William G. Bartholome, MD, MTS

ACOR EC-Group Posts: April, 1999

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Date: Fri, 2 Apr 1999 14:49:49
Subject: Julie's odd question

Do NOT think that he would experience this as another loss at all. My guess is that he will experience it as a wonderful, joyous event to be celebrated. Why says that people who are dying are not looking for things to celebrate? If you are close, this new development might be a great source of comfort for him...knowing that a new life will enter the world as he leaves. Being able to share with you the excitement of the pending birth of a grandchild...even if that sharing time is limited to a few weeks or months.

I have three daughters (29, 27 and 17). If one of them withheld this kind of wonderful news from me, I would be very hurt to find it out third hand. I also find it very hard to believe that any of them would withhold the news about the anticipated birth of a grandchild from their old man...cancerous or not! Unfortunately, I will likely die before the conception of any grandchildren.

Still hanging in here. Peace, to all bill bartholome bbarthol@kumc.edu Again, I would hope that your step-mother would also see this development as the wonderful, miraculous event that it is. I would not hesitate to share the wonderful news with her.

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Date: Mon, 19 Apr 1999 12:43:02
Subject: Dawn re her father's CAT scan

Dawn,

As I'm sure your father's physicians will tell him, a new spot on a liver CAT scan of a patient with EC is presumed to be a metastatic lesion, i.e. presumed to represent spread of the disease to a distant site. In rare cases, these lesion are biopsied (depending on the initial stage of the disease; results of the pathological examination of tissue removed at surgery; etc.)

Sorry. 
bill bartholome

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Date: Tue, 20 Apr 1999 12:27:17
Subject: Reply to Sandy and Shelva

Sandy,

Through trial and error attempt to develop a list of high calorie, high-fat foods. My list includes: half and half instead of milk; chocolate (up to half pound per day of Hershey's with almonds; butter instead of margarine on everything and anything; mixed nuts (a continuous grazing food); eggs; meat, esp. highly marbleized steak (I used to be a vegetarian!); cottage cheese (high fat); Basically, look at everything that Weight Watchers would have you not eat and use that list for him.

Shelva,

Concentrate on recovery from surgery. No hurry re "what comes next" You should give yourselves as long as you need...even six weeks is you want to take that much time. Look CRITICALLY at all the options. My own bias is to agree with your surgeon, i.e. more anti-cancer treatment will not likely change long-term prognosis, esp. if there is significant residual disease, i.e. cancer left behind after the surgery.

So, strongly suggest vigorous rehabilitation program from surgery followed by the most intense living you two can undertake for as long as you can manage it. You might even be able to stay away from cancer docs for months if you are lucky!! Next step would be palliative/hospice care.

My wife and I were in a similar predicament in June of 1994. We managed to eek out over four years before the "cancerous bill" caught up with us last November. Things have been tough, but do-able for the past six months. I became a palliative care/hospice patient in January of this year. We did manage to avoid seeing a cancer doctor or having a CAT scan for over four years!!!

Peace,
bill bartholome

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Date: Wed, 21 Apr 1999 10:06:41
Subject: Response to Kathy re father and kidney failure; response to Cathy re Uncle Bob's vagus nerve

Kathy,

The development of kidney failure during this critical post-op period in addition to all his other complications should be seen as a huge "red flag," i.e. a sign that there is a very good possibility that he will not leave the ICU/hospital alive...should scare the hell out of you. He was already completely dependent on technological support for his gastrointestinal function. The development of kidney failure means that he has "two systems down." Failure of an additional system should prompt you to ask for a complete re-evaluation of what is going on...may well be that he is on his way to becoming a candidate for palliative/hospice care including consideration of withdrawal of life/death prolonging technologies. For example, it might well make sense for you to at least discuss making him "DNR" (do-not-resuscitate) since it would be very unlikely that he would recover from cardiac or respiratory failure.

Sorry...but better to be prepared.

