personal histories

Pamela Smith
 Updated on January 28th, 1998.

Age 37
2 children: Daughter, age 7; Son, age 4
Husband: Lynn Johnson

Pamela's story began late in the Spring of 1995. We originally thought she had a hernia or fibroid cyst when she felt a mass in her abdomen. After seeing an ultrasound, her gynecologist sent her to Dr. David Marchetti in Buffalo, a gynecological oncologist. Because of her age (35) and lack of other symptoms, Dr. Marchetti was almost certain it was a cyst. A week later he opened her up and found a grapefruit-sized tumor. He had never seen anything like it, but the pathologists at his hospital came up with the dsrct diagnosis very quickly, to their credit. Very fortunately, Pamela had only a small number of isolated tumors which had not metastasized. This was very unusual, from what we have since learned about the disease. By the time this tumor is usually discovered, it has spread throughout the abdominal cavity.

We did a lot of research for the next month and talked to Dr. Brian Kushner at Kettering (among many other doctors). He had a protocol, called P-6, which was designed to address aggressive small-cell tumors like dsrct. His work was not overly encouraging and, we felt, inconclusive. On the other hand, there was evidence of some response (he claimed 50-75%, but that included corpses with complete remission in their autopsies). After questioning Dr. Kushner and convincing him to send her his latest research report, Pamela was still doubtful about P-6. On the other hand, he seemed to be the only game in town. She decided to wait and see if the surgery had removed all of the disease. If the tumor returned, we would give P-6 further consideration.

In December, 1995, a CT scan was performed, which was generally clear, but a few faint shadows appeared which were considered possible fluid accumulations (we found out otherwise later). There were also several small spots (less than 3mm) in the liver. Dr. Kushner was certain these spots were metastatic lesions and wanted us to come to New York and do a liver biopsy. Dr. Marchetti, on the other hand, was very doubtful of cancer in that area and discouraged a biopsy attempt. He figured Pamela would just end up with chopped liver and little useful information, predicting that the liver spots would turn out to be benign. We went with the conservative approach.

In January, a laparoscopy showed several small tumors recurring near the area of the earlier surgery. A CT showed no change in the size of the liver spots. It seemed P-6 was the next logical step. We decided against going to New York. Our doctor expressed a lot of doubt about the effectiveness of high-dose chemotherapy in general. Pamela was very uncomfortable with the idea. We finally decided to "do our own thing" and modify the Kushner protocol by using "lower" doses of the same drugs. This was a relative reduction, in that P-6 uses extremely high levels so that even our so-called reduced levels were well above "recommended" concentrations. Our doctor felt that if this combination of drugs was going to work on a specific patient, it would probably work at less than mega-doses. This was based on his experience with female cancers, personal research and, I think, his intuition.

Pamela began treatment on February 9th. After three courses of this modified regimen using 3-day infusions of Cytoxan, Adriamycin and Vincristine (CAV). Pamela had another CAT scan on April 15th. This showed two fluid-like shadows near the cecum and the right kidney. A biopsy of the cecum appeared to be scar-tissue of tumor origin. A second surgery was performed to remove the two masses. The cecum proved to be all scar tissue while the tumor near the kidney had a small number of active cells deep within the mass. The other small tumors seen during the laparoscopy in January had disappeared completely.

We were pretty encouraged, but Dr. Kushner advised repeating two courses of CAV at the highest possible doses. We agreed to the first one, but at the last minute, our doctor cut back the Cytoxan by about 20%. Then, before the second repeat course (the fifth in total), Pamela was having precognitive dreams and experiencing numerous strange syncronocities. It was all too much, so she wanted to cut back the last dose. By this point, our doctor was pushing for one final high dose, but he must have been dreaming too, because on the morning of her admission, he changed all the orders to reduced levels. As it turned out, it was a very good thing she didn't have the extreme dose, because upon returning home, she caught chicken pox for the second time in her life (she had a severe case during childhood). Since the high doses can push white counts down to 300-500, this might have been fatal. As it was, she got pretty sick and had an infection, but has recovered with only a small scar on her cheek. She took Acyclovir toward the end, and this seemed to help. A CAT scan done on June 13th was clear.

Now began phase two of the protocol: three courses consisting of 5-day infusions of VP-16 and ifosfomide over 21-28 day cycles. We started on July 8th. Again, at slightly reduced doses. It should be noted, again, that these reduced dosages were relative to the P-6 protocol. They were still above the pharmaceutically recommended maximum doses. Fortunately, Pamela had no major side effects and escaped blood and platelet transfusions. She was adamant about avoiding blood transfusions from the beginning and believes this may be one reason she had a better response. We have a theoretical basis for this, but none of the doctors buy it.

