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Well I had a nice 6 mos reprieve of NED but my ca 125 went up had a ct scan and now have a recurrence. I dont even know how to feel. My first round was July 2022. Any insights to manage this news is greatly appreciated 


  • Strongwoman
    @powderpuff I am thankful that you have posted and shared your news.  There is no one magical answer for your question.  I wish there was because it would make it easier on all of us.  For me, I knew it was recurring due to my symptoms and how I was feeling in general.  I kept it quiet from everyone until after my hubby's 50th birthday and beyond that.  I needed to see the CA125 numbers and the CT scan to be sure.  Once I had that, I let my circle know.  I felt lots of feelings at the time. Some of them were gladness that what I was feeling was being validated, despair at telling my loved ones and curiosity at what comes next.  I was in denial about having to stop working after they deemed me palliative and it took 4 doctors before it sunk in.  I had emotions of extreme sadness and cried and worried. It is a mixed bag of things to be honest. I joined a Palliative Day Program and started focusing on making things for loved ones, organizing financial, legal stuff, researched what I might be able to do next and slept as I was exhausted from the oral chemo they put me on.  I have LGSC which does not have a lot of options. I had 6 rounds of chemo which finished in Aug 2021, declared NED in the Sept, started feeling unwell and gaining weight despite going to gym on top of working full time in Jan and had to wait until March to see an Oncologist.  I didn't get my normal one and the one I had brushed me off and asked me "if I could step up my game" in answer to my weight gain. I hence had to wait another 3 mos to see my regular Oncologist.  It was like waiting on pins and needles. Once I did find out about the recurrence, I will say, everyone moved quickly and had me on an oral chemo fast. As for the HGSC, I believe there are multiple options of treatment out there which is promising.  The biggest question I asked myself then and continue to do is "what is my quality of life and what does that look like for me?".  I want to be as much of myself as I can be until I can't. There are many emotions involved but one does get through it.  Reach out and ask if you find you are not coping well with all of it. There are resources out there that can help. 
      Fairly long winded but I hope it helps you. Enjoy the nice weather and sunshine while we have it. 
  • Thanks for your comments. I appreciate it. I see my oncologist on Oct 11 so I’ll get some more answers then 
  • Strongwoman
    @powderpuff Your welcome.  I hope you have great news about treatment options and where everything is heading.  I want you to know what ever you have feelings about, is normal and you are not alone.  <3
  • Strongwoman
    @powderpuff Thought I would check in to see how you are doing.  What did you find out about treatment options and where things are headed?  Anything you want to share?
  • Strongwoman
    Well ladies I have some more info on where I am at with my treatment/condition.
    Latest bloodwork shows that my creatinine is back up to 62 from the 49 it was last time.  My CA125 climbed from 211 to 255 this past time. Plan is to re-do bloodwork in 2 wks and then 2 wks again.  Discuss with my palliative doc as well and determine whether a nephrostomy would be warranted in the near future or not.
      How do I feel about it?  Mixed!  Thankful I have been able to hold off on the nephrostomy and the double one they originally wanted to do last year. Mixed on having a nephrostomy and all it entails. I have watched some videos on YouTube about living with one. One person had some great ideas for bed which was pinning the bag to the side of the bed for ease of movement during the night, as well as emptying the bag 2-3 hrs after going to bed to last until the morning. The other was for showering and again, attaching the bag to the shower curtain for ease of movement.  
    I now understand better where the pain derives from post procedure and it totally makes sense.
     Am I prepared to have one done....nope!  In my head I either want it done soon before the holidays OR to postpone until it's all done so that good memories are attached with the holidays. 
     All in all I am still processing a lot of it and where things may be headed.  This doesn't mean I have given up on the turkey tail mushrooms and/or they aren't working.  I hadn't been drinking my tea like I was and am not taking a product the naturopath had given me over a year ago. So, I am purposely not doing either until next bloodwork then starting it again to see what the bloodwork reads in 4 wks from now.
      That's my plan anyways! Enjoy each and every moment with friends/family and do my best to hold off telling the family about any of it until the holidays are done.
  • @Strongwoman. Thanks for checking in and thank you so much for sharing your legacy projects at the forum. We cried through all of it but it was so necessary. I’m still waiting to hear about treatment. I had a ct scan last week and the lesion has grown but I feel good physically. I see my dr on Wednesday where I’ll find out more. I’m working but can’t get my mind off this recurrence. I’m trying to practice mindfulness but with little success. It’s crazy making. Thanks again for checking in 
  • Strongwoman
    @powderpuff Your welcome. I was honoured and happy to be able to share what my Legacy work is and hope that it inspires others to begin.
      Yes, it is tough to work and know you have a recurrence. More difficult still I the not knowing what that means for you, treatment and outcomes.  You are almost there to get some answers.  Ask the questions you need to at your appt. If you need some time off, talk to them about it.  We will all be here for you after you obtain more info and will all help the best we can to support you through what is to come.
      A couple more sleeps is all the countdown you need...
     Take care of <3
  • @Strongwoman those words have given me great comfort. I think I want time off because I’m so distracted but then I don’t want to let my colleagues down as I’m working on a high profile project at work. I know my health matters more but work keeps me occupied. I could occupy myself with song writing and outdoor stuff. If only money wasn’t an issue. 
  • Strongwoman
    I am thinking of you @powderpuff and hope your appt goes well tomorrow so that you obtain the answers you need.  As for time off, I can see your point of view regarding work and finances.  It is scary.  I owned my own business and it was the most difficult decision I have faced. Retiring from my profession.  I don't believe from reading your posts that you are at that end of it. There are options out there for finances and perhaps your work place has a short or long term disability that you can tap into?  Best to discuss with your doctor and see if they have any suggestions/options for you.  Being on a high profile project, is that exciting/hard work collaborating with peers to come up with a solution and possibly a good distraction for you? OR Completely the opposite.
      Get some rest.
  • @Strongwoman so back from the appt. My symptoms are minimal and disease progression is also limited between Sept and Nov. I’m going to enjoy the holidays and start treatment in Jan for 3 rounds. I have an awesome bike trip planned for the end of April so looking forward to that. As for work it is cool to work with a great team. I have a hard time focusing on it though. 
  • Strongwoman
    @powderpuff It sounds like it was a better outcome than perhaps you expected?  The plan in place sounds like a good one and thought out. How do you feel about it?  A bike trip.  Sounds exciting. Where and for how long will you be biking for?  Yes, focusing is an issue many have which can arise from diagnosis (thoughts that go with it), chemo (brain fog) or plain too much going on and mind is too many places and can't concentrate.  I hope this settles for you and you can focus a little better.  
    Take care and thank you for sharing your update.
  • Strongwoman
    @powderpuff I thought I would check in.  I believe you will have started chemo again?  How are you feeling these days?  Is it having a cumulative effect on you as of yet or side effects still minimal at this time?  Thinking of you.....drop a line when you are up to it.  
    Take care  <3
  • So great to hear from you. I have just finished my 2nd round and I’m beat. After my first round I ended up with a collapsed lung and spent 4 days in the hospital. That freaked me out. This round I’m just feeling weak kind of a jet lag feeling. Im trying to stay hydrated and rest when I need it. We are up at our cottage this week enjoying the snow. How are you feeling?
  • After my lung scare I decided to cancel my bike trip  
  • Strongwoman
    OMG @powderpuff That would be so scary!  My heart goes out to you!  I bet that created a lot of anxiety at the time which would not have helped anything.  Treatment for a collapsed lung is rest.....yes?  If that isn't correct, let me know.  What happens now and how does it affect anything going forward for yourself?  Jetlag feeling---hmm would that be a lot of fatigue and heavy feeling?   I have not experienced so am guessing at best. nice, where is it located?  I bet it is so nice and cozy.  If the snow is there, it should be super quiet outside as well.  Just the crackling of a fire, tea and blanket???   Sounds lovely and what you need right now.
      I am doing okay.  I am fatigued more than normal and adjusting to it possibly being my new norm.  I don't want to accept it but am accepting that "it is" for now and I will go from there.  Obviously my body needs it.  It has booted my behind to start wrapping my Legacy gifts I have completed so that my family isn't left scrambling should something happen to me.  So that fills my days currently.  
      Canceling your bike trip must have been disappointing.  I know you were looking forward to it greatly. Have you set a new goal post that is achievable given your new norm?  Are you ready to do that yet?
      Thinking of you and you enjoy your time at the cabin.  <3
  • My recovery from my lung I think is good. I think it’s this chemo regimen that’s kicking me in the butt. Acceptance is very challenging for sure. I can’t help but feel guilty about my fatigue. I want to contribute to my home life but it’s tough. I know this too shall pass and I’ll get through this recurrence. I haven’t set a new goal for myself but I’ll put thought into that. How are you feeling about your legacy projects?  

