William G. Bartholome, MD, MTS

ACOR EC-Group Posts: February, 1999

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Date: Thu, 4 Feb 1999 18:50:57
Subject: Reply to Janice and Nikki

Janice,

The rate at which adenocarcinoma of the esophagus varies dramatically. Rate of cancer growth is normally measured in what are called "doubling times," i.e. the time it takes for a tumor mass to double in size or volume. There are a few people with this disease that have doubling times that are measured in weeks. Most have doubling times that are measured in months. There are a few others, like myself, whose doubling times are measured in years. As far as I know there is no explanation for why a person's tumor might have a fast or slow doubling time. What is known is that the rate for an individual patient does tend to stay the same over time...and, that the rate with solid tumors like EC tends to be the same in tumors no matter where they are located in the individual person's body. So, once it is known what the doubling time of the disease is for an idividual person, that knowledge can be used in making decisions about prognosis and treatment.

Nikki,

Yes, Stage IV disease does mean disease that has spread beyond the lymph nodes in the area of the primary tumor, i.e. those nodes are involved; and, the disease has gained access to the blood stream and spread to distant sites in the body...usually multiple sites.

That has lead many (including this cancerous one) to believe that Stage IV adenocarcinoma of the esophagus should be approached as a disease that can be "lived with"...and even "treated"--in the sense of measures that can temporarily affect the course of the disease or modify symptoms related to the disease...but not a disease that can be "cured"...or made to "go away" and "stay away."

I use the word "terminal" to charactize the disease when it is at this stage; and, quickly point out that all us all-too-mortal humans are "terminal" in an important sense; and, that some of us EC-types have been "livin' terminal" for a long time. I have found this kind of living..."living in the light of death"...to be incredibly rich and rewarding. Even now, as I am experiencing a lot of symptoms related to my illness, I am having a great time. Just got back from a wonderful visit to friends in Seattle the week before last; then a cross-country ski reunion with half of my 12 sibilings in the Boundary Waters area of northern Minnesota; and am off next week to work with Bill Moyers on a four-part PBS special on end-of-life care at Princeton University.

You do need to be aware that other members of this list think I'm quite morbid, if not nuts in the way I have approached my illness. But, each of us has our own "illness story" to share with you.

bill bartholome

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Date: Fri, 5 Feb 1999 11:54:06
Subject: Reply to Melissa and Teresa

Melissa,

I think one of the hardest parts about being emotionally attached to another human is that we have a hard time giving them the "space" they need to be themselves...to be the driver's of their own cars...EVEN WHEN WE THINK THEY ARE HEADED FOR THE EDGE OF THE CLIFF! Respect and acceptance are, for me, the keys to dealing with your father's decision to seek "faith healing" for his disease. You also need to be aware that this choice is not irrational. One can build a very rational argument for the idea that the best way to deal with Stage IV EC is to stay as healthy as you can...as active as you can...for as long as you can...using whatever "power" you can bring to bear on your disease. "Modern medicine" can't make his disease go away. So, his putting his "faith" in some other approach to his disease might actually be a reasonable choice. And, putting one's self in God's hands...regardless of what might come...might make good "spiritual sense."

Teresa,

You are absolutely right about you Dad's situation. And, I think most docs would argue that his only hope of "cure" is surgery. That is not to say that surgery would cure him. In fact, some doc's would argue that the chance of cure by surgery alone in this situation is low enough that surgery might reasonably be rejected. The other issue for your Dad to consider is that surgery may be the "best" choice regardless of whether or not a cure is possible. It may well be the best "palliative care" approach to his disease at this point...the best way to get the "best quality of life for the longest period of time." So, unless there are other medical reasons for him not to have the surgery, I would continue to encourage him...gently...to keep considering this possibility.

bill bartholome

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Date: Fri, 5 Feb 1999 11:56:31
Subject: Reply to Clint

Clint,

I could NOT tolerate having dilation with local anesthesia alone. I still remember the day I spent 30 minutes gagging and retching as my surgeon tried to do it. We finally agreed that my gag reflex was such that it was barbaric. So, I would encourage you to request what is technically called "conscious sedation" for you dilation procedures.