The third treatment of phase two on September 9th marked the end of the official P-6 as we had modified it. Ironically, although we had opted for lowered doses, the two extra CAV sessions probably resulted in equal or higher cumulative doses than the original protocol called for. We managed to take a short family vacation at the end of August, just before school. This was a much-needed break. The mediport, which resides under the skin, was a major benefit during this break, as throughout the entire treatment period. It allowed Pamela to swim and bathe unhindered at all times. She could have a pretty "normal" life between sessions and not have to worry about infections and constant wound-cleaning. Anyone who has had to suffer with an "external" access knows what a hassle it can be.

In addition to this "conventional" treatment, Pamela took every herb and vitamin thought to have the slightest effect on cancer, including Essiac tea, shark cartilage and Maitake mushroom. An outline of our herbal/nutritional "protocol" follows this history. She also received chakra alignments, psychic healings, prayers and magic. She was on more prayer chains than we knew about at the time. We figured if you throw everything at the wall, maybe something would stick. Keeping an open mind seemed very important, especially since we were asking as much from our doctor.

Now we needed to see where we stood. We discussed diagnostic alternatives, including blood tests, imaging and laparoscopy. Dr. Marchetti was open to the idea of a PET (Positron Emission Tomography) scan because he had recently seen some positive reports on the procedure. So we scheduled a test. The result was what we wanted to hear: "no evidence of disease or metastatic progression."

The dilemma now was what to do next. Having very good apparent response, we didn't want to drop the ball early. But the "expert" recommendations of Bone Marrow Transplant and full abdominal radiation seemed far too extreme. We consulted with a doctor at Roswell Park Cancer Institute, a pediatric oncologist who we had spoken to in 1995. He was very nice, but didn't add much. He suggested going the BMT/radiation route. Dr. Marchetti was very dubious about radiation in particular and not very keen on BMT either. We had pretty much ruled-out radiation back in December and nixed it for good now. Pamela did have her bone marrow harvested at the end of June "just is case." But we felt the BMT was not justified at this point. We are believers in the theory that immunity is a significant factor in any recovery and we didn't want to compromise her system just when it might be needed the most.

About this time we found Dave Denault via the internet and learned about a Dr. Sugarbaker (Washington, D.C.) and his treatment involving intraperitoneal chemotherapy. We had independently discussed the intraperitoneal idea with Dr. Marchetti earlier in the treatment. It seemed kind of logical that direct infusion to the intraperitoneal cavity might help get the chemo into areas of poor blood flow. It was also during these discussions that we brought up the idea of using DMSO (dimethyl sulfoxide) as a solvent for the chemo to improve penetration. I remembered hearing about DMSO 30 years ago in college as being a unique agent able to penetrate skin and carry soluble materials with it. Dr. Marchetti was noncommittal on the DMSO part, but since he had previously used intraperitoneal administrations himself, this approach was given a green light.

We talked with Dr. Sugarbaker's office over the phone a couple of times and they mailed a copy of his protocol. This method called for surgical removal of all peritoneal tissue and any other "unnecessary" organs, followed by bathing the open abdominal cavity with heated chemotherapeutic agents. Finally, tubes are left in the cavity for several days through which additional chemo is pumped in and then drained out. Pretty radical. From our perspective, this all seemed a little too much like the BMT/radiation ideas which we had rejected as being too harsh.

Further discussions with Dr. Marchetti led us to the idea of infusing "normal" doses of the P-6 phase-two drugs through a peritoneal port in Pamela's abdomen. Rather than trying to drain the stuff back out, we would let the fluids be absorbed back into the body. This procedure would be repeated three times.

On November 2, 1996, exactly one year after the initial discovery, Pamela had a "second look" surgery to visually explore the abdominal cavity. Everything looked clean and a "wash" of the area showed no evidence of malignant cells.

Intraperitoneal chemotherapy began on November 8, 1996. It was difficult and painful. By now Pamela was finding it nearly impossible to accept the needle insertions to her mediport. She has always hated needles and never got used to them during this ordeal. The pre-flight ritual had evolved into a double dose of Marinol on the way to the hospital, followed by 3mg of lorazepam and a final 10mg shot of morphine. After the morphine soaked in for a few minutes, lidocaine was injected around the port site to numb the area. Then she'd let them put in the needles. Now there were two instead of one. And to make matters worse, the intraperitoneal port failed the first time out. They ended up inserting a temporary tube (a "pigtail") via a guided CT scan.

