Loss | Loss of living life the way I choose to live it

Believe8053
Believe8053 Member Posts: 6
edited August 2021 in General Discussion
Change in relationships, change in the way others view me; change in what I truly enjoy in life; change in freedom, change in peace of mind

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  • Llk
    Llk Member Posts: 2
    edited May 2019
    Sorry. I missed this in the chaos of first being diagnosed and starting treatment.i am doing great with CA125 down from an original nearly 8500, to the most recent 21.6. I just had surgery today and am doing great. I will have 3 more chemos and hope to slap that CA125 down to single digits. I hope that your knee surgery has gone well. That one can be a very painful and slow recovery. You are now 4 months post, and I hope you are up to dancing. Your three rounds of disease have certainly earned you a rumba, at least! Good luck, Laurel
  • kalindria
    kalindria Member Posts: 15
    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
  • Llk
    Llk Member Posts: 2
    edited May 2019
    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.
  • kalindria
    kalindria Member Posts: 15
    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!

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