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Date: Sat, 3 Oct 1998 12:57:52
Subject: Re: liver mets
Mary,
The development of liver mets (assuming this is what the five liver spots are) while undergoing "pre-op" chemotherapy for adenocarcinoma would be regarded by most oncologists as indicating that the disease process was not being adequately controlled. I find it hard to imagine too many who would recommend that Mike proceed with surgery in an attempt to cure the disease in light of this development. I also think that most would modify the chemotherapy being used assuming that the cancer was not being adequately treated with the present regime. There are a wide variety of agents that might be added to his chemotherapy regime. Some might even recommend an entirely new combination of chemotherapy drugs. Using a single chemotherapy agent at this point in time would not likely be regarded as the best choice since the resistance of the tumor has been demonstrated. Most oncologists feel that multiple agents are more likely to overcome resistance. There is no "standard" or "proven" combination of anti-cancer drugs that "should" be used in this situation. In fact, Mike might well want to try some "unproven" approach to his disease and enroll in a clinical trial of an experimenal drug or drug combination. He might also want to opt out of additional anti-cancer treatment entirely, i.e. be given comprehensive supportive care only and see how much living with his cancer he can manage to do.
In terms of Mike's prognosis, it would be hard to imagine a worse development. There are few long-term survivors of Stage IV disease. It could be pointed out that there are a fair number of us Stage IV people who have managed to have quite wonderful and quite prolonged "last chapters" myself included.
bill bartholome
Date: Sun, 4 Oct 1998 13:10:39
Subject: Re: Jackie's Dad's "port" and Liz re Marge
Jackie,
Your dad's cath and angio procedure do NOT mean that he should or cannot have a "port." A port is nothing more or less than a way to have access to the blood stream without having to place a catheter in a vein every time such access is needed. People who are on continuous infusions of anticancer drugs must have a port of some kind. People who are getting multiple agents fairly frequently (and who need access to the blood stream regularly for blood tests) also ususally benefit from the ports. If you are extremely obsessive and protective of a port, they are few side effects and risks other than failure, i.e. clotting and needing to be replaced. The most serious complications are formation of blood clots and infections of the catheter.
Liz,
Like all of us who have had our stomachs appropriated into our chests to replace the esophagus, there is a gradual stretching of the stomach to allow for greater and greater amounts of food to be eaten at one sitting. However, few of us are able to eat whole meals even years after surgery. We continue to eat constantly and to eat half meals 5 to 6 times a day.
bill bartholome
Date: Wed, 7 Oct 1998 09:25:02
Subject: Laurie & hydrazine sulfate
Laurie,
Sorry I didn't respond to your question. Seems like we have to deal with this question every few weeks. We may need to put something re this drug on our Web site or under a "Frequently Asked Questions" section.
There is NO evidence that hydrazine sulfate has any anti-cancer activity. In fact, there is some evidence that there are risks associated with taking it. Would strongly suggest your NOT using this agent
bill bartholome
Date: Thu, 8 Oct 1998 12:56:36
Subject: Re: treatment of liver mets; response to Alice's "confusion"
It is important that we don't let this discussion on the subject of the use of cryosurgical (cold) or microwave (heat) probes for treatment of inoperable liver mets mislead those on this list who are dealing with spread of EC to to the liver. It is imperative that it be understood that there is NO evidence that use of these techniques results in permantly ridding the liver of metastatic tumors; NO evidence that they can "cure" patients with metastatic cancer whose only obvious involvement is growths in the liver. Both procedures are highly experimental. And, consent forms for both procedures clearly specify that these techniques should be thought of as part of the "palliative" care of persons with metastatic lesions to the liver, i.e. that the techniques are nothing more or less than measures to help people with liver tumors live more comfortably with those tumors; they help relieve the symptoms (usually pain) caused by large liver mets by shrinking the size of the tumors.
