I had a quite a busy Thursday night and Friday.

I had a quite a busy Thursday night and Friday. I don’t know where to begin but I will try. Thursday night, I was frustrated from trying to reach doctors all day. I got a call from my sister, Jody, who gave me the name of a Dr. in California who treated an old friend of hers for melanoma. So I called him, and talked to him about the trial I signed on for. He felt the trial was inappropriate as a first line of defense. This was right in line with what the doctors in Pittsburgh said. They all felt is was more of a last resort treatment. Sooooo, of course I went into a ridiculous panic. Frantically, I began trying to reach my oncologist here in Rochester to opt out of the trial. Fearful that I signed my life away, I was prepared to run and hide from him if necessary. (When my wife came home she pointed out that there was a disclaimer enabling me to stop the trial at any time.) Whew!!!! The oncologist didn’t return my call—and the office was now closed. (Who closes at 4:30? That’s better than banker’s hours!) My next meeting with him would be 5 days away, and I needed to rectify the situation or I would not be getting any sleep. Then it occurred to me—where do you go after closing? Home, of course. So I picked up the white pages and began scanning through the names/numbers. Sure enough, his name and home address were listed. I dialed the number and his wife answered. Ooooh, was SHE peeved! But she passed the phone to my doctor. When he got done yelling at me, (he said he was not on call, and I should be calling the phone service…) he filled me in on the info he should have called me about earlier in the day. Apparently, he had had a conversation with Pittsburgh docs regarding the best paths to take. But he didn’t tell me everything. He said to call back at the office in the morning…

Not satisfied, first thing Friday, I couldn’t wait, so I called the Pittsburgh Doctor’s pager at 6am. (He had slipped that he awakens at 4:30 every day, so I figured I’d reach him.) He was kind enough to call and fill me in at that ungodly hour.

On Friday afternoon, I met the boy’s (the Kodak trio—three retired gentlemen who provided me with transportation to/from the hospital for my treatments, recently) at Silk’s for lunch. You probably know the place. Also referred to as O'Laughlin's, it is located on the river at the end of St. Paul Blvd. I was waiting for a phone call from the doctor, so I took my wife’s cell phone with me. We were enjoying lunch on the patio, and one of the guy’s said “Hey, the bikers should be arriving anytime now.” Just then, the cell rang. It was the doctor calling with the information I’ve been waiting for about the clinical trials I have to choose from. Suddenly a roar of noise rolled into the parking lot. I can only imagine what the doctor was thinking about my whereabouts. . . but somehow she managed to communicate the information to me.

I have a choice of 28 trials to choose from. 10 are particularly appropriate for me. And of the 10, 4 would be considered a good first line of defense. I don’t have a lot of detail, but my next appointment is in Pittsburgh on Wednesday. That’s when each of the choices will be explained in detail. Depending on which therapy we go with, I may actually be able to arrange to have the treatments here and go back to Pittsburgh only once a week or once every two to three weeks. This is good news, since even the Family Houses in the area cost $25 to $30 per night… this could add up fast!

Dilemma!!!!!!

I just finally got a communication from University of Pittsburgh Cancer Institute. They Found my copy of the PET/CT scan that I sent Fed-Ex. We had to track it down last nite and told Pittsburgh who had signed for it. They read the scan,and want to try a different therapy than the one suggested. (The two Chemo Drugs). They said that the Chemo drugs would not be in their top two choices. I desperately need them to be on the same page. I am trying to get them to talk to each other.
Time is of the essence!!!!!!!
Just venting my frustration.
It is starting to play out like "THE DAYS OF OUR LIVES"

Thalidomide and temozolomide in the treatment of metastatic melanoma - Skin Cancer