Cathy re Uncle Bob,

All of us who have had portions of our esophagus removed have had our vagus nerves cut...it is an unavoidable aspect of the surgery. When our stomachs were resected and shaped into a tube, the muscle that controls the flow of material out of the stomach (the pyloris muscle) was cut since cutting the vagus nerve puts this muscle into a state of constant contraction that would make it impossible for anything to leave the stomach. It is also likely that the intestinal motility problems most of us have had including reactions like dumping syndrome relate, in part, to the fact that we have lost the function of the vagus nerve.

But, it is an unavoidable aspect of the surgery and does NOT contribute in any major way to recovery from surgery or life after surgery.

bill bartholome

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Date: Wed, 21 Apr 1999 10:25:49
Subject: Update Pam and Bill

OK, here's the scoop on us. As you know, I was Stage IV (spread of cancer to my liver) at the time of diagnosis in June 94. We elected to have radical "palliative surgery" to remove as much of the cancer as possible, but did not do other anti-cancer treatment. In fact, we assumed from the beginning that the next thing we would need would be palliative/hospice care. We also had no "monitoring of the status of my disease" (i.e. no CAT scans or MRIs] from June of 1994 until November of 1998.

What we didn't expect was to be able to live with the cancer for over four years without any major problems!!! Since November 1998, I have lost my right vocal cord; had steriotactic radiosurgery for a metastatic lesion to my brain; and, three weeks ago completed 12 high-dose radiation treatments to my neck for a metastatic lesion that had taken over my 7th cervical vertebrae and was growing into my spinal canal threatening to paralyze me from the neck down. I also have extensive tumors in both lungs and along the course of my neck, windpipe and surgically-created stomach/esophagus (the mediastinum).

I have NOT recovered from the effects of high-dose spinal cord radiation...still very weak, barely make it up a flight of stairs. Have not been able to work for about six weeks. Have had a major problem with pain (neck, right-shoulder and arm) and numbness and loss of strength in my right hand. Am now using Fentanyl patches for pain along with a complicated regime of medications to counteract the effects of the narcotic on my gut including oral Narcan (twice a day); metaclopramide (Reglan) four times a day; and a variety of stool softeners and laxatives. In addition I continue to have cough and cough up blood multiple times each day. My weight had fallen an additional twenty pounds (pre-surgery 214; post-surgery 186; now l64]. I also continue take pepcid (40mg twice a day) and nortryptiline (once a day) which I have taken since surgery.

Am very frustrated by my fatigue and multiple problems with my stomach and my pain medications. However, Pam and I are hanging in there. Our kids our doing pretty well with the exception of our youngest (Claire) who graduates from HS next month. She continues to keep herself as busy as possible and avoids all discussion about our situation. My parents continue to be almost totally unable/unwilling to support us, esp. my Dad. Pam's Mom has been a godsend. Many of my 11 siblings are "coming around" as are Pam's.

I gave a major lecture last week here at the medical center titled: "More Lessons of the Angel of Death" in which we shared the lessons that we have learned over this past five years about living with a terminal illness.

I hope that my disease will stabilize enough for us to have a little more time "above ground," esp. so that I can continue to be part of this electronic family that I have come to love so dearly...AND which has done so much for us over the years.

Peace and all our love to all of you,
Pam and Bill

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Date: Sat, 24 Apr 1999 12:32:13 
no subject -- Marc

George,

Since no one limited the qualifications in any of the three "visitors," I'll chose "Healer" with the clarification that I want a healer that is at least as qualified for the job of healer as Jesus of Nasareth. I'll accept no less qualified healers.

bill bartholome

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Date: Sat, 24 Apr 1999 12:36:57
Subject: Oral narcan for opiate intolerance.

Oral narcan is broken down by the intestine and liver as it is absorbed into the body. If the drug is given into a vein (!V) or directly through the skin (IM)it reverses the effects of all the drugs of the opiate class including fentanyl. So the oral narcan helps to reverse the effect the fentanyl is having on my intestine while not having any significant effect of the fentanyl being released into by body through my skin via the fentanyl "patch." That's the theory anyway.

bill bartholome

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Date: Sat, 24 Apr 1999 12:53:28
no subject -- Marc

Carolyn,

You are going to get some dramatic variations on cost of things...suggest you go with amount paid to providers by insurance companies plus out of pocket.