Re Alice's confusion: "..the doctor keeps going back and forth from "we cannot cure you" to "it looks great maybe you won't even need the surgery." Alice this is not "going back and forth." Both of these statements are likely to be quite true. It is very likely that your Dad cannot be cured of his cancer. And, if his response to the chemotherapy is good, it may be possible for him to avoid the burden of having his major surgery (having his esophagus removed) as part of his "palliative" treatment. It may also be the case that even if he continues to have problems with swallowing, he may find that his quality of life is improved with procedures that are less burdensome than surgery, eg. placement of an esophageal stint to keep the esophagus open.
Given the stage of your father's cancer, all treatments should be looked at from what is often called a "palliative care" perspective (rather than a "curative care" perspective) The questions then become NOT "Will this treatment cure my father of cancer? but rather "How will this treatment affect the quality of my father's life with cancer...will it make it easier for him to live with the disease? Will it let him live longer with the disease?" And, just as importantly, how will this treatment affect the quality of my father's dying...will it make it easier for him to have a peaceful and dignified death?"
bill bartholome
Date: Fri, 9 Oct 1998 11:10:36
Subject: Joyce re DAD
Joyce,
Your dedication to your father is inspiring. Your and your siblings need to know that being "scared, nervous and debating" the decision to bring him home can be dramatically ameliorated by getting hospice involved ASAP! You NEED hospice to assist you in doing this kind of heroic work. And, you need to be very clear and very demanding with the hospice you select that you need a lot of HELP from them and you need it yesterday!
bill bartholome
Date: Sun, 11 Oct 1998 12:06:21
Subject: kathi re her mom and "what can we do?"
kathi,
One of the most helpful things you can do for your mother right now is to let her know that you are ready, willing and able to "talk with her" about her dying and death. One of the most powerful factors is "bringing about the kind of peace" that hospice often brings into a person's (family's) live is a willingness to "get real"...to "be real" about what is going on. Your mother's emotional reactions may be fueled to a greater extent that she (or you) realize by the kind of terror that many Americans have about death.
bill bartholome
Date: Mon, 12 Oct 1998 11:05:27
Subject: Re: EC-GROUP Digest - 10 Oct 1998 to 11 Oct 1998 (#1998-289)
Ann,
Although it is not common, spread of adenocarcinoma of the intestive, including EC, to the brain is well recognized. The most common spread (as is the case with most cancers) is to lymph nodes, esp. the lymph nodes that surround the esophagus, i.e. lymph nodes in the chest. Second most common is what are called "regional" lymph nodes, nodes that are in the same region of the body as the tumor. Third most common is liver spread. Fourth is spread to involve bones. Fifth is skin. These are so common primarily because they are so large in terms of the sheer size of organs. Sixth most common site is the brain.
Ann, there is also a big difference between acknowledging the reality of one's prognosis (what the best statistical evidence available says about one's chances) and deciding to "fight" to the end. Accepting that one has a terminal illness, i.e. the illness that is very likely to "take them to the grave," does not mean that one is ready for hospice care. But, accepting the fact of a terminal illness does allow a person to prepare self and family for what is very likely to come, i.e. death in the not too distant future. Getting "real" about death does not mean giving up on treatment; it does not mean stopping anti-cancer treatment. It does mean doing the hard work of preparing for this very important part of one's life, i.e. one's dying. It seems to me that this is what kathi's mom and her family had not been able to do; and, that this failure to "get real" was a part of what was creating the anxiety, confusion and chaos in her (and their) life.
bill bartholome
Date: Sat, 17 Oct 1998 11:31:21
Subject: Barrett's and EC
I was told that there is a significant annual rate of malignant transformation in people with Barrett's in the range of 1-2% per year. It is this observation that has lead to the recommendation that folks with Barrett's have endoscopy and biopsy at least once a year if not every six months. It is also this observation that has lead many to regard Barrett's as something that should be treated, eg. with photodynamic therapy or by prophylactic removal of the esophageal segment involved. Obviously, the five year or ten year cumulative risk of developing adenocarcinoma would be very high, i.e. in the range of 10-25%. There is also some evidence that aggressive treatment to prevent acid secretion and to stop reflux may result in regression of the Barrett's back into normal lining, but this is more controversial.
