My Experience with Temozolomide as a Melanoma Patient

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  • DengYueMed
    Junior Member
    • May 2026
    • 9

    My Experience with Temozolomide as a Melanoma Patient

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    I recently started taking Temozolomide again. The last time I was on this drug was in February 2025.
    On December 22, 2024, I had a PET-CT scan at Union Hospital, Tongji Medical College, Huazhong University of Science and Technology. The results were encouraging at the time, with no evidence of metastasis. On January 3, 2025, I underwent radical surgery. The pathology report showed negative surgical margins and no lymph node involvement.
    I still remember the day of the surgery very clearly. I went into the operating room at 7:55 AM and didn't come out until 7:40 PM. It was a long and difficult day for both the medical team and my family. Although there were a few issues during post-operative care, the overall outcome was good, and I remain very grateful to the doctors and nurses who treated me.
    During recovery, I spent a lot of time researching adjuvant treatment options. Since melanoma is relatively uncommon, I also consulted several major cancer centers in China. I learned that Peking University Cancer Hospital, Fudan University Shanghai Cancer Center, and Sun Yat-sen University Cancer Center have extensive experience treating melanoma.
    I later took all of my medical records to Shanghai for another opinion. The recommendation there was DDP (cisplatin) + TMZ (temozolomide) + ENDOSTAR for 4–6 cycles. The treatment plan in Wuhan was 6 cycles of cisplatin plus temozolomide.
    In the end, I decided to stay in Wuhan for treatment.
    The reasons were very practical. First, I had just undergone major surgery and wasn't in a condition to travel frequently. I also have relatives in Wuhan, which made housing, meals, and daily support much easier. Second, I felt the two treatment plans were not dramatically different. I was also told by one specialist that ENDOSTAR was more commonly used in advanced-stage disease. Wuhan has some of the strongest medical resources in central China, and I trusted the oncology team there. Third, my father would have needed to accompany me for long-term treatment elsewhere. He has his own health issues, and extended travel would have been difficult for him. My work would also have been significantly affected.
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    However, things did not go as hoped.
    During the third treatment cycle, in early April 2025, a CT scan showed something suspicious. A noticeable lump had appeared under the skin, and it was visible to the naked eye. My oncologist suggested monitoring it and considering a biopsy during the next treatment cycle if it persisted.
    I didn't want to wait.
    I arranged a biopsy immediately. On April 10, the pathology report confirmed subcutaneous metastasis.
    After receiving the results, I scheduled consultations with specialists at both Peking University Cancer Hospital and Sun Yat-sen University Cancer Center. In the end, I chose to continue treatment in Guangzhou.
    Many people have asked me why I chose Guangzhou instead of Beijing or Shanghai.
    Honestly, there wasn't any grand reason.
    First, Guangzhou's climate is more comfortable for older family members.
    Second, from registration and testing to hospitalization, my personal experience was simply smoother there. Guangzhou is also close to Hong Kong, and access to new drugs and emerging treatment approaches tends to be relatively active. At that time, my mother received treatment with the oncolytic virus OrienX010 for her subcutaneous metastases, and that option was not available in Wuhan, Shanghai, or Beijing.
    Third, I was able to transfer my job to Shenzhen. We now live in Shenzhen and travel to Guangzhou whenever treatment is needed. Transportation is convenient, and we also have relatives in Shenzhen who can help support us.
    Looking back, one of the biggest lessons I've learned is that when dealing with a complex disease like cancer, there can be a significant difference in experience between top-tier cancer centers and ordinary hospitals. This is not to say that local hospitals are inadequate. Rather, major cancer centers often have greater case volume, stronger multidisciplinary teams, and earlier access to new treatment approaches.
    Of course, everyone's situation is different. Financial resources, family support, physical condition, and work responsibilities all play a role in treatment decisions. What works for one patient may not be the best option for another.
    As for Temozolomide, I've used both the original branded version and Chinese generic versions. The side effects I've personally experienced or learned about include nausea, vomiting, constipation, anemia, lymphocyte reduction, and abnormal liver function tests. Reactions vary greatly from person to person. Some patients tolerate it quite well, while others struggle significantly. For me, nausea and blood count suppression have been the most noticeable issues.
    I'm sharing this mainly to document my own treatment journey and hopefully provide some reference for others facing similar situations. I hope everyone can avoid a few unnecessary detours and find the treatment plan that works best for them.
    The road through cancer is already difficult enough. If we can help each other avoid even one mistake, it's worth sharing our experiences.
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