The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

T-Vec IMLYGIC (talimogene laherparepvec)

Forums Cutaneous Melanoma Community T-Vec IMLYGIC (talimogene laherparepvec)

  • Post
    searching2
    Participant
    As the wife and caregiver for my husband’s stage 4 melanoma I feel obligated to ALL of you to post this information about T-Vec or (Imlygic) which should NOT be used on large tumors!!! I see that my posting back in 2017 has been removed, also removed from any “Google Search,” probably by Amgen Pharmaceuticals or FCS as it might affect their sales/profits. After retiring to SW Florida at age 62 we were referred to Florida Cancer Specialists for my husband’s cancer treatments. Melanoma was first diagnosed in MN 2010 behind a mole on his right calf, surgery was done immediately and the cancer quickly spread to his lymph nodes in the right groin. Surgery was done again at Methodist Hospital and the cancer removed from the groin area. A new tumor started to grow at the surgery site next to the main artery. When we left MN for retirement to SW Florida the new tumor was the size of a walnut. The doctor at Florida Cancer Specialists tried a whole group of different immunotherapies, each time we would visit her she measured the tumor until a year later it had grown to emass his whole thigh…Huge! Why were we not referred to Moffitt at this point????

    I was panicked and searched the web every evening to find the latest information on new drugs available to shrink the tumor. In 2017 I found a new medication, T-Vec – IMLYGIC (talimogene laherparepvec) that was supposed to help. Three doctors, two from FCS and one from Mayo Clinic Rochester MN, approved of the Imlygic vaccinations (7 sessions of 4 vac) to be given directly into the massive tumor. My husband wanted to document how the tumor would shrink and had me take photos of the procedures. Within a few months the tumor exploded and tore through the skin at the site of his previous surgery and formed a Huge Black mushroom of necrotic tissue at the right groin!!!!

    His doctor at FCS didn’t seem concerned. I took him to 4 surgeons in the area who refused to de-bride the narcotic tissue as they said, “he could bleed to death” if they came near the main artery in the leg. We got on the next flight to MN and drove to Rochester Mayo to see if they could do anything for him. After two oncology surgeons saw him they wanted the Ortheopedic surgeon to view the tumor. The Ortheopedic surgeon came in and said, “the leg needs to come off up to the hip” I was horrified that this was happening to him! Wanting a second opinion, I brought him back to SW Florida and was going to bring him to Moffitt Cancer Center (EXCELLENT) He ended up in local hospitals with Sepsis 4 times, then had a stroke before I was able to get him to Moffitt where he had his right leg removed to the hip. Moffitt literally saved his life!

    After the leg was removed I looked at the Amgen Pharmeceudical website and found information on giving T-Vec treatment, it states: NOT to be used if the patient has had previous surgery at the injection site!!!

    Why, when 3 doctors had this information in their files about his previous surgeries did they miss this?????

    I have nothing but praise for Moffitt Cancer Center and the wonderful doctors and staff there, nothing less than excellent!!!

    Loading spinner
Viewing 1 reply thread
  • Replies
      searching2
      Participant
      This is the ONLY warning on Amgen’s website – One patient had to have an amputation?????? I think more like hundreds of Patients! This is NOT adequate Amgen!!!!!!

      5.3 Injection Site Complications
      Necrosis or ulceration of tumor tissue may occur during IMLYGIC treatment. Cellulitis and systemic
      bacterial infection have been reported in clinical studies. Careful wound care and infection precautions
      are recommended, particularly if tissue necrosis results in open wounds.
      In clinical studies, impaired healing at the injection site has been reported. IMLYGIC may increase the
      risk of impaired healing in patients with underlying risk factors (e.g., previous radiation at the injection
      site or lesions in poorly vascularized areas). One patient had an amputation of a lower extremity 6 months
      after IMLYGIC injection due to an infected non-healing wound. This wound area had been treated with
      surgery and radiation prior to IMLYGIC treatment and had previous wound complications.

      Loading spinner
        searching2
        Participant
        WARNING: T-Vec IMLYGIC should NOT be used on Large tumors!!!!!!!

        Loading spinner
      Bubbles
      Participant
      I’m sorry for what you and your husband have been through. However, I don’t think any of your post have been removed here. Is the 2017 post you are referring to?

      https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/searching-answer-t-vec#comment-103146

      I wish you both my best. Celeste

      Loading spinner
Viewing 1 reply thread
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.