bill bartholome

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Date: Sat, 6 Feb 1999 14:40:20
Subject: Jane re her dad; dlechner re post-op chemo

Jane,

I think it hard to find the right drink to put on weight. Would suggest higher calorie food and continuing to separate food from liquid, i.e. drink only before and at least one hour after eating except for the sips necessary to get food down. I use small amount (4-6 ox\z) water to get down food. Need to eat at least every single waking hour. Locate snacks all over the house.

dlechner,

Your query re post-op Chemo is a good one. Given your findings, I would not think it would add much to reducing your risk of recurrence. Also, your risk of recurrence may not be high enough for you to "expect the beast to return." Your chance of recurrence may actually be below 50%. Check with your oncologist.

bill bartholome

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Date: Mon, 8 Feb 1999 13:23:07
Subject: Reply to Jack re "insurance chemo"

Jack,

Your use of the term "insurance Chemo" is misleading. Although some oncologists are now recommending addition of post-op Chemo in certain populations of EC patients, there is very limited evidence that such an approach decreases risk of "recurrence" or prolongs life with EC. I know of few oncologists who would have recommended post-op Chemo to a person with your findings following pre-op Chemo + radiation + surgery. You would have been seen by most as at low risk of recurrence of disease.

The fact that you are experiencing a recurrence or "resurfacing" of your disease is awful...sucks big time...(add any profanity you can think of). However, there are many EC persons who have experienced recurrence following the addition of post-op chemotherapy. In the interest of accuracy, most of those persons have had pathological findings that made them high risk (most commonly evidence of lymph node involvement at the time of surgery).

This is an awful disease. But don't beat yourself up for not having had post-op Chemo, there is no evidence that it would have prevented you from experiencing this recurrence/resurfacing of your EC. I wish you all the best on the "adventure" (my wife's term) that now faces you as a Stage IV EC patient. As you may know, some of us Stage IV people have pursued a strategy that involves only palliative medical interventions. Feel free to contact me directly if you are interested in this approach.

bill bartholome

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Date: Tue, 9 Feb 1999 11:01:01
Subject: To Colette re Henri's hiatal hernia

Colette,

Worrying about Henri's hiatal hernia in the context of his cancer is a lot like worrying about a hang-nail when one's hand is about to fall off. Put it out of your mind. It is not responsible for any of his symptoms and will not affect the course of his illness. To put it in perspective, all of us EC people who have had the standard surgical procedure for EC have a huge hital hernia that is created by our surgery! Hiatal hernias are also "in the eye of the beholder" they are often missed or misdiagnosed or underdiagnosed. It is also very hard to make this call by looking at the esophagus with an endoscope. Hital hernia is more a functional abnormality than it is an anatomical abnormality.

At any rate, you have enough real issues to worry about right now. Strongly suggest that you forget about it...post haste!

Peace,

bill

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Date: Wed, 10 Feb 1999 12:34:38
Subject: Reply to Teresa

Teresa,

PDT might make sense for your dad.

Symptoms of spread of cancer to lymph nodes and other organs: few if any symptoms until tumor masses become big enough to cause local trouble and symptoms.

If chemotherapy is to be used in an attempt to control disease, it is best used early, i.e. as soon after discovery of disease as possible. However, it chemotherapy is to be used as a palliative intervention (in an attempt to control symptoms related to the diease] it may make sense to wait until the symptoms develop.

The "strategy of only palliative interventions" is pretty straight-forward. The basic idea is that medical interventions would be utilized only if they were known to be of benefit in controlling symptoms related to the disease. In most circumstances, this would not involve much in the way of anti-cancer treatments other than localized or very "targeted" interventions. Like esophageal stents to keep the esophagus open; like radiation to a bone lesion; etc.