    Here’s to fires warm tea and naps!  
  • Strongwoman
    Fatigue Meriam Dictionary meaning:
    weariness or exhaustion from labor, exertion, or stress
    the temporary loss of power to respond that is induced in a sensory receptor (see RECEPTOR sense a) or motor (see MOTOR entry 2 sense 1) end organ by continued stimulation
    a state or attitude of indifference or apathy brought on by overexposure (as to a repeated series of similar events or appeals)

     the tendency of a material to break under repeated stress

    We all experience fatigue and can relate it to many things.  The important thing is to do your best with it, listen to your body and reach out for assistance if necessary.  

    I have no doubt you will get past it all one day at a time.   Goal setting is interesting, deciding, then choosing the myriad of ones we put down to be our reachable goal.

    How do I feel about my Legacy projects?  Oh I have thoroughly enjoyed it all.  When I painted, in my mind, I was painting and creating.  Now that they are finished, they are just sitting there and to me remain unfinished until I wrap them.  The note writing can be challenging and does bring about some tears but I expect it and why there are days that I wrap none and then some I wrap more or less.  All depends.  What I do know is that when I went to Emerg last week and got the NG tube and then they were talking possible surgery, what went through my head was, "I AM NOT READY!!"  So I am laser focused on completing some of this in the days/months to come.  I will do it, one day at a time for sure.  I am thankful every day that I am able to and can do my projects.  It is very meaningful for me.  

    Well I am off to nap now as it is soon and enjoy the afternoon, ladies.