William G. Bartholome, MD, MTS

ACOR EC-Group Posts: July, 1998

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Date: Tue, 7 Jul 1998 15:13:57
Subject: responses to Carol and Lori - Bartholome

Carol,

A few things that may be helpful to you. First, in the vast majority of cases it is possible to determine the specific cause of "hepatitis" (inflammation of the liver). Strongly suggest that you push for tests (mostly blood tests) to determine a specific etiology or cause of the hepatitis. Could be lots of things. Secondly, chronic, recurrent diarrhea is a person who has had standard surgery for EC is dumping syndrome until proven otherwise. Strongly urge you to make sure a dietetics and nutrition person is consulted who knows about "dumping syndrome" and how to prevent it. If no luck there, the "real experts" on dumping syndrome are right here, i.e. at Cathy's EC Cafe! Radiation can cause diarrhea depending on the area of the body radiated. The more of the belly that was in the radiated field, the worse the diarrhea. Chemotherapy can cause horrible diarrhea, that can often persist. However, again, I would push for specific tests to be done to determine what is causing the diarrhea.

Lori,

His willingness to say to you, "It doesn't look good for me, little girl," is a clear indication that he was very much "ready" to talk to you about his illness...his feeling that his life is being threatened. Talk of dying and death is often extremely "teary" and emotional at first. After a while, you and he will be able to talk about this aspect of his illness without bawling your heads off, but not now.

You should hear his willingness to say this to you as a sign of his trust of you...his love for you...the depth of his feelings. Do not pull back. Let him know that you are willing to listen to him share these kinds of feelings.

bill bartholome

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Date: Wed, 8 Jul 1998 12:03:09
Subject: Reply to posts - Bartholome

Louise,

One of the more common causes for waking up early in the AM and being unable to get back to sleep is depression. Might want to discuss with your health care providers. Usually this kind of "reactive depression" (you just went through a major life crisis that continues to threaten your survival] responds well to therapy.

Ed,

In the long history of cancer research and treatment, there have been very, very few (if any) "miracle drugs." This is a product of the irresponsibility of the American media; and, to a lesser extent, the hype that has built up around the "war on cancer." If there was a substance that could make EC "go away" in persons with Stage IV cancer, this information would not stay hidden away in some lab at the NCI. There is no such substance. And, it is very, very unlikely that one will simply "pop up." You need not beat yourself up wondering if you are struggling to deal with a problem that others are or will have "cured."

Ed,

Take your time. Given the extent of your disease, you could take at least several weeks to make the decision of whether or not to give chemotherapy a try. Getting a second opinion from a university-based cancer program is always a good idea. You also might want to consider having a consultation with a good hospice provider so that you know what they might have to offer you if you elect not to play the chemotherapy game. Also, strongly encourage you to see chemotherapy in your situation as nothing more or less than an experiment. If it seems that your disease is responding and you are experiencing an improvement of your symptoms, continue it. If there is not evidence of response or improvement in symptoms within one or two courses of treatment, you should feel free to drop it like a hot potato. You should also be prepared for the pressure that will be placed on you to go beyond the level of "standard chemotherapy," i.e. the pressure you will be under to enroll in a cancer research protocol involving an investigational drug or combination of drugs. Again, if you chose this path, strongly encourage you to put the burden of proof on those who would infuse you with these toxic agents. The number of people who actually benefit from involvement in Phase I or Phase II cancer research is very small (less than 5-10%). So, if they appear to be working for you, good. If not, drop them.

Karen,

May have misread your post, but it sounds like your brother Bob needs a gastroenterologist he can work with. It is likely that he will need a long-term relationship with a gastroenterologist. He will need to be placed on drugs that block his stomachs ability to produce acid (without producing intolerable side effects!). He will also need to have regular endoscopy examinations. If the changes do not go away, he will likely need to consider either the very new approach of PDT (photodynamic therapy) or the older approach of an operation to stop the reflux.

bill bartholome

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Date: Tue, 14 Jul 1998 10:11:42
Subject: Pain Management and Feelings of "Helplessness"

Marie,

I'm sure you will get lots of advice from members of this group. Mine may seem a little "different" to you. I would strongly encourage you to talk to the nurses (and docs) taking care of your husband about consultation with a Pain Management Service and/or a Palliative Care Service. I am making the assumption that Sloan Kettering can make either or both of these services available to him. If not, I would encourage you to ask that arrangements be made for your husband to be seen in consultation by an accredited Hospice.

