Karl Loren's Protocol The following letter was actually written when dated, and delivered to Dr. Benowitz. It later became the basis for his recommendation for coverage with the Insurance company. As of today, July 24, 2004, we are awaiting approval from the insurance company -- probably for a PET scan first, then the consultation at UCLA. I'll keep this page updated. The text in black is the original. I've added text in red (links) and green as additional, later, comments. There are TWO letters below -- one was the first, written in July. The one on the top was just finalized on August 17, 2004. Karl Loren 1831 North Bel Aire Drive Burbank, California 91504 (818) 558-1696 FAX (818) 558-7299 eMail: lct@oralchelation.com
August 17, 2004 Dear Doctor, My wife, Bonnie J. Troescher, has been approved by Lakeside for a consult with you on her problem of not having been able to swallow for some five months. She currently gets her nutrition through a J Tube. We have an appointment with you on August 30, 2004, at 2 PM. Strickly speaking this would be a “consult” about her swallowing problem, but in fact we are looking for a broader opinion since the swallowing problem is obviously releated to her recent several months of treatment for esophageal cancer. Probably the primary additional data that you should have would be the results of a swallowing test done on July 16th, and a PET scan approved and soon to be scheduled and done. It may be worth delaying our visit with you if the results of the PET scan would be useful to you and are not available to you in sufficient time for the 30th. You can certainly obtain any or all of Bonnie’s medical records, as you wish, but this letter is my summary of the data that I think most relates to the swallowing problem and my thoughts on a course of treatment. I am not a medical professional, but I am an avid researcher and author in these areas. You can, of course, also get her previous medical records from the doctors who have recently treated her and with the “patient’s release” form signed below. Generally her treatment has been covered under Secure Horizons, Lakeside Medical Group. Bonnie is NOT seeking any further consultation or advice on curing or treating the cancer. She will listen to such suggestions, but her mind was very firmly made up after 20 of the proposed 28 radiation treatments and after most of the scheduled chemo treatments. I have FAXed this letter that describes exactly what we are seeking in the way of a consultation and opinion with you. Bonnie J. Troescher has had many various treatments relating to cancer of the esophagus, her admission to Hospice Care and her continuing inability to swallow. Bonnie is 67 and has generally been in very excellent health all her life. This letter is written by me, husband of Bonnie. I hold the Advanced Directive, signed by Bonnie on June 16, 2004, for health matters.
Background Situation: Bonnie was diagnosed with esophagus cancer in late February 2004 during an endoscopic exam sought for swallowing problems. She then had three CAT scans covering the beginning and end of a two month period – the CAT scans showed no change in size of the mass during this time and showed it at about 7 cm by 2 cm. A later PET scan showed no metastasis as did a laparoscopy. There was something called “local invasion.” There were other tests, for some of which I have copies of the reports. Her conventional program included 28 radiation treatments, given over a 42 day period, during which she would be on 5FU 24/7 by infusion pump, 24x7, and two treatments of Taxol and Carboplatinol, one given at the beginning of all treatments and one at the end of three weeks. She had most of these treatments, but Memorial Day weekend was a rough week and when she saw the Oncologist the Tuesday after Memorial Day, he took her off the 5FU, and sent her to the hospital for a two-unit blood transfusion and tests. She then refused to go back on the 5FU and the Oncologist wanted her to take “some” chemo, and proposed further treatment with Taxol and Carboplatinol. Bonnie never agreed to those further chemo treatments and eventually told the Oncologist she would never go back on any type of chemo – that she would prefer to allow the cancer to kill her. She received white blood cell boosters and one other hospital admission where many tests were done in a vain attempt to find out why she was not better able to swallow. The radiation was interrupted by Bonnie’s hospital visits (three days, two visits) and an out-of-calibration machine. Ultimately, after 20 radiation treatments she refused to have any more – with the same story that she would rather die from cancer than have more radiation and die from that. Since the announced likely survival rate, before any treatment, was less than 20%, and since there were interrupted treatments Bonnie’s thinking on this was that chemo and radiation didn’t offer much hope at the start and refusing more after interruptions would not change things very much. She also felt that the pain and physical deterioration caused by chemo and radiation were worse than death. Her last hope was surgery. At the beginning of this process the surgeon told us that he might be able to do a “clean resection” after chemo and radiation – the Oncologist said “we are looking for a 50% shrinkage of the cancer after radiation and chemotherapy.” He indicated that it would then be up to the surgeon as to whether or not Bonnie would