WLE Excision -head/neck

Viewing 5 reply threads
  • Author
    Posts
    • #15860
      Anonymous
      Inactive

      I am new to this forum and would appreciate anything anyone can say that gives me hope.
      I had WLE of head/neck. Positive margins at bone depth.Stage 3 btw. I was rejected for IPI/Nivo trial for this reason. Am to do radiation and then Taf/Mek. What should I expect? I am scared that since surgery November 2017, this has run rampant? Baseline CTs for meds will be scheduled late February. There are so many people with many different experiences. I would truly appreciate any input.

    • #15863
      Anonymous
      Inactive

      Hi, I know exactly how you feel. I was diagnosed in 2014 with Stage IIIc. I had a wide excision on my back with SNB. Some nodes came back positive so another surgery, 25 rounds of radiation, 1 year of interferon. Radiation was a cake walk. It was five days a week and I was in and out within an hour. I slathered my skin with glaxobase religiously and very minimal problems. One year of Interferon which was very difficult but I kept positive and counted down the days. Seven months into treatment cancer had spread to lung and neck, stage 4. Part of me was thankful I could stop treatment the other part of me was terrified. Thankfully I qualified for the OPI/Nivo trial and within 2 months the tumours had significantly shrunk. Side effects much less. My advice to you is #1 stay positive, have faith in yourself, #2 be good to yourself, nourish your body and spirit, #2 Have faith in your team, they are the experts and know the best treatment for you #3 never go to an appointment alone, ask questions, take notes, get copies of everything for your own file so that when you are having doubts you can go to your files, #4 Have that pity party, then move on. I finished my last treatment on July 7th and am still NED, yay!!! I am working hard at regaining my strength and feel pretty much back to my old self. I am still scared for every scan that I get wondering if this sleeping giant has awakened but for now I am living life to the fullest. I wish you all the best in this journey. You got this!!

    • #15864
      Anonymous
      Inactive

      Thank you so much for the encouraging words funshinegirl. I guess I just want to get some feeling of moving forward. If radiation starts at least I can believe something positive is happening.
      Good to hear you are NED. Wishing you the best.

    • #15872
      Annette CyrAnnette Cyr
      Participant

      Wise and encouraging words from Funshinegirl – thanks for those! There is nothing like hearing from someone who has walked in your shoes. When does your radiation start and for how long? Hoping it goes well. All these procedures can add a new layer of stress, so as she says, take care of yourself first – rest, eat well, and surround yourself with good and supportive people. If you would like any one-on- one peer support, reach out to Charlene at MNC and she can connect you. Wishing you the best results…

    • #15907
      Anonymous
      Inactive

      I went for consult with radiation oncologist today. Was very discouraged. As my WLE is not completely healed, but is progressing well, she indicated the damage from radiation would be an ulcerative wound that would never heal. I feel defeated. Has anyone experienced this? It was a very large, deep wound but the vac dressing has done wonders. As radiation is the only way I can get medication I know it has to be done. As usual, all the questions come to mind after you leave appt. shell shocked. Annette I believe I should contact Charlene. I am struggling. Thank you for the support.

    • #15910
      Annette CyrAnnette Cyr
      Participant

      Hi again – so sorry you are having these set backs. I too had a similar issue – had several recurrences and the surgery was at the bone. Was not an option to have the radiation as they figured I would lose use of my leg or may lose my leg. I am not clear however, how the drug access is connected to being able to get the Taf/Mek combo – I am assuming that it is because it is clinical trial for the stage III adjuvant setting and they want fully resected patients? Hmm. Likely. So, then perhaps it is a discussion with your Oncologist, if, given the circumstances that you still have positive margins and you don’t qualify for the trial, if they can request special access, because they really can’t operate further. So maybe it means that you would be unresectable stage III – which may allow you to be treated through regular routes – I maybe totally out of my element here, but it is worth asking. I feel confident they won’t just leave you without treatment. You may not have radiation as an option, but there may be other options. When do you see someone next to discuss? Charlene is just out on a week vacation and she can connect you with peer support when she is back – but if you would like to arrange a call with me next week, send me an email and we can chat. acyr@melanomanetwork.ca

Viewing 5 reply threads
  • You must be logged in to reply to this topic.
Menu