William G. Bartholome, MD, MTS

ACOR EC-Group Posts: May, 1999

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Date: Mon, 3 May 1999 12:51:08
Subject: Dick/Jo Ann re Dad's Dying

Think you and your Dad are basically asking what I call "end game" questions. The basic end game question is "how will he/I die?" This question is best addressed by the hospice professionals. And, as they will explain, there are many exit strategies that can be used by folks with obstructing esophageal tumors.

It is incredibly important for your Dad to know that he is in the driver's seat from now until the end. All decisions should reflect his values, his needs. They may also reflect the needs of those who are his caretakers.

It is also important to know that one of the dominant features of almost all deaths related to cancer is the role played by decisions regarding nutrition and hydration. Use of stent--tubes--even IVs are usually avoided, if at all possible, because they significantly increase pain/complications; AND prolong the dying process. There is also the myth that dehydration and malnutrition are painful or involve serious suffering. There will come a point in the dying process of most of those dying from intestinal cancers where a decision will be made to stop eating; and, in many cases, a point in time where a decision will be made to limit if not stop drinking.

In my case, chocolate will the thing hardest for me to stop eating. And I will probably have at least a half cup of good coffee on the day I die!

Work out/develop a list of exit strategies with your Dad and the hospice folks!

Peace,
bill bartholome

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Date: Thu, 6 May 1999 11:56:05
Subject: Response to Helen re her Dad

Helen,

You might want to try looking at your Dad's situation from a different perspective. Persons with widely spread EC that continues to grow and spread following "standard" chemotherapy very, very rarely "respond" to any other form of chemotherapy. Even in the rare case in which there are what the oncology docs call "responses" --which means nothing more than evidence that the tumor masses have stopped growing or shrunk on x-rays--these responses are very short lived, i.e. they rarely last for more than a few weeks.

So, it is very likely that no anti-cancer treatment that he would be given would make much difference in his outcome. So, that means that he and you and the family should take all the time you want in exploring options. And, I would strongly encourage you to explore the option of comprehensive, supportive care only...sometimes called palliative care or hospice care. This kind of care has as its goal keeping your dad as comfortable as possible for as long as he has left. It would also leave him free of the significant side effects and burdens of combination or experimental chemotherapy. If he does elect to have more chemotherapy, would strongly encourage you to look for Chemo that has a minimum of side effects and burdens associated with its use.

Just another way of looking.

Peace, 
bill bartholome

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Date: Sat, 8 May 1999 17:17:10
no subject -- Marc

Steriotactic radiosurgery (sometimes called gamma knife surgery) is the delivery of a lethal dose of radiation to a specific area of the body. It has most commonly been used to treat brain tumors. I had steriotactic radiosurgery for a lesion in the right parietal lobe of my brain in January of this year for what we presumed was a metastatic EC lesion. Tolerated the procedure pretty well. Did sleep for 36 straight hours. Lesion in my brain is still present, but has not increased in size according to MRI since it was treated. Advantage for us was one single treatment. Disadvantage was the need to attach a metal frame to my head to direct the radiation beam for the procedure. Interestingly the cost was the same as for regular 15 session or so radiation therapy. Any use of this procedure for a primary EC tumor would be experimental. Have seen no reports in medical literature re its use to treat the primary lesion.

bill bartholome

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Date: Tue, 11 May 1999 12:59:50
Subject: Reply to Jackie re her Dad

Jackie,

One of the major reasons for getting hospice involved (whether he goes home or not) is that it is very, very likely that your Dad's treatment in hospital is dramatically prolonging and deforming his dying. Hospitals are set up to try to get people well. Dying people do not need this. For example, I would guess that he is getting IV fluids, if not parental (tube) feeding. I would guess that he is getting lots of medications that are aimed at getting him better (like antibiotics) instead of getting medications to control symptoms.