Foundation Update

Wen-Jen Hwu

Melanoma is the third most common cancer to metastasize to the brain. Due to the extremely poor prognosis (median survival is often less than 6 months) and lack of effective therapy, patients are often excluded from clinical trials.However, melanoma is a highly vascularized tumor, suggesting a possible role for an antiangiogenic agent in combating metastasis. Thalidomide has been shown to possess antiangiogenic properties. Preliminary research indicates that the combination of thalidomide and temozolomide--an oral congener of dicarbazine (DTIC)--may offer improved therapy for advanced melanoma.
Current Treatment
Chemotherapy and immunotherapy remain the primary treatments fur metastatic melanoma. Currently, DTIC is the only FDA-approved chemotherapeutic treatment. Response rates are often under 20 percent, with less than 5 percent of patients achieving a complete response. In addition, DTIC must undergo hepatic activation by the active metabolite monomethyl triazenoimidazole carboxamide (MTIC), and cannot cross the blood-brain barrier, so it is ineffective for patients with hepatic dysfunction or CNS metastases.
Actions of Temozolomide
Unlike DTIC, temozolomide does not require hepatic activation, and readily penetrates the blood-brain barrier. It is a prodrug that hydrolyzes to MTIC at physiologic pH. MTIC is the active metabolite of both temozolomide and DTIC, causing alkylation of DNA and inhibiting tumor growth.The complete oral bioavailability of temozolomide and its ability to cross the blood-brain barrier make it an attractive alternative to DTIC. Results from a large randomized study in patients with metastatic melanoma have shown that the activity of temozolomide is similar to that of DTIC when administered on a 5-day dosing schedule.As shown by Brock et al, a twofold increase in drug exposure could be achieved when temozolomide was administered on an extended continuous daily schedule. Continuous dosing with temozolomide might improve its antitumor activity by depleting a DNA repair enzyme involved in the tumor's drug resistance. It may also decrease the opportunity for tumor resistance.
Combining Temozolomide and Thalidomide
Whereas temozolomide works as a cytotoxic therapy, thalidomide has a cytostatic effect. Many of its biologic modulatory properties might have some therapeutic impact on melanoma. One or more of these activities may cause cytostasis and inhibit tumor growth. When administered in combination with cytotoxic chemotherapy, cytostatic therapy may inhibit tumor regrowth, development of resistant disease, and further metastases.In October 1999, our group began using this combination to treat melanoma patients with brain metastases on a compassionate basis. Through December 2000, 16 patients (median age 57 years) had been treated. Objective responses were observed in seven patients: four complete responses (CRs) for all visible tumors and three partial responses (PRs), with at least 50 percent of all visible tumors having disappeared. Median survival was nine months (range 3-34+ months), with a median follow-up time of 22+ months in the four survivors. Historically, median survival for such patients is 3-4 months.

Phase II Study
Based on these encouraging results, we conducted a phase II study of this combination therapy to establish its efficacy in metastatic melanoma patients with and without brain metastasis. Temozolomide was administered on a continuous daily dosing schedule for six weeks at 75 mg/m2/day with a two-week break between cycles. Patients <> 70 years old began thalidomide at 100 mg/day, with 50 mg/day increments at two-week intervals up to a maximum of 250 mg/day. The response was evaluated every eight weeks.Preliminary results for the 38 patients without brain metastases have recently been reported. Tumor regression was observed in lung, liver, and soft tissue, with objective responses in 12 patients (31.6 percent--one CR and 11 PRs). The median overall survival for the entire cohort thus far is 9.5 months; 5.9 months for nonresponders and has not yet been reached for the 12 responders (p = 0.02). The most frequent non-hematologic toxicities have included rash, constipation, vomiting, fatigue, dizziness, dyspnea, nausea, headache, non-neutropenic infection, edema, tremor, and drowsiness; most toxicities have been grade 2. Grade 3 lymphopenia occurred in 14 patients; < 10 percent of patients showed other grade 3 hematologic toxicities.This level of toxicity is mild compared to the most aggressive biochemotherapy, where the common toxicities are often grade 4 and hospitalization is required for administration. The effectiveness of this regimen also appears to compare favorably with phase III studies of either combination chemotherapy or biochemotherapy, where no survival benefit has been demonstrated.Our other study cohort, patients with brain metastases, is ongoing. To date, 21 patients have been enrolled; only 13 have received at least one cycle of therapy. Five objective responses in the brain have been observed--three CRs and two PRs. In general, this combination therapy is well tolerated, even in elderly patients who are not suitable candidates for more toxic regimens.A confirmatory multicenter Phase II study in large numbers of patients with brain metastases will be initiated by the Melanoma Working group at Cancer and Leukemia Group B in 2003.Conclusion
Complete responses are rare in stage IV melanoma, particularly in patients with brain metastases; a high proportion of these patients die from complications of the brain metastases. Thus, the responses achieved to date with combination temozolomide and thalidomide are extremely encouraging. They offer the potential prospect of an effective therapy, long-term control of metastatic melanoma, and significantly improved patient outcome.

