input and support are invaluable.

Rick

Hi Rick,
I'm in the same boat that you are in. My dear husband was diagnosed 2 months ago. They did take out the gall bladder but it had spread through the wall and into the bile duct. They couldn't do anything more. They did put a stent in place to drain the liver (before the surgery).
Two weeks ago, he got an infection and was put back in the hospital for the last week. They replaced the stent but discovered that the remaining cancer that they were unable to get has doubled in size (IN TWO MONTHS!) and has blocked the bile duct from draining the liver. The new stent will only drain about 20% which has caused his biliruben to go up to 17.9.
We were in the process of getting him into MD Anderson Cancer Center in Houston, Texas. Now, they won't take him because they can't help him unless his biliruben comes down to at least 2. And they also told me that they have NO SPECIFIC treatment for gall bladder cancer, only clinical trials.
We know nothing more to do. I'm looking for alternative treatments or treatment centers that can help. We have been opposed to chemo but now we may have to consider it. Anything that you can offer will certainly help! I don't want to lose my husband!
Debbie

Hi Rick,
I'm in the same boat that you are in. My dear husband was diagnosed 2 months ago. They did take out the gall bladder but it had spread through the wall and into the bile duct. They couldn't do anything more. They did put a stent in place to drain the liver (before the surgery).
Two weeks ago, he got an infection and was put back in the hospital for the last week. They replaced the stent but discovered that the remaining cancer that they were unable to get has doubled in size (IN TWO MONTHS!) and has blocked the bile duct from draining the liver. The new stent will only drain about 20% which has caused his biliruben to go up to 17.9.
We were in the process of getting him into MD Anderson Cancer Center in Houston, Texas. Now, they won't take him because they can't help him unless his biliruben comes down to at least 2. And they also told me that they have NO SPECIFIC treatment for gall bladder cancer, only clinical trials.
We know nothing more to do. I'm looking for alternative treatments or treatment centers that can help. We have been opposed to chemo but now we may have to consider it. Anything that you can offer will certainly help! I don't want to lose my husband!
Debbie

Dear Debbie,

My wife and I will keep you and your husband in our prayers. My research has shown that this disease is very difficult. Our oncologist told us the same thing; that gallbladder cancer has no “standard of care”.

There are several clinical trials available to our spouses. They all have criteria which must be met before the patient is accepted. I don’t know if your husband qualifies, but an oncologist should be able to tell you. You can search the trials on www.nci.hih.gov . Here is a list of clinical trials but it is not complete:

http://www.nci.nih.gov/search/ResultsClinicalTrials.aspx?pro

As far as alternative treatments go, we are using the following:
http://www.glyconutrients.myglycostore.com/go/products/GooAm The Ambrotose was recommended to us by a well known healer in Cleveland, Dr. Nemeh. You might be able to get it cheaper on Ebay.

We also use the following machines:
http://www.chimachineusa.com/hothouse.html
http://www.chimachineusa.com/chiusamenu.html

I got both on Ebay at a lower cost.

My wife is also vegetarian now and takes PDA (a dietary enzyme supplement), vitamins, iron, and Paw-Paw. You should be able to find everything at a GNC or similar store. Recently someone told us of a pancreatic cancer patient who was given three months to live, went on a macrobiotic diet and is alive 12 months later with no sign of cancer.

We have also tried to “alkalize” her through diet. I’m not so sure about this but many people swear by it. You can read about it here:
http://www.ph-ion.com/?engine=adwords !632&keyword=%28alkalize%29&match_type=

Never give up hope! Talk to as many people as you can and educate yourself on the internet. You will have to disregard all the doom and gloom, though. Keep in touch.

Rick

Hi Rick:

My father was diagnosed with stage 3 gallbladder cancer about 3 years ago. After his liver resection He was treated with Xeloda (I am not sure what the brand name in the states is. We live in Canada. The generic name is capecitabine) which is an oral medication. It is the prodrug of 5FU. He tolerated quite well and responded to it for about 18 months.

I hope that helps

Dear Rick,
Thanks for all the information. Some of it I've already put to use. I have managed to (or am doing now) make his diet as much alkaline as possible. I've read a lot of material on that (via internet). Something that I've checked into is "curcumin". My sister found reports on the trials with that done by Emory University, University of Texas, MD Anderson Cancer Center and the report was favorable. MD Anderson said that researchers have known since the early '50's that curcumin was able to prevent cancer and have also found that it responds well to TREATING cancer. I found more information from Life Extension.com and was able to purchase the curcumin (which incidentally, is a componant of the spice Turmeric) Something natural, which I believe in! Curcumin is a very effective anti-inflammatory component. Since I have Rheumatoid Arthritis, I felt that I should take it. I haven't given it to my husband yet. The company I bought it from gave me the number of the Life Extension Foundation and wanted me to call them and talk with them before giving it to Larry. There was something about the "bile duct" that they were not sure off.
I don't want to be guilty of "chasing every rabbit" that comes along but people in desperate situations do desperate things! We have a very strong faith and that has played the major role in us being able to cope with this. We still believe in healing whether it comes from Drs. or from above! I don't care!
I'll certainly keep you and your wife in my prayers too!
Debbie

My wife's can scan after two rounds of 5FU and leucovoran showed an increase in the size of the lesions on her liver. Everything seemed to hold steady.

As I mentioned before, we will start a new trial of rebeccamycin and oxaliplatin on the 29th of August. Her liver enzyme tests could disqualify her though. If that is the case, she will start gemcitabine and cisplatin.

I was disappointed but the struggle continues.

Rick

My wife had to have a stent put in her bile duct on August 5th. Her urine had turned dark and a blood test showed the bilirubin was elevated. The ALT and AST levels in her blood were 8 times normal. I feel this was from the 5FU chemotherapy.

Fortunately, by the time the clinical trial rolled around, her blood tests were back to normal. We have had two days of rebeccamycin (from a company named Exelixis), an experimental chemotherapy. We will go two more days and then one day of oxaliplatin. The cycle will be repeated in three weeks.

Unfortunaltely, my wife's disease seems to have progressed substantially in August. She has just started taking oxycondone for pain. I expected my wife to battle this disease for a couple of years but the pain and the stent have been a wake-up call. I sure pray that the chemotherapy does something positive!

Rick

Hi Rick,

My mother (48) was just recently diagnosed with the same. Via what channel were you able to get your wife's information to these doctors? Given how respected they are, how willing were they to look at the reports and respond to you?

I'm just starting down this scary path now and could use any help that I can get, so it's much appreciated.

Thanks very much.

Hello,

I wish you the best in treating your mother. Make sure you push your doctors hard for an accurate picture of your mother's disease, especially which stage the cancer is in. Many clinical trials are running throughout the country but the trials are isolated to certain cancer centers. Your doctor should be able to help you sort through them all. If the doctor is not helpful don't be afraid to change doctors. Unfortunately, gallbladder cancer is very hard to treat.

The doctors I contacted were very willing to look at my wife's case for free. I sent them all information I had via FedEx, surgery reports, CAT scans on CD, any other tests, etc. I found them all on the internet. I would be willing to send you all the contacts I have via email. My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---.

Rick