It is also clear from your post that you are attempting to be your husband's "rock" in this situation. If that is your desire, you need a good deal of help and support in dealing with your fears, your feelings of helplessness and the like. It is very unlikely that cisplatin and CPT 11 will "cure" your husband of EC. In fact, it is likely that if he responds at all to the chemotherapy it will be a very temporary response that may or may not improve the symptoms and problems being caused by his cancer, esp. the pain. You may begin to feel less afraid and less helpless if you are able to "reframe" your understanding of your role and responsibilities at this very difficult time. There is the very real possibility that your husband's cancer related symptoms can be controlled. There is the very real possibility that you can provide him invaluable assistance in dealing with what for most of us is an enormous challenge, i.e. our dying. There is the very real possibility that you can help him "rise to the occasion" and live out a personally satisfying and memorable last chapter of his life. Dealing with these possibilities may help you feel less afraid and less helpless about the hard road he (and you) are going down.

bill bartholome

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Date: Fri, 17 Jul 1998 11:37:43
Subject: Radiation Therapy...then what?

Helen,

Suggest that you check this out, but I would guess that your 72 yr/o father has just completed a course of "palliative" radiation therapy, i.e. the radiation therapy was given in an effort to decrease the burdens of the EC on your father's life...to control the symptoms of esophageal obstruction. Since your father's disease is Stage IV (those "positive" spots on his liver) and since he has significant enough emphysema to preclude his having his esophagus removed, the doctor is likely attempting to provide "palliative care" rather than "curative care." If this is the case, your Dad would only be given chemotherapy if and when it was felt to be appropriate to control the symptoms of his cancer.

Your Dad's view that he is "going to be alright" may be OK, if he understands what "alright" means for a person with terminal cancer, i.e. he is going be "alright for now"..his difficulty in swallowing is better. This way of dealing with his illness may be "best" for your Dad, i.e. get treatment of the symptoms of the disease as long as that is possible...treat things one step at a time... This may also be your Dad's way of dealing with you..of protecting you. It may be that he thinks his daughter "doesn't need to know what is really going on."

On the other hand, if your Dad thinks that the radiation therapy has "cured" him of his cancer, he clearly needs to talk more with his physician. You might be surprised by what your Dad "really knows" about his situation. He and his docs may actually be "communicating" in as direct a way as your Dad is comfortable with communicating. Many elderly people like this kind of "oblique" communication style. Lots of nods and winks and "understandings" that are never really discussed in what we might regard as "open" or "honest" communication. Yet, both parties "know what is really going on."

If there appears to be less than adequate communication going on between your Dad and his doctors, strongly suggest that your Dad bring a trusted companion to his next visit...a companion who can make sure that your Dad's concerns and questions are all addressed by the docs.

bill bartholome

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Date: Sat, 18 Jul 1998 16:21:26
Subject: Replies to many - Bartholome

Ann,

Can't believe you would seriously consider spending 20,000 a year for oral 5-FU. There is no evidence to suggest it is anymore effective than regular 5-FU (given by vein or continuous infusion) AND some evidence to suggest it is less effective. Were I in your shoes, I would go for a protocol that allowed me access to at least one (if not a combination) of chemotherapy drugs which I had not previously been given. (I assume that you have had 5-FU in the past. ?CPT-11 ?the new relative of Taxol. You should also avoid reading too much into your docs mention that xeloda costs 20,000 a YEAR. As you well know, given your situation your surviving a year from where you are now would be remarkable. (Please note that I did not imply that it would be any less wonderful for being remarkable)

Allison,

The problem is getting good dope. If you have access to it, use it. The small amounts of good grass that are needed to get the effect are not a problem for people with EC. The anti-nausea effect can be gotten by smoking less than a gram at a time, i.e. a few good puffs. In fact, most people who smoke the drug now use a small metal pipe called a "single shooter" that is loaded with a tiny amount of the weed at a time. The only real problem is getting the drug. There is also THC in a pill form which some have found quite effective.

Allison,

Survival after surgery depends on a lot of factors, but primarily on stage of disease at the time of surgery. The figures you were given are quite "realistic" since many people undergoing this procedure are Stage II, III or IV. Sudden death with any form of cancer is unusual, including EC. Hospice cut its teeth as a social movement on cancer since its course is usually quite predictable and the dying is gradual.

Ellen,

Get your dad into hospice. Sounds like he has been through the ringer (along with you!) The fact that he does not have a definitive diagnosis DOES NOT mean he can't be admitted to a hospice. If his doc is willing to call him terminal and to estimate his remaining life at less than six months, he can be admitted without any more diagnostic studies. Does sound to me as if he has had a stroke.

