William G. Bartholome, MD, MTS

ACOR EC-Group Posts: November, 1998

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Date: Sun, 8 Nov 1998 14:45:17
Subject: Reply to Ann re MD Anderson and more chemo

Anne,

Adenocarcinoma that has not responded to "standard" chemotherapy is unlikely to respond to other kinds of chemotherapy. However, short term, partial responses to other drugs (particularly to drugs to which the tumor has not been exposed) are possible. Would such "responses" be worth it in terms of the trade offs involved in the burdens and side effects of chemo? Tough call. My own bias is that people with metastatic (Stage IV) disease should only go on to other or more experimental forms of chemotherapy if they are at least in part interested in becoming experimental subjects, i.e. in making a contribution to the knowledge we have of this form of cancer and how it might respond to non-standard chemotherapy. 

It is not likely that there would be access at MD Anderson to drugs that are not accessible through Sloan Kettering. Most experimental protocols are sponsored directly or indirectly by the National Cancer Institute. What protocols are in use at what centers around the country is information that is accessible through the oncology group at Sloan Kettering. 

It is important to remember that comprehensive, supportive care only is a not unreasonable option. Some of us who have chosen this path have had very long-term "reprives" from this disease. It is very unlikely that any chemotherapy (or any other therapy) is going to get rid of the disease at this point in time. And, making the decision to stop chemotherapy is also making a decision to no longer expose oneself to the very real risks and burdens of chemotherapy--don't forget that simply "not working" is not the worst outcome of experimental chemotherapy. It is not at all uncommon that people with extensive cancer die of complications of aggressive cancer treatment and not of their diseases. In fact in a situation in which a cancer has not responded significantly to standard multi-drug chemotherapy, it is more likely that chemotherapy will shorten life than it is that chemotherapy will significantly prolong life. At this point in the process all decisions involve significant trade-offs!

bill bartholome

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Date: Fri, 13 Nov 1998 13:51:01
Subject: Re: EC-GROUP Digest - 11 Nov 1998 to 12 Nov 1998 (#1998-322) 

Nancy,

Dilation of a cancerous area of the esophagus is rarely very helpful. Most of the discussion of dilation that you have been reading is of the esophagus after surgery that removed the cancerous portion of the esophagus. The dilation is of a stricture or "scar" at the site of connection between the esophageal stump and the remodled stomach.

bill bartholome

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Date: Sun, 15 Nov 1998 10:45:14
Subject: Tina re gastrostomy tube 

Tina,

Might encourage your father to insist that the tube be removed. If it turns out that he can't get along without it, it can be replaced in a location that will not interfere with the radiation. 

bill bartholome

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Date: Sun, 15 Nov 1998 11:14:12
Subject: Responses - Bartholome 

Eugene,

Most common cause of difficulty with urination in your dad's situation would be a side effect of one of the medications he is getting. Ask doc/nurse to review meds with you re this concern. Usually possible to substitute another drug that does not have this side effect. 

Lauri, 

Re your question about brain metastases with EC, the answer is yes. Depending on which study you look at, brain is the fifth or sixth most common site of spread of this disease. The CAT scan or MRI you mentioned should determine if this is the case or not.

bill bartholome

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Date: Mon, 23 Nov 1998 13:55:00
Subject: Reply to Jim re his analysis of his options. 

Jim,

Sorry to be late getting back to you. Thought your analysis of the alternatives facing you was very well done. Don't think you are missing anything. Agree with you that it feels odd not to be involved in "fighting the beast." Would remind you that it is a very real and very rational alternative in spite of how odd it might feel. 

bill bartholome

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Date: Mon, 23 Nov 1998 15:53:23
Subject: Staying with the Group after Death 

Al and the group,

I think most of the reasons for support of this practice have been given by Al or those responding to his post. I think that several others might be added. 

First, the continuing presence of those who have experienced the death of persons at the hands of EC helps to maintain the presence of death in the dialogue of this group. This "presence" is a critical aspect of the mix. Many (?most) of the people involved in this conversation are facing and making decisions that involve a consideration of their mortality, i.e. they involve considerations of death...they involve making decisions about a disease that has as part of its nature a life-threatening character. Look at the word so many of you use...the "Beast." There is no more clear evidence that you take this disease to be one that involves "lives being on the line." Many (?most) of those who participate in this conversation will experience death "at the hands of" the disease which serves as the focal point of our conversation. We need to be reminded of this "reality." For example, at some point in the trajectory of this illness, many of us and our families should consider whether or not we would be better off...experience a better quality of life...should we switch orientations to a palliative or hospice approach to this disease. If none of us make this switch, we will be denied the many benefits of experiencing a part of our "last chapters" that is not dominated by and controlled by health care professionals and their technology...our last chapters will be totally "medicalized" and out of our control...we are likely to experience deaths in hospitals, if not in intensive care units hooked up to a multitude of life-sustaining medical technologies...we will be denied the experience of a peaceful death. 

A second argument in support of our encouraging family members to stay with us beyond death is that by staying with us they can remain connected to the member of their family who has died...they can maintain a relationship with their dead loved one. One of the hardest things about the "way" of death and dying in the United States is that once your dead, you are "out of here"...out of mind...out of our lives...buried and forgotten. For me, that makes the prospect of my death very, very hard. For those who will be left behind, it makes their lives harder than they need to be. Grief does involve "letting go" and "putting one's life back together." However, grief also involves creating ways of remembering...ways of continuing to have the dead person remain a part of our lives. This aspect of grief work is almost completely suppressed by American practices. In almost every other society on earth, the dead have an important "presence" in the life of the family they have left behind. In most homes in the other societies there is a special place where members of the family can go to "talk to" and "spend time with" the person who has died. In many societies there are special days devoted to the "return" of the dead and to honoring once again the lives of those who have gone before....birthdays of the dead are celebrated...holiday celebrations involve special consideration of the dead at the holiday feast. 

We need to support the bereaved of this conversation as a way of honoring those of our fellows who have died...as a way that we and they can continue to be connected with those who have gone before. I see this function as critical, particularly in a death denying culture like ours. We also need their voices as a way of "grounding" (pun intended) our on-going coversation as we seek ways to live with this disease.

bill bartholome

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Date: Wed, 25 Nov 1998 16:40:19
Subject: Thanksgiving 

Group,

Thanks for being here for me. You have given me more than you will ever know. But your being here has been the greatest gift of all. 

bill bartholome

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