bill bartholome
Date: Sun, 18 Oct 1998 12:30:35
Subject: Dilations
Susan,
Symptoms you describe in your father should prompt performance of upper gastrointerstinal x-ray series (sometimes called Upper GI or Barium Swallow) to evaluate the size of the anastamosis (connection between esophageal stump and "stomach tube." If too small, will need dilation procedure .
bill bartholome
Date: Tue, 20 Oct 1998 23:02:25
Subject: Doug re fundoplication
Doug,
I think the statement that appropriate management is controversial is an understatement. The relationship between reflux, Barrett's esophageal changes and ec is very much a moving target.
Were I in your shoes,this would be my thinking. Reflux is the likely culprit in causing the development of the Barrett's changes. Prilosec is not adequately controlling your reflux symptoms. If this is the case, the esophagus is continuing to be irritated. If this is true, it is very unlikely that the Barrett's is going to regress. Much more likely that it would continue to worsen both in terms of the extent of involvement and the extent of the dysplasia (abnormal cells). If your not going to do PDT (since it is experimental), your only other option would be prophylactic removal of your esophagus. This is being done in Japan, but is felt by most American docs to be too heroic...too drastic a step. Granted that the fundoplication would complicate surgery for ec (should you develop it), but it would NOT make that surgery impossible. Fundoplication seems like an intervention that may well result in the end of reflux (along with medical management to block acid production). If it does "fix" the reflux, there is a good chance that the Barrett's changes would revert back to normal; and your risk of ec would fall dramatically, esp. if your esophageal lining became once again completely normal.
Don't know what that sounds like to you. Makes sense to me. But, that's just one person's opinion. Run it by your docs. See what they think of the logic of it.
bill bartholome
Date: Thu, 22 Oct 1998 14:11:46
Subject: Info re relationship between Barrett's and EC
Doug request info re relationship between Barrett's esophageal changes and the development of EC. Most up-to-date information I could find in the medical literature is contained in the following references. As you (or your docs) will discover, the exact risks of the development of EC in persons with Barrett's remains unknow. It used to be thought that about 25% of people with Barrett's would eventually develop EC. More long term studies in larger numbers of people now indicates that this figure is probably low. The risk may actually be closer to 40-50%. Obviously, calculating what this means in terms of the annual risk of developing EC is tricky business. The figures range from 0.5% to 2%.
See:
"Management of Barrett's Esophagus"
—in Proceedings of the Mayo Clinic 73:457-61, May 1998."Prognostic Factors in Esophageal Cancer"
—in Surgical Oncology Clinics of North America 6:515-531, 1997."Does Anti-Reflux Procedure Reduce Need for EC Surveillance in Barrett's Esophagus"
—in Journal of Thoracic and Cardiovascular Surgery 111:1135-1138 and 1139-40, 1996."Barrett's Esophagus"
—in Gastroenterologist 2(4):273-84, 1994."Barrett's Esophagus and Esophageal Cancer"
—in Chest Surgery Clinics of North America 4(2):227-240, 1994.
Bill Bartholome
Date: Sun, 25 Oct 1998 12:08:32
Subject: "...nothing left for them to do..."