I have had the following high-ticket items: (1) Original surgery + 11 day hospitalization--approximately $60,000 (2) evaluation of vocal cord paralysis and staging of disease-$5,000 (3) evaluation of and steriotactic radiosurgery of brain lesion --$20,000 (4) high-dose radiation therapy to neck and spinal cord--$25,000 (5) medications (no chemotherapy) $5,000 TOTAL TO DATE $115,000.

Would estimate that low figure for surgery, radiation and chemotherapy will be about $150,000. High figures about twice that much. So, you can tell the prison folks that they are looking at spending between $150 and $200 thousand bucks. If they elected to allow him to forgo the rest of his sentence, would he be eligible for Medicare? Medicaid? Would make sure he would be before I'd press the case too hard.

bill bartholome

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Date: Sun, 25 Apr 1999 14:41:52
Subject: Doug re brother Richard

Doug,

You didn't ask for it, but here it comes anyway. In my humble opinion, the docs who are telling you and other members of Richard's family that he is doing well...looking good and the like...are doing you a profound disservice and him a profound injustice. From this cancerous one's perspective, Richard is dying and needs the loving/supportive help of a good hospice.

Reminds me of a grim scene I observed once as a resident. I and my fellow housestaff were undertaking cardio-pulmonary resuscitation on a six year old boy who was dying of refractory leukemia. His attending physician, a pediatric oncologist, walked into the room with a large syringe which he administered to the boy through a catheter in one of his arms. He noted our incredulity and stated calmly that he had just gotten a "new drug" from the NCI and thought that our patient was a "good candidate" for the drug.

bill bartholome

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Date: Sun, 25 Apr 1999 15:02:25
Subject: Andrea re her father

A.,

To be helpful to you and your father, you are going to need to get from him or his docs better info re the exact extent of his disease, esp. why he would not be a candidate for surgery. Best way to make sure that this info is forthcoming is to have a very pushy member of the family accompany him on his next visit; a member that will very carefully and methodically "grill" the docs for info re the exact extent of his disease. Where is the tumor? How big is it? Does it extend through the wall of the esophagus? Are there lymph nodes in the area which are enlarged? What did the CAT scan show? Did he have an ultrasound exam performed along with his esophagoscopy exam? Is there any other evidence of spread? Has he had a total body CAT scan to look for evidence of spread? Did he have a bone scan? It is also helpful if this accompanist has a list of questions to be asked and writes down (or tape records) exactly what is said in response to these questions. This info is your dad's; he has a right to know everything that they know about his disease, esp. the basis for decisions such as "you are not a candidate for surgery." Theoretically, this is not a judgement a physician can make without the active participation of his/her patient.

Do not understand why any "waiting period" would be needed or indicated...much less a four week one. Why wait? Waiting for what?

PDT would not be an option in either of the stages you list for your dad. In advanced cancer, PDT and lasers are used only for palliation...i.e. in situations in which this would be the best way of making the patient comfortable...usually situations in which the tumor was totally blocking the esophagus and the person was unable to swallow, even saliva.

The Dutch diet recommendations have a very limited scientific basis. On the other hand, are not likely to be harmful. Only concern I would have would be that of cost, esp. if this was to be an out-of-pocket expense.

You have every reason in the world to be scared. Sounds like your father may well have advanced disease.

bill bartholome

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Date: Tue, 27 Apr 1999 14:23:56
Subject: Response to Patty and Sharon; advice re tubes

Sharon,

There are no "small cells" in the esophagus. Therefore, there is no such thing as small cell esophageal cancer. Strongly encourage you to get a formal second opinion at a university-based cancer center. This may mean having his x-rays and pathology slides reviewed at another center. It may even involve getting another biopsy. My guess is that he is dealing with small cell cancer of the lung which has invaded the esophagus.

Patti,

Humans can live on water alone for four to six weeks. It is important that anyone who is dying examine carefully the extent to which the dying process can be deformed and prolonged by fluids, esp. IV fluids. In a hospice setting, providers do all they can to avoid use of IVs and so-called feeding tubes of all kinds.

