• Lynne-I-Am's Avatar

    Lynne-I-Am wrote on Llk's wall

    Lik, read your welcome to DebMH and wanted to wish you well on the surgery. Sending extra support . Please let me know how you are doing in the weeks ahead.

    4 Comments
    • kalindria's Avatar
      kalindria

      Hey Laurel, I don't want to throw a wrench into the works, but talk to your oncologist. I had this mindset that once I was through with chemo and surgery and the rest of chemo, that I was done done done and could walk away from this cancer nightmare forever. Not so. My onco had planned for me to have 12 months worth of maintenance chemo and I didn't understand why. She wasn't the best at communicating that to me so I stopped after 10 months and moved two states away. That was a good move because I am now a patient at Seattle Cancer Care Alliance which is one of the best care facilities in the world and I love my team!

      Then I had a recurrence. And back into remission. Then another recurrence. This is the norm for late stage ovarian or fallopian tube cancer. Please ask your doctors about this so you can have realistic expectations about your future. I hope I'm wrong but in case I'm not, I feel it's best to be mentally prepared. I was devastated as my first recurrence.

      Diann

      1 day ago
    • Llk's Avatar
      Llk

      Oh, do understand that. I know I will be waiting for the next shoe to drop, and at least this remission, pushing the disease-free interval as long as we can. I have done a lot off reading over the last four months. My background is science and before tha, nursing. So much of that reading is journal papers.

      I am being treated by Yale New Haven’s Smilow Cancer Center. We are very lucky to have choices in the northeast for our care, with Boston and NY within a drive.

      about 24 hours ago
    • kalindria's Avatar
      kalindria

      OK, gotcha. I just didn't want you to have any nasty surprises.

      about 23 hours ago
  • Llk's Avatar

    Llk wrote on CeceB's wall

    Best of luck to you from someone also on this journey!

  • Llk's Avatar

    Llk asked a questionOvarian and Fallopian Tube Cancer

    Metformin and OC

    5 answers
    • carm's Avatar
      carm

      Hey what are you doing here my friend? Glad to see you on this website...welcome, welcome.

      about 1 month ago
    • Llk's Avatar
      Llk

      Doing well. CA125 started at 8378. Now down to 78 before chemo#3!

      about 1 month ago
    • carm's Avatar
      carm

      Oh, I am so very happy for you my friend. You are so strong and so mighty...this is wonderful news. You are definitely the master of your biology. Keep well and keep going. Call if you need anything at all.

      about 1 month ago
  • Llk's Avatar

    Llk started following

    Question: Metformin and OC

  • kalindria's Avatar

    kalindria wrote on Llk's wall

    Hi and welcome, Llk! WhatNext is a great place to get advice, support, a sympathetic ear and more -- the folks here definitely "get it".

    I was originally diagnosed in 2013 with stage IV ovarian cancer and thought it was a death sentence. Initial treatment was rough but I made it through. My life has changed a lot in the five-plus years since I heard the words "We think you have cancer."

    Since that original diagnosis, I've had two recurrences and recently stopped treatment with Avastin and Topotecan so I can get a much-needed knee replacement. My tumors are very small and have been stable so I hope they continue to behave as I can't be undergoing chemo and have the knee surgery. That surgery is scheduled for Monday. Yippee.

    Please take some time to explore this site and check out the links, resources, Pinboard, and questions pages. You'll find lots of great information as well as a few chuckles. The people here are also happy to connect and answer your questions about our cancer journeys and how you can navigate the changes to come.

    Feel free to reach out if you have any questions or want to connect.

    4 Comments
    • kalindria's Avatar
      kalindria

      Great news! No need to apologize for missing this message. As you say, you had and have a lot going on. I'm so glad to hear about your CA 125 and surgery. Congrats! You're well on your way!

      The knee is doing well. I never knew how to rumba so I guess I can stick to a waltz?! I'm just thrilled to be climbing stairs easily and with no pain again. I'm working up to some possible hikes this summer. Except I just started chemo again yesterday. In the six plus months away from chemo, my CA 125 went from 14 to 67. I knew that was a possibility and had planned on more chemo.

      Again, I am thrilled to hear from you, particularly since you're doing so well.

      Diann

      1 day ago
    • Llk's Avatar
      Llk

      Best of luck to you. I am hoping to get out in my kayak soon. Had you been on any maintenance drugs after your chemo? I am looking at some trials.

      1 day ago
    • kalindria's Avatar
      kalindria

      This current chemo started out as maintenance chemo. I've been on lots of different protocols, including a clinical trial for 7 months. I also applied for another trial but was turned down due to a family history of a genetic variant I've been tested for and DO NOT HAVE! Anyway, yes, I've had maintenance chemo. Was there any particular drug you wondered about? I may have taken it!

      A kayak? That would be lovely. I live very close to Puget Sound and talked to my clinical trial director about kayaking but since I'd only ever done it once and lack stamina, she said it would be a bad idea. She didn't want to lose her favorite patient. The waters in Puget Sound are pretty cold.

      I hope you get out in that kayak very soon. And post photos please!

      1 day ago
  • macfightsback's Avatar

    macfightsback wrote on Llk's wall

    Welcome Llk,.
    I am glad you have joined us! When you first hear the bad news that you have cancer, it can be devastating. I was in shock for months. I had trouble focusing and solving simple problems. Since you know your stage, I am guessing you have had your debulking surgury. Sometimes they do chemo first but I believe you need surgery to be staged 3C. That's how it went in my situation, when I found out I was stage 3 C in July 2015. If you give us more information about where you are in the treatment journey, we could know how to help you better. If chemo is coming up, many of us can answer any questions you may have since we have had chemo too! (I have had it twice.). Wishing you more good days than not so good days.