Kathy,

Whether your 67 yr/o dad has a stent, laser or dilation procedure should be evaluated in light of his goals for the procedure. All would be "palliative," i.e. aimed at making his dying more comfortable or tolerable. If he had "had enough" of dealing with his cancer, he might also consider no palliative intervention to make it easier for him to swallow, i.e. continue to take liquids as tolerated.

bill bartholome

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Date: Mon, 20 Jul 1998 11:14:03
Subject: Grief work - American style

Must respond to Linda's poignant post re her husband, Tom. I think many Americans experience the kind of searching for support that Linda describes as a prominent aspect of her "grief work." One of the most peculiar aspects of grief American style is that Americans seem to place an inordinate emphasis on forgetting and getting on with one's life. Grieving people are not even allowed to talk about their dead after a few weeks or months. Grief is considered pathological if it last more than six months. It is as if our societal "need" to deny death and push it out of our consciousness operates even at this time of intense grief.

I have taken to counseling grieving people to devote as much "grief energy and resources" into remembering as they do into forgetting. This is what grief is like for most people in the world. I feel strongly that following our deaths, we go on living...we can continue to live rich and full lives in the mind/hearts of those who are left behind. Linda's experience/dream of her husband lying in bed with her is a wonderful example of how the continuing "existence" of the dead person can be a warm and comforting part of grief. I encourage people to do everything and anything they can to remain connected to the dead person...to find all kinds of ways and strategies for keeping the dead person alive in their mind/hearts. For me that has meant creating a wide variety of "shrines" in my home and office to people who have proceeded me into death. Seeing their pictures each day...talking to them each and every day about my life, my trials and tribulations...helps me keep them "present" to me and to my life in a very powerful way. In most of the world, a member of the family who has died remains part of the family for at least the next several generations. The dead are honored regularly...invited to participate in holiday celebrations. The birthdays of the dead are celebrated. In this country, most of us have come to think of Memorial Day as good day for a picnic or family outing rather than a day for visiting and honoring the dead. I have told all involved in my life that I hope to live far beyond the "fleshy period" of my time on this rock. I am trying to live so outrageously that I will be in at least some sense "unforgetable."

bill bartholome

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Date: Thu, 30 Jul 1998 17:42:54
Subject: Very Sensitive Topic - Bartholome

OK group, I've been working with you all long enough that you've gotten to know that I am a serious and committed member of this not-so-little group. I've been paying my dues in terms of trying to be as helpful as I can possibly be to anyone and everyone who has contacted me on list, off list and by phone. (You've actually kept me pretty darn busy!] I may have inflicted my often controversial views on you all from time to time, but I haven't asked you for much help.

Here's my request. I want your advice on a very sensitive issue. {I also want to see if we can actually deal with this kind of issue here in cyberspace.] I want to talk about intimacy between cancerous ones and their spouses, lovers or significant others. To be even more candid, I want to ask you about physical intimacy...OK...OK...let's call it what it is...I want to talk about sex. We are having problems in this area...my wife/lover/best friend and me.

Those of you who have heard most of my story may remember that Pam and I were engaged when I discovered I had Stage IV adenocarcinoma of the esophagus. And, miraculously, she decided to marry me anyway! We got married six months after my surgery. {Again to remind you, I have done no more anti-cancer treatment following surgery since I allowed myself to believe that Stage IV cancer is a fatal, terminal condition.}

What we want to know is does the existence of cancer...particularly the situation of having what Pam describes as "one foot in the grave" because of cancer...destroy the libido of the non-cancerous partner? No matter what we try, just seems like yours truly is the only one of us with any real interest in sex.

Is this a problem unique to our situation? There is very little re this issue in any of the literature we have consulted. We attempted to raise it with several couples in a group setting, but it was "too hot" for discussion. I thought that--since we are not sitting here facing each other--that we might be able to be honest and candid about this issue here in cyberspace.

Feel free to respond to me directly if you are more comfortable with that kind of response. And, actually, we are not only looking for some reassurance that others share our troubles, but we are looking for ideas about what we might do. Pre-cancer, we were both very interested in and very, very much enjoyed each other sexually.

Please bear in mind that we are absolutely crazy about each other. This woman is the best thing that ever happened to me in my whole life...may be the best thing that ever happened to any man. We both feel very blessed that I have had such a wonderfully long "reprieve" from the symptoms of my illness. We are more intimate than I've been with any human in my life. But, there is this business of physical intimacy...this business of sex and libido. Any help?

bill bartholome

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William G. Bartholome, MD, MTS | Back to Top
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