Don't know what prompted your question, but in most health care settings, a patient would not be left on only water or only IV fluids for longer than five or six days before other efforts to provide nutrition were undertaken, i.e. enteral feeding (tubes) or parenteral feeding (feeding by vein).

Those of you having trouble with irritation at the site of gastrostomy tubes should consider asking for consultation with what is called an "ostomy nurse." They are specially trained providers who work with patients with tubes as well as patients with permanent openings (ostomies) like gastrostomies, ileostomies, colostomies and the like.

bill bartholome

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Date: Wed, 28 Apr 1999 14:51:13
Subject: Dr. B. eats crow

Group,

Want to apologize for shooting my mouth off re the business of small cell EC. As Ron Ginnetty found out by doing a little sleuthing on the internet, there are reports of small cell EC. He found four citations. Assume he has sent them on to Sharon. Keep telling you how much you have taught me over the years. Now you are teaching me medicine!

Sorry folks, 
bill bartholome

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Date: Thu, 29 Apr 1999 16:39:39
Subject: Post-operative nutrition; acid after surgery; H. Pylori and EC

I feel strongly that people who have had any kind of major esophageal surgery need formal dietary consultation in order to find the best path to good nutrition after these procedures. For example, anyone who is having ten watery stools per day is at serious nutritional risk and needs someone to discuss a wide variety of nutritional strategies for dealing with this problem.

Bryan Dyke's doc told him the irritation in his esophagus could not be related to acid production since esophageal surgery involves cutting the vagus nerve. This is NOT true. Many of us have needed to take acid blocking drugs after surgery to prevent acid reflux disease. (I've taken Pepcid 40mg twice a day for five years) Cutting the vagus nerve does decrease acid production, but it does NOT eliminate it. If the doc won't believe it, ask for a Ph study of your stomach. The question could be proven one way or the other in a mater of hours.

H.Pylori has been found to be statistically associated with gastric cancer. It is now commonly thought to be the fundamental cause of ulcers in the stomach and duodenum, i.e. not a simple overproduction of acid. I know of no studies linking H. Pylori and EC.

bill bartholome

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Date: Fri, 30 Apr 1999 13:47:12
Subject: A Bunch of Responses - Bartholome

Sheila re Al,

Several of us have had the experience of having lesions called "hemangiomas" that later turned out to be tumor...i.e. spread of the cancer. Strongly encourage you to have regular abdominal CAT scans to evaluate this "hemangioma."

Sylvia re Phil's Fever,

Fever likely evidence of infection that is not responding to antibiotics. May need hospitalization...work-up...combination of stronger antibiotics given by vein. Be assertive/demanding. This is likely a serious problem.

Depression

I tell people that depression is like quick sand. Once you realize that you are in it, you cannot get out of it by yourself...GET HELP!

Monitoring for Evidence of Recurrence

If we depended for changes in blood work as our only way of monitoring for recurrence, the recurrences would often be discovered very late. Monitoring also has to reflect needs and situation of the patient/family. Since I was Stage 4 at diagnosis and elected not to have any treatment other than surgery, we elected to have NO monitoring. We had no blood tests or scans for over four years. Why? Because we knew that the next step for me was hospice care...didn't want to live a life dominated by shadows on scans. If my initial treatment had been aggressive and I had ended up NED (no evidence of disease) after initial treatment, I would have selected something like scans every 3-6 months for a year...then, perhaps, every six months. I would NOT have been happy to monitor only by blood tests.

Marla,

"Re-staging" in persons with extensive metastatic disease, i.e. Stage 4 disease. Don't understand why you would push for "re-staging." This sounds like some kind of a game to me. What do you imagine the goal or purpose of such an exercise to be?

Your Dr. Gloom may be trying to get you to understand that cure is out of the question (absent direct Divine intervention); all treatment of extensive Stage 4 adenocarcinoma is "palliative" in a very important sense. All treatments given to such persons must be evaluated on the basis of how they effect comfort...how they effect quality of life. If they don't make you feel better, eg. decrease pain or other noxious symptoms, they are probably not worth much.

bill bartholome

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William G. Bartholome, MD, MTS | Back to Top
1998 ACOR EC-Group Posts: Mar | Apr | May | Jun | Jul | Aug | Sep
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