Susan,
There is one more incredibly important thing your dad's docs have left to do for him. They have an obligation to make sure he is provided hospice care so that he might experience the most peaceful and fulfulling last chapter of his life that he can.
bill bartholome
Date: Sun, 25 Oct 1998 12:14:10
Subject: Re: fundoplication
Doug,
You should always trust docs who argue with you to wait before undertaking surgery. And, he may well be right. If there is no evidence of dysplasia...and, if the new drug you are using is effective in reducing the severity of your GERD symtoms, it is theoretically possible that the area of your esophagus that has undergone "metaplasia" (i.e. changed from squamous lining to adenomatous cell lining)--which is called Barrett's--may actually revert back to normal lining. Obviously, this would save you the morbidity of having to have the fundoplication surgery. Would push for every six months endoscopy and biopsy as a middle ground position; and, work out a tentative game plan for what time frame you will wait and give "medical management" a chance. For example, I would think that any evidence of spread of the Barrett's or evicence of dysplasia that develops might well prompt action.
bill bartholome
Date: Wed, 28 Oct 1998 11:41:26
Subject: More info re GERD, Barrett's and EC
After looking for info in the medical literature re the relationship between reflux, Barrett's and the development of EC and getting totally confused, I sought out the help of an expert: Dr. Norton Greenberger; Chairperson of the Department of Medicine at Kansas University School of Medicine and one of the best known Gastroenterologists in the country.
I found out the following. First, and MOST IMPORTANTLY, this area is undergoing rapid shifts in understanding and approach as more and more Americans are evaluated for symptoms of "reflux" (i.e. GERD or "gastro-esophageal reflux disease) and have endoscopies. The number of Americans undergoing endoscopy has increased several hundred percent in the past decade! The result is that everything we thought we knew about the relationship between reflux, Barrett's and esophageal cancer is also undergoing "RADICAL" changes.
This is what is "known" at this point in time. Reflux is much more common than anyone ever imagined. And, it may well be that the incidence of this problem is increasing in part because more and more Americans are being treated for "acid" related problems like gastritis and "ulcer disease" WHICH IT TURNS OUT IS CAUSED BY A BACTERIAL INFECTION, namely infection with the germ H. Pylori. Some think that this may account for the increase of 15% per year of the incidence of esophageal cancer in the United States since 1990. Treat one problem, create another! (Note 15% more common every year!)
About 50% of all people with cancer of the esophagus have evidence of Barrett's Esophageal changes at the time of their diagnosis or surgery.
More and more people are being found who have Barret's esophageal changes. It is now thought that most of these people, particularly those without much in the way of symptoms are at low risk of developing cancer of the esophagus. What makes the difference is NOT whether they have Barrett's or not, but whether or not they have evidence of what is called "DYSPLASIA," changes in the cells in the area of the Barrett's that are now thought to be "pre-cancerous" changes.
People with Barrett's who have NO evidence of dysplasia probably have a very low risk of developing cancer, particularly if they have been monitored for several years and found to have no dysplasia on multiple biopsies over a period of years. Many think that this may be as low as 5%.
People with Barrett's who have some evidence of dysplasia...so called "low grade" dysplasia are thought to have what was felt to be the "standard" risk of about 20% of developing cancer.
But, people with so-called "high-grade" dysplasia are thought to have a very high risk of developing cancer. As many as 50% of these individuals will develop cancer.
So, what to do? People with Barrett's without any dysplasia should probably be monitored by endoscopy with multiple biopsies of their area of Barrett's at least every two years (some say every year). They should also get medical management of any reflux symptoms they have.
People with severe dysplasia (and 50% risk of developing cancer) should probably consider the experimental approach of Photodynamic Therapy or the known effective but major step of esophagectomy to remove the entire area of Barrett's changes.
People with low grade dysplasia (the middle group) should undergo monitoring at least once a year; and, may eventually develop enough evidence of dysplasia to proceed to some kind of definitive treatment (PDT or surgery).
Does fundoplication surgery change these odds? Dr. Greenberger says that there is little evidence to support the claim that fundoplication to prevent reflux will "reverse" dysplasic changes and drop people with Barrett's into a lower risk group. What is not known is whether fundoplication will keep people who don't have evidence of dysplasia from developing it and from developing cancer.
So, that's the best I can do with this "moving target" right now. Hope it's helpful. Would be glad to continue to track down answers to any questions this info raises in your minds.
bill bartholome
William G. Bartholome, MD, MTS | Back to Top
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