The dying need ONLY CARING. It is very hard to get ONLY caring for people in acute care hospitals. I assume that you or you mom checked to see if they have a palliative care service at the hospital.

bill bartholome

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Date: Tue, 11 May 1999 13:06:39
Subject: Tina re her Daddy

Tina,

Want to encourage you to help Dad sort through his options. Take your time. I do think the primary options are comprehensive supportive care (hospice care) vs. chemotherapy. And, although some people respond to the Chemo temporarily, Chemo will not make his EC go away and stay away. It may well be that you Daddy will be able to be with you just as long and have just as good quality of life with supportive care than with Chemo.

Just one cancerous person's views. Keep in touch with this group.

Peace,

bill bartholome

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Date: Tue, 11 May 1999 13:21:41
Subject: Carolyn re her Hubby

Carolyn,

Was very struck with your statement: "...wish I could be there when the docs come in..." You need to be there. Al needs for you to be there. You have every right in the world to be there. You need to demand either a separate visit with oncologist or an appointment with oncologist in Al's room.

Sorry that your hubby has such extensive disease.

bill bartholome

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Date: Thu, 13 May 1999 15:08:41
Subject: Debbie, spots and shock

Debbie,

You have every right in the world to be in shock over your spots. The development of metastatic disease to the liver while getting aggressive Chemo and radiation is not a good sign.

Yes, you could push for MRI and/or biopsy. You could also wait 4-6 weeks and repeat CT scan to look for evidence of growth in spots.

It is highly likely that these spots represent cancerous growths. In terms of what options this leaves for you, it narrows them considerably. Basically, you are looking at changing to second-line or less established, even experimental chemotherapy or radically alterning your approach to your disease by selecting comprehensive supportive care only. The odds are clearly against you. There is a very small chance that your "spots" would respond to second line drugs since they developed while you were getting the most effective drugs known for your condition. Most would peg this chance of "response" at less than 10%. It is also important to remember that the chance of a long-term response; a response that would significantly prolong your life, you are looking at a chance in the 1% or less ballpark.

On the other hand, it is very hard to predict what your quality of life would be like and how long you might live with palliative care only. You do need to know that there is NO evidence to suggest that any anti-cancer treatment of a person in your situation is known to be better than palliative care. So, I would strongly encourage you to look at becoming a person living with cancer...I call myself a cancerous one. It does have the advantage of freeing you from the role of cancer patient for a least a while.

Your shock will get better. Hang on. My wife, Pam, calls this an adventure to underscore the idea that you have to be willing to let go of any sense of control. I call it struggling to come to terms with the fact that "cancerous Bill" has become the dominant partner in my living/dying dance. It is a hell of an adjustment, esp. in a culture that systematically denies mortality. You will need to turn to palliative care/hospice professionals for support. When I made this choice, I got very little support from anyone in my family other than my incredible wife.

Keep in touch with this group. There are many cancerous ones amongst us. Yes, we struggle a lot, but we also have had some wonderful times.

Peace, 
bill bartholome

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Date: Fri, 14 May 1999 13:58:17
Subject: Andrea

Your Dad is Stage IV. Cure is not in the future for him. In fact, there is no evidence to support the claim that he will live longer or better with the proposed radiation + chemotherapy. Any response he will experience is very likely to be short lived. That said, many in his shoes would opt for a least one "round" of anti-cancer treatment before turning to palliative/hospice care. If that treatment seems to be making him feel worse, he can always stop it.

Morphine when used in the context of pain control with metastatic cancer is not addictive and can be used for years. This is an unfortunate myth perpetuated by America's insane war on drugs.

bill bartholome

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Date: Sun, 16 May 1999 13:53:11
Subject: Re: Sue's Dad; Stage IV; "nothing more to be done"

Sue,

Yes, brain spread means your dad is a Stage IV person. Radiation to the brain in this situation is likely to be aimed primarily at control of neurological symptoms and not "cure."

It is important to remember that there is always care of cancer to be given; even for us Stage IV people. There is never "nothing more to be done" until we are all "below ground."

That may not mean that cure of the cancer is possible, but lots of treatments; lots of work to be done; lots of caring to be provided; lots of love to be given.