be a good candidate for surgery. The Oncologist reported that the last CAT scan, done about three weeks after the last radiation treatment, showed “at least a 30% shrinkage.” (A more accurate measure was not possible because the before and after CAT scans were done on different machines. There could well have been the “at least 50% shrinkage” described by the Oncologist as a good indicator for then doing surgery.) The radiation doctor at the beginning of treatment told us that radiation would eventually cause her to not be able to swallow; but that two weeks after radiation stopped she would begin to swallow and three weeks after she would be able to eat. That turned out to not be true. He never mentioned “scar tissue caused by radiation” and my research suggests this is one possible explanation for the ongoing swallowing problem. Well over 6 weeks after the last radiation and chemo, Bonnie was not able to swallow her own saliva, much less drink water or eat. She has been on a feeding J tube for food and water since about two weeks after radiation started. She is still dependent on this J Tube as of this writing. Starting with the swallowing test on July 16th Bonnie has often, but on an irregular schedule, been able to swallow soup or water. One opinion we seek is on the following specific prognosis given by the surgeon, Dr. Renner, after getting the “at least 30% shrinkage” report: The surgeon told Bonnie that she was “not a candidate for surgery,” that if he did do it. it would be an 11 hour operation with 30 days in ICU and a 5% chance of survival, and that it was not up to him, but up to the Oncologist. At the time Bonnie felt this was worse than a death sentence and asked the Oncologist for recommendation for admission to the Hospice Program. He denied that service, encouraged Bonnie to continue with more chemo therapy and when she absolutely refused those further treatments, he wrote an official letter, dated June 24, 2004, dismissing her as a patient and indicating that he had referred her for psychological counseling. The Primary Care Physician agreed with Bonnie’s assessment of the situation and recommended her for entrance to the Hospice Program. The second physician, at the Hospice also agreed and she entered the Hospice program in June 2004. Once in the Hospice Bonnie started using two pain patches, and has continued to use them. A couple times she wanted to get off one or another, or forgot to renew it, and felt bad enough to return to their use. One is 50 ml, time release Duragesic. The other is for nausea, and is Transderm Scop, 15 mg (?). Once within the Hospice, the inability to swallow was such a debilitating problem, apparentyly unrelated to cancer, that Bonnie was again willing to die rather than suffer more time in this condition. This is NOT a condition which she is willing to tolerate, even at the risk of a treatment which might be considered palliative, not curative. From our own observation and extensive research it seemed very likely that the swallowing problem was NOT directly caused by cancer, but more likely by the radiation and possibly by scar tissue caused by radiation. It could also be caused by the continuing existence of a “dead cancer mass,” because she had no trouble swallowing when the cancer mass was much larger, before the radiation. It appeared to us, and initially to the Hospice staff, that palliative care should cover treatments that would relieve the swallowing problem. Bonnie then, and now, is not interested in any further chemo or radiation directly intended to “cure” or remove the cancer. We believe that our spiritual faith may have caused a change in that area, but are not asking for any acknowledgment of that cause of change. In addition to that faith we have been using a variety of “alternative remedies” which we would be glad to describe. We are not seeking an opinion on any alternative remedies. However, the palliative care we sought was denied by the Hospice people who said that Bonnie should, rather, leave the Hospice program and go back under the regular insurance coverage – which she did. This “denial” was presented to us as if it were a “good thing,” that we would get more and better care by leaving the Hospice Program and returning to conventional insurance coverage. Lakeside, initially also denied the type of service recommended by our primary care physician, but that denial has been reversed by Secure Horizons and thus we will soon be getting a PET scan for her. I have done enough research to understand some terms and possibilities, and offer the following suggestions as a layman, certainly not as a health professional. v Bonnie has moved out of the Hospice to her standard Secure Horizons, Lakeside Medical Group, and insurance coverage. v Within that coverage Bonnie got the authorization for a “swallow test” using an X-Ray and barium. That test was done on July 16, 2004, and showed a mass and a narrowing of the esophagus. Bonnie was able to swallow some of the Barium and has since improved in her swallowing so that on some days she can swallow soup, water, but no food. The swallowing seems to change from day to day, being good enough for soup some days, and other days not even her spit. v Because of the good news about (1) no increase in size of cancer in the two months before treatment, (2) no metastasis ever shown, and (3) at least the 30% reported shrinkage, it seem unlikely that this blockage is caused by live