References
Wen PY, Black PM, Loeffler JS. Treatment of metastatic cancer. In: DeVita VT Jr., Hellman S, Rosenberg SA (eds): Cancer: Principles & Practice of Oncology. 6th ed., Philadelphia, PA: Lippincott, Williams & Wilkins 2001; 2655-2670.D'Amato RJ, Michael S, Loughnan EF, Folkman J. Thalidomide is an inhibitor of angiogenesis. Proc Natl Acad Sci USA 1994; 91:4082-4085.Middleton MR, Grob JJ, Aaronson N, Fierlbeck G, Tilgen W, Seiter S, et al. Randomized phase III study of temozolomide versus dacarbazine in the treatment of patients with advanced metastatic melanoma. J Clin Oncol 2000; 18:158-166.Brock CS, Newland ES, Wedge SR, Bower M, Evans H, Colquhoun I, et al. Phase I trial of temozolomide using an extended continuous oral schedule. Cancer Res 1998; 58:4363-4367.Hwu WJ, Raizer J, Panageas KS, Lis E. Treatment of metastatic melanoma in the brain with temozolomide and thalidomide. Lancet Oncol 2001; 2:634-635.Hwu WJ, Krown SE, Menell JH, Panageas KS, Merrell J, Quinn CJ, et al. Temozolomide (TMZ) plus thalidomide in patients with advanced melanoma: a phase II trial. Proc Am Soc Clin Oncol 2002; 21:344a, Abstract 1372.WEN-JEN HWU, MD, PHDDEPARTMENT OF MEDICINE, MEMORIAL SLOAN-KETTERING CANCER CENTER, NEW YORK, NEW YORK

Some bad News!!!!!!!!

The PET/CT scan showed five new sites of cancer. Four of which are on my back and the other one appear to be on my lung. The doctor has rushed me in to have a CAT scan of my head. The scan is scheduled for 2:00 pm June 21.I have signed up for a National Cancer Institute Clinical Trial (NCT00104988) "Thalidomide and Temozolomide in treating patients with Stage IV Melanoma that cannot be removed by surgery." The drugs are not covered by the trial which will run $3000.00 a month. Pharmacare will pick up most of the tab but we will be left with a 130.00 a month copay Hey!!!! it is only money.They are calling the nodules hypermetabolic so time is of the essence. So I will be starting the trial as soon as possible.So it looks like I might have the summer off.Take Care and I will keep you posted

Where does melanoma usually spread?

Once the melanoma cells have acquired the ability to spread, the cells can wind up almost anywhere. The most common sites of spread include lymph nodes, lung, liver, skin, brain, spinal cord, and bone. When the malignant cells enter an organ they begin to multiply, forming individual tumors, and eventually they displace the normal cells. As time progresses, they will eventually interfere with the normal function of the organ, compromising the individuals’ health. As the tumors become larger and more numerous, the functioning of the different organs of the body continue to deteriorate until the damage is overwhelming and the patients dies."
Author(s):McClay, Edward F. MDMcClay, Mary-Eileen T.Smith, Jodie

"Why is malignant melanoma so dangerous?

"Why is malignant melanoma so dangerous?Of the three most common skin cancers, malignant melanoma represents the only truly life-threatening form. As mentioned earlier, this disease stems from melanocytes, the cells that produce melanin in response to UV radiation. Initially, melanoma spreads along the surface of the skin. This is called the horizontal growth phase. This growth phase can last months to years, depending on the type of melanoma involved. The melanoma subsequently begins to invade the skin in a process called the vertical growth phase. During this phase of growth, the melanoma cells gain access to blood and lymphatic vessels, allowing the cells to travel to other parts of the body. After the melanoma cells spread, the chance for cure decreases significantly. The melanoma cells invade normal tissues and destroy them by infiltrating and replacing the normal cells. In contrast, the great majority of basal and squamous cancer cells don’t have this ability to spread and therefore only invade locally. This distinction accounts for the substantial difference in prognosis between the different types of skin cancers."Author(s): McClay, Edward F. MDMcClay, Mary-Eileen T.

Called University Imaging at Science Park to obtain a burned cd of the PET/CT Scan. This will enable me to send a copy of the scan to Dr Kirkwood at the University of Pittsburgh Cancer Institute. I will pick it up this afternoon and send it Fed-Ex overnite so they will have it Tuesday. Hopefully we can get a conference call together with my Oncologist (Dr. Pandya at Strong). Lets hope the cancer is still localized still in my rightside armpit.We will then determine what the next course of action shall be.

As you all Know, I had a reoccurrence of cancer in the lymph nodes and had them surgerically removed on April 24th 2006. Recovery went well, and I had a PET/CT scan June 16th and at the present waiting for results. I see the oncologist on Tuesday at 3:00 pm. I think this website will work quite well as my communication tool of choice.