It is likely that your dad's care will involve primarily measures taken to control symptoms since cure is probably out of the question absent some miraculous intervention.

bill bartholome

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Date: Sun, 16 May 1999 14:00:35
Subject: Debbie re mother-in-law

Debbie,

You will get no resistance from me re your proposal. I am very suspicious of the whole idea of chemotherapy for control of EC symptoms. I think there is little evidence to support any thing more than time limited trials of Chemo or radiation therapy in such a situation. If there is little evidence it is helping her symptoms, would strongly encourage stopping Chemo.

bill bartholome

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Date: Sun, 16 May 1999 14:15:38
Subject: Reply to Connie re Rich

Connie,

These symptoms and unusual behavior should be brought to the attention of his medical providers. Could be steroid induced pyychosis, but usually doses of steroids used with Chemo are too low to cause this. Could also be brain tumor. Whatever, it bears looking into. Doubt that this is primarily a "spiritual" phenomenon as suggested by another member of the group

. 
bill bartholome

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Date: Sun, 16 May 1999 14:24:08
Subject: Update Bill/Pam

Things continuing to wind down here. Ended up in the ER last night with shortness of breath, cough and what I thought were symptoms of obstruction of the major vein that drains the head and the upper half of the body. Well, I had not lost by diagnostic abilities, I do have partial obstruction of my superior vena cava. Chest x-ray also revealed an explosive increase in new tumor growth with enlargement of previous masses; scores of new spots; and an extensive fluffy involvement as the tumor cells work their way into lymph channels.

I was started on high dose steroids to help me with my symptoms so I could sleep better. The oncologist will probably want me to try some radiation therapy to the obstructed vein in my chest. I am not likely to do down that road, yet again. I had radiation for a brain lesion in December 1998 and radiation for a spinal cord lesion in March/April of 1999. I have never recovered from the debility brought on by the latter.

So, our time above ground grows short. We set up a meeting with the minister for this week to go over plans for my memorial service. Will likely touch base with our attorney re any last minute changes in the will/living trust documents.

Keep us in your hearts.

bill

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Date: Mon, 17 May 1999 17:58:02
Subject: Re: Pam and Bill; Response to Collette

Thanks for all you posts of love and support.

Colette,

I am living a "miracle" and have surrounded myself with a miraculous group of hospice professionals, palliative care specialists, oncologists and other professionals; an army of family and friends; the love of our children; and the most miraculous of miracles that constitute my life, my Pam.

Don't wait around for miracles. Go out and create them for yourself and for Henri. The kind of divine intervention miracles that involve things like dramatic cures of widespread cancer are rare as hen's teeth...otherwise they wouldn't be miraculous.

Although I will die open to that possibility, I do not live my life that way and I haven't lived one day of my life over the last five years "hoping for a miracle."

bill

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Date: Mon, 17 May 1999 18:06:37
Subject: MDA study and Jay

Don't know if someone at MD Anderson is blowing smoke up Jay's skirt or what, but the drug he is describing is widely available in the US under the trade name Zeloda. Lots of hype re this one...fancy brochures, etc. It is very likely to turn out to be no more or less effective than low dose, continuous infusion 5FU for those who used that approach at some point. May have a better toxicity profile along with the obvious advantages of by mouth administration. Not likely to be more effective. Previous non-responders to 5-FU are ver unlikely to show much in the way of benefit from the drug.

bill bartholome

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Date: Thu, 27 May 1999 20:08:18
Subject: Brief Report - Pam and Bill

Well, I did it. I lived long enough to attend my youngest daughter's (Claire's) graduation. That was my last goal. NO more goals!

Did the last radiation therapy treatment to my superior vena cava obstruction syndrome. Looks like I will have a less stormy death this way. Getting very weak now. Down to below 150#.

The cancerous Bill leads the boy now!

At some point in the future, one of you needs to take responsibility for making sure you all get a booklet that is being prepared by the Midwest Biooethics Center here in Kansas City for use at my Memorial Service. It will be titled "Medidations" and will include a large selection of stories, meditations, essays and prayers by me.

Will try to keep posting for a while longer. Haven't read digest in days now. Just a little preoccupied these days with living this dying stuff. It sure is a challenge to do this day after day in the face of the energy depleted state I'm left in following radiation

More later,

Love to all, 
bill

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