or growing cancer. v It could well be caused by scar tissue – since I find that radiation is often reported as causing scar tissue – and the radiation was exactly on the esophagus area. v However, it would be dangerous, in my opinion, to do any further investigation that might aggravate live cancer, if it exists in the area where it had been, so I felt a PET scan would be necessary to reveal if the obstructive material is cancerous or not. I understand, for instance, that a PET scan can differentiate between scar tissue and cancer. This request was initially denied and that denial has now been reversed. v If there is no danger of aggravating any existing cancer mass, then an endoscopy may well be the right further palliative (or even curative) treatment, using any of the usual mechanical means of enlarging the esophagus for either a permanent or a temporary enlargement, and allowing swallowing. v There may also be a possibility of laparoscopy for which the purpose could be to remove any non-cancerous material and to remove scar tissue – but we would want an informed opinion that more scar tissue could be removed by laparoscopy than might be created by the procedure. v There may even be a possibility of the more traditional surgery to accomplish a clean resection or palliative reduction – but the former surgeon is not an acceptable surgeon for that procedure. If this is medically indicated, we would like your suggested referral on this. v I feel it is standard, and in our case necessary, to get a second opinion on any or all of this. I originally hoped that the insurance would cover that second opinion at UCLA. Since the insurance coverage has not approved this type of second opinion we have arranged for a private-pay consultation with a doctor at UCLA, now scheduled for September 7, 2004.
In addition to the above personal opinion on what might be needed, I would like to present the following symptoms and prognosis. v We differentiate between “swallowing” as a general action, and “spitting,” “gagging,” “vomiting,” “spitting or coughing up very thick phlegm,” and “dry mouth” versus “normal (moist) mouth.” v During the last four weeks there have been times when Bonnie could swallow water, even as many as 15 tablespoons of soup, with no difficulty. The barium X-Ray test showed that she could swallow, with a straw, rather large amounts of the barium water. v There have been other days when she cannot even swallow her own spit. These conditions have gone back and forth – it has not been a constant change in the same direction. Very recently, on August 16th, Bonnie was able to drink most of a glass of orange juice which she enjoyed, then some soup (broth). v As best we can observe she has a “normal moist mouth” at times, and at those times can usually swallow water and soup. v Other times her mouth is dry and she is not able to swallow. v Even when she gags, or coughs up thick spit, almost immediately after the mouth is again dry, and she cannot swallow. v During some of the more violent gaggings her breathing gets rapid as does her heart rate, but these return to normal quickly after she stops gagging or vomiting. We have not seen any abnormal body temperature during this time. During the traditional treatments she had several tests of her heart and lungs – finding no problems. v One of these episodes occurred on August 15th. Approximately one hour after receiving a “push”of various herbs Bonnie started gagging – which led to vomiting that became so violent that her whole body trembled. She vomited up bile, even through her nose. This wracked her body and left her gasping and feeling like she had been run over with a truck. Since our research shows that oil soluble toxins, such as in chemotherapy, get stored in fatty tissue, and since we have felt that our “home remedies” induce a detoxification of such toxins, it is understandable to us that as these toxins leave that fatty tissue, anywhere near the stomach, they could trigger this type of vomiting reaction. We also noted that this last episode occurred when Bonnie had forgotten to renew her Transderm Scop, and had gone 24 hours without that pain patch – that may have had some causative effect. Thus, while these vomiting actions are very unpleasant we welcome them as a part of the body’s cleansing. The fact that the esophagus is mostly obstructed simply means that only the bile can be vomited out during the spasms, not any actual hunks of toxic material. Our remedy for the discomfort has been for her to take Vicaden – that seems to help. v She is on the J Tube with either water (mixed with a mineral, germanium) or a medical food most of the day – getting about 1750 calories per day from the feeding. v In between tube feeding I give her manual two-ounce “pushes” which contain the various herbs and remedies we are using – and which usually seem to cause an instant change to a dry mouth. I am familiar with data that describes how hormonal signals can “turn water/blood” on or off in various parts of the body when the body’s needs for water change. I assume that the push of very active herbal items into the upper intestine causes an immediate call for water/blood to flow into that area – enough to draw saliva immediately away from the mouth. I assume further that this would cause swallowing difficulty, but could be a beneficial sign of increasing immune system action, detoxification and reducing the mass of dead cancer. v Her weight is