The basis of your father's refusal to undertake surgery is not clear. Is he refusing surgery knowing that this means that the disease will likely progress, i.e. he wants only supportive care while he lets the disease run its course? Does he think the PDT will "cure" him of the cancer? Or, does he think PDT will help give him local control of the recurrence of his cancer? Please remind us of the kind of EC he has, i.e. adeno vs. squamous cell.

bill bartholome

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Date: Mon, 22 Feb 1999 12:03:28
Subject: Reply to Wendy

Wendy,

Yours is indeed a most remarkable medical history. Your present predicament is also something about which there is very little information. I hear you saying that you have been told that you have esophageal cancer that has advanced to the point that it involves not only the esophagus, but other adjacent structures (assume lymph nodes), i.e. Stage III disease. Also understand you to be saying that both surgery and radiation are NOT options available to you, i.e. that the only approach to your disease that you will be able to use is chemotherapy.

If that is your situation, I think that the oncologists are right to be very dubious about any advantages involved in giving you chemotherapy. Clearly, there is no known chemotherapy drug or combinations of drugs that can "cure" EC at this stage. I'm not even sure that there is any combination that can predictably "control" your disease or significantly prolong your life in comparison with supportive treatment only. That said, there are a wide variety of combinations of chemotherapy drugs that are used in EC. The "response rate" (number of times the person's malignant growths "shrink" or "stop growing for various periods of time) for most of these drugs or combinations is in the ballpark of 20%.

In terms of a chemotherapy strategy, you might well want to select a combination (rather than a single drug); you might also want to include in that combination at least one drug that you would take on a continuous basis (like continuous infusion 5-FU); and, most importantly, given your medical history, you would want to select some combination that would have a low toxicity profile, i.e. likely to be well-tolerated.

Sounds like you are in a very "tight spot" with this cancer. On the other hand, you have managed to deal with this disease repeatedly in the past.

bill bartholome

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Date: Wed, 24 Feb 1999 10:38:12
Subject: Rob's pain

Rob,

I had my surgery in June of 1994 and have had the pain you describe ever since. You are suffering from what is called "post-thoracotomy syndrome" which is a form of "neuropathic pain." Unfortunately for us, this is a very difficult form of pain to control and tends to be very long lasting. I have used a drug called nortryptiline with good results. There are a variety of other drugs that are used. One of the newer drugs is one called gabapentin. Please check with your doctor to see if you can see a pain management specialist to discuss various approaches to your pain.

bill bartholome 

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Date: Thu, 25 Feb 1999 13:38:36
Subject: Response to Brenda

Brenda,

Could not tell from your post why it is not possible for you to talk with your brother. If you are experiencing communication problems in your relationship with your sister-in-law, why not bring those problems to the attention of your brother and let him help the two of you sort things out.

I also think it would be very helpful for you to separate your own informational needs from your desire to be helpful and supportive of your brother. There is plenty of time for all your informational needs to be met down the road. Is there anything that you "have to know" at this point in time?

I think there is a natural and healthy tendency on the part of the spouse of the cancer patient to try to be protective, esp. during the acute phase of the process.

bill bartholome

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Date: Fri, 26 Feb 1999 11:48:45
Subject: Alternative vs. Supplementary Health Care; Health Care Fraud

I do think any discussion of "alternative" health care or medical care needs to include discussion of the use of these interventions as a supplement to...or in addition to interventions that have been validated scientifically (standard medical care.) I think many members of this list use at least one "non-validated" or "supplementary" intervention. Most of us use many.

I also think it is critically important to distinguish one's decision to use some of these interventions from operating a business or "clinic" that provides only these interventions; AND, makes often fantastic claims about the value of these interventions in, for example, the treatment of cancer. For me there is a very fine line between what these organizations and individuals are doing and what can only be called fraud. It is almost always the case that these are interventions that are not covered by health care insurance. It is often the case that these are interventions that can only be sold to people outside of the United States.

As a pediatrician caring for children with life-limiting conditions, I have seen far too many families literally destroyed by so-called health care providers operating clinics in Mexico and preying on suffering people. Unfortunately, large numbers of people dying from cancer get caught up in these traps.

I would hope that one of the purposes of a group like this would be to help each other avoid becoming the victims of these vultures.

bill bartholome

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