Even with Zofran, Marinol and lorazepam, Pamela was too sick to take anything by mouth during the treatments and vomited frequently. We learned by this time that a full 24 hours of hydration after the end of chemo was necessary to prevent problems at home. Whenever we violated this rule, Pamela would end up very weak and dehydrated. One time she needed to be re-admitted to the hospital locally. Another time, a visiting nurse started an IV at home. Even at home, she would have difficulty drinking water for a few days post chemo. Luckily, she would snap back very quickly and within a week start to be her normal self again. But each session brought her to a new, lower level and it became more difficult to recover. Amazingly, she still managed to avoid blood and platelet transfusions. She did receive neupogen shots for 6 to 10 days after each treatment until the DMSO was started.

Two more intraperitoneal courses (10 & 11 total) followed on December 6th and January 27, 1997. The 2nd required another "pigtail" insertion, because we still couldn't get the abdominal port to work. Finally, on the 3rd course, Dr. Marchetti had to put in a whole new port because the radiologist was unable to insert the "pigtail."

On February 2nd, Pamela had to be readmitted to our local hospital for dehydration and severe abdominal pain. A couple days of IVs and she was back home again.

Since Pamela went through all the trouble of an additional surgical procedure to insert another intraperitoneal port, Dr. Marchetti suggested that we might want to go on and do yet another three courses. We said yes, but on the condition that DMSO could be included. I suggested the idea again after the 2nd look surgery but he wanted to finish the "standard" protocol first. He said we could think about that later, when we were done with the current program. He was probably thinking at the time that we would finish the whole treatment with just 3 intraperitoneal courses, so that he wouldn't have to deal with the DMSO at all. But Pandora's box was opened and we weren't about to shut it now.

During the Month of February we did the planning for the incorporation of DMSO. This ended up becoming a major challenge. Dr. Marchetti was willing to do it, but very little clinical information existed on the use of DMSO with chemotherapy in humans. There were some very interesting and encouraging articles on rats, though. The stuff is very safe and, in fact, is used to store human blood cells for bone marrow transplants. We did a lot of research & came in contact with Dr. Stanley Jacob who has done pioneering work with DMSO. He gave us a lot of encouragement and talked to our doctor about dosage. We also talked to a research pharmacist in California who had encountered a few cases where DMSO had been mixed with chemo drugs.

On February 20, 1997 Pamela had her first intraperitoneal treatment with DMSO dissolved in VP-16. Simultaneously, Ifosfomide was administered IV. The observable response was quite remarkable. Pamela's toxicity during the course of treatment was markedly diminished. Even more significant, her recovery after chemo was noticeable improved. Particularly her white count, which only dropped to 2200 in the days following treatment when they had previously fallen to 1000 or lower. She only needed 3 days of neupogen before it shot back up to 15,000. And this was after 11 earlier courses of intense, immune-depressing treatments. We have no way to evaluate the primary goal of the DMSO use, since there is no control or DSRCT blood tests to run. But the dramatic reduction in standard side effects of chemotherapy was reason enough to recommend it. We would certainly do it again. We only wish we had been able to incorporate the DMSO in the earlier treatments. The only negative side effect was the strong smell of garlic. Dr. Marchetti didn't visit in the room very long during these treatments.

Pamela's final intraperitoneal+DMSO treatment was given in May , 1997. Blood tests and CT scan done in June were all clear. Another CT scan was done in September, which also read normal and a PET scan done on November 28, 1997 came back good and negative.

Now it's just a waiting game and periodic testing. We keep our fingers crossed and the Essiac tea flowing. Dr. Marchetti is very optimistic about Pamela's outlook. We know we can't rest for several years, at least, but no matter what happens, Pamela has been very fortunate in her amazing response and wonderful medical support. She must also be given personal credit for an amazing strength of will and character. It also didn't hurt that that her blood and immune system must have been built by the same people who put together the "Terminator." No one can believe she went through all this without blood transfusions.

The following schedule is a summary of herbs and nutritional supplements that Pamela took during her chemotherapy. It should be noted that almost nothing was used during the actual chemo days. She rarely even drank water during those sessions. The herbs were started a few days after returning home. Currently, she takes reduced "maintenance" doses on a daily basis.

Theraputic Cleanse Nutritional
Astragalus Danelion Devil's Claw Nettle
Coenzyme. Q-10 Milk Thistle Beta Carotene
Essiac Tea (2 oz.) Nettle Calcium
Garlic Chamomile
Maitaki Mushroom Chromium
Maitaki "D" Fraction Digestive enzyme
Red Clover Ginger
Shark Cartilage Ginko Biloba
Pancreas Extract
Thyroid Extract
Vitamin C

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