remaining fairly constant at about 118, up from her low of 112, and down from a pre-cancer weight of 151. She thinks of 125 as an ideal weight. v She is in very good spirits, even through the gagging and related problems, mostly because she and I have found a “good explanation” for the continued swallowing problem. v The mass of the cancer, originally, was about 7 cm by 2 cm, and has apparently shrunk “at least 30%.” Even if it has shrunk by 50%, there would probably still be a large mass, whether live cancer or not, still adjacent to the esophagus. The barium X-Ray showed such a mass on July 16th. v I have asked several doctors about “where does this mass go?” when it shrinks – the answers have not been very helpful to my understanding. My understanding is that most such shrinkage would be caused by macrophage activity, and that some “dead macrophages” could well be expelled from the body in the form of phlegm, accounting for the very “thick spit” that she often spits up, or coughs up. v Only a few times, about six weeks ago the first time, she tasted bile in her mouth after gagging and we figured this was a good sign because it meant there was an opening from the stomach up to the mouth and the absence of any food in the stomach must mean that the toxic reaction that causes a vomiting reaction (with bile) would be caused by residual toxins from chemo or dead cancer mass in or near the stomach. She continues to gag, but has not tasted any bile in these last four weeks, until a couple weeks ago. v During that week she had another “vomiting episode” where there was a large volume of bile, wracking spasms, discomfort, but no solid material. Again, we think of this as “good news” and that the body is working to rid itself of toxic material, including dead cancer mass. With the esophageal blockage there could not be much vomiting of any mass of material. This last time, when she vomited, her spasms were quite violent and she felt very tired, immediately, but this fatigue seems to dissipate quickly. v She also seems to “burp” within seconds of receiving a push. v If this understanding is valid, then the spitting and gagging could well be very good signs that the immune system (with our alternative remedies in assistance) is doing its job in reducing the dead cancer mass and that it is dead macrophages being spit up. v We are ready to continue using our alternative remedies on our own advice, but we feel that surgery, or a balloon or stent enlargement by endoscopy might be safe and medically appropriate. Bonnie is willing to have either of these – I don’t see how either could be done without a PET scan first – to determine if it such invasive procedure is safe. v We would also very much like to have a confirmation of our hope that there is virtually no more live cancer mass, presumably by PET scan. I believe that if the PET scan shows no cancer, the usual oncologist advice would be, nonetheless, to resume some form of chemo and/or radiation. At this point Bonnie is very likely to refuse that path of treatment in favor of what we are doing with the alternative remedies, or even being readmitted to the Hospice program for that end.
We look forward to meeting with you and getting your opinions and advice on these matters.
Sincerely, Karl Loren, AKA, Loren C. Troescher
Copies To:
1831 North Bel Aire Drive Burbank, California 91504 (818) 558-1799 FAX (818) 558-7299 July 15, 2004 Dr. Benowitcz and any others who help on Bonnie’s treatment program Dear Irwin Bonnie J. Troescher may be seeing you as part of a treatment program and I would like to describe the situation and expectations briefly. Situation: Bonnie was diagnosed with esophagus cancer in late February 2004. She had three CAT scans covering the beginning and end of a two month period – the CAT scans showed no change in size of the mass during this time and showed at about 7 cm by 2 cm. A later PET scan showed no metastasis as did a laparoscopy. There was something called “local invasion.” There were other tests – all these tests would be available on an appropriate request. Her conventional program included 28 radiation treatments, given over a 42 day period, during which she would be on 5FU 24/7 by infusion pump, and two treatments of Taxol and Carboplatinol, one given at the beginning of all treatments and one at the end of three weeks. She had all these treatments, but Memorial Day weekend was a rough week and when she saw the Oncologist the Tuesday after Memorial Day, he took her off the 5FU, and sent her to the hospital for a two-unit blood transfusion. She then refused to go back on the 5FU and the Oncologist wanted her to take “some” chemo, and proposed further treatment with Taxol and Carboplatinol. Bonnie never agreed to those further chemo treatments and eventually told the Oncologist she would never go back on ay type of chemo – that she would prefer to die. The radiation was interrupted by Bonnie’s hospital visits (three days, two visits) and a broken machine. Ultimately, after 20 radiation treatments she refused to have any more – with the same story that she would rather die than have more radiation. Since the announced likely survival rate, before treatment, was less than 20%, and since there were interrupted treatments Bonnie’s thinking on this was that chemo and radiation didn’t offer much hope and refusing them would not change things very much. Her last hope was surgery. At the beginning of this process the surgeon told us that he might be able to do a “clean resection” after chemo and radiation – we were looking for a 50% shrinkage of the cancer. The Oncologist reported that the last CAT scan, done about three weeks after the last radiation treatment, showed “at least a 30% shrinkage.” (A more accurate measure was not possible because the before and after CAT scans were done on different machines.) The surgeon told Bonnie that she was “not a candidate for surgery,” that if he did do it it would be an 11 hour operation with 30 days in ICU and a 5% chance of survival. That is when Bonnie asked for and was given entrance to the Hospice Program. The radiation doctor, at the beginning of treatment, told us that radiation would eventually cause her to not be able to swallow; but that two weeks after radiation stopped she would begin to swallow and three weeks after she would be able to eat. That turned out to not be true. It is now well over 6 weeks after the last radiation, about 5 weeks after the last chemo, and Bonnie has not been able to swallow her own saliva, much less drink water or eat. She has been on a feeding tube for food and water for about two months. Bonnie has now left the Hospice program because they would not provide treatment for the non-swallowing. Bonnie is now interested in treatment, but will refuse any further efforts to get her to take chemo or radiation. We have spiritual faith that the cancer has shrunk totally, and possibly gone into remission. However, we do not have 100% certainty on this. We do not want any type of treatment that might aggravate the situation if there ARE live cancer cells there. What Bonnie now wants is “palliative” treatment to allow her to swallow. We will deal with any cancer, if there is any, without further expectation from conventional cancer treatment. I have done enough research on the web to understand some terms and possibilities, and offer the following suggestions as a layman, certainly not as a health professional. v Bonnie has moved out of the Hospice to her standard Secure Horizons, Lakeside, and insurance coverage.
v
Within that coverage Bonnie expects to get the authorization for a
“swallow test” and hopes that can be scheduled very quickly.
That test took one week to get approved
and scheduled. The results are reported here. In light of the obvious deliberate delays in getting service as described here, I submitted an official Letter of Complaint, August 4, 2004, found HERE. v The rest of this is my assumptions, but any part of it that some health care professional disagrees with I would like to have some clarification on that issue. v I presume that a Gastroenterologist (name unknown yet) would evaluate the swallow test and confirm what Bonnie knows, that she is not able to swallow. The test, however, may show the location of the blockage and other characteristics of it. v Despite the good news about (1) no increase in size of cancer before treatment, (2) no metastasis, and (3) at least 30% shrinkage, it seem unlikely that this blockage is caused by live cancer. v It could well be caused by scar tissue – since I find that radiation is often reported as causing scar tissue – and the radiation was exactly on the esophagus area. v However, it would be dangerous, in my opinion, to do any further investigation that might aggravate live cancer, so I would think a CAT scan is called for to get the exact location and size of the obstruction. v And a PET scan would be necessary to reveal if the obstructive material is cancerous or not. I understand, for instance, that a PET scan can differentiate between scar tissue and cancer. v If there is no danger of aggravating any existing cancer mass, then an endoscopy may well be the right further treatment, using any of the usual mechanical means of enlarging the esophagus for either a permanent or a temporary enlargement, and allowing swallowing. v There may also be a possibility of laparoscopy for which the purpose could be to remove any non-cancerous material and to remove scar tissue – but we would want to understand that more scar tissue could be removed by laparoscopy than might be created by the procedure. v There may even be a possibility of the more traditional surgery to accomplish a clean resection – but Dr. Renner is not an acceptable surgeon for that procedure. v I feel it is standard, and in our case necessary, to get a second opinion on any or all of this. I would hope that the insurance would cover that second opinion, hopefully at UCLA, and hopefully with a Dr. Milana Dolezal, a Fellow in the Oncology clinic. I do not know her, but she is highly recommended by another doctor I trust. The latest and good news relates to her swallowing. Thursday 15 July, she coughed, gagged and got up some bile. That is a sign, seems to me, that there is an opening from the stomach through the esophagus into her mouth – if so, that would be the first likely time in about two months. We are taking that as very good news. In the previous 10 days she “thinks” she was able to swallow, and keep down, pineapple juice, maybe even some water. Whether this is happening or not she has not been sure, but she feels that there has been this change in the past 10 days. Later on that Thursday she is quite sure she was able to swallow some small amount of water. The “bile” taste, however was unmistakable and encouraging.
Sincerely,
Loren C. Troescher
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