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2 Years NED, but wait for results was awful!

anicca's picture
Posts: 335
Joined: Dec 2010

First, let me say a celebration is planned!

I just had my 2 year check up yesterday, with blood work in the morning before the exam. No CT this time, as I had one in Jan. I've been having terrible gas and a few other GI symptoms, none specific to OVCA, but making me crazy anyway. The doctor and NP seemed to think things looked good. I have always gotten my CA 125 results the same day, late in the afternoon, but yesterday, no phone call! I hardly slept, and this morning around 11, broke down sobbing, thinking they were waiting to call me till plans for further tests/treatments could be made. I finally called them and waited about half an hour for the return call. By the time I got the call, I was ready to melt down again, and nearly started crying on the phone. CA 125 is 11.5. It's been between 12 and 9 since I finished my 6 rounds of chemo in Sept 2010.

Of course, I am thrilled, but I have also already called a GI specialist to get to the bottom of my gas problems. I need to fix it so it doesn't make me think cancer all the time! I have been so stressed that I've gained 10 pounds, and have probably made the GI trouble worse with overeating and eating very fatty foods.

Now for some more good news! I told the NP about my stress and anxiety (which quite surprised her - I put on a good show), and she thinks I'm a perfect fit for a study to treat anxiety in cancer patients with a combination of psychotherapy and psilocybin, a psychedlic drug. As I was quite a pot head in college, this totally cracked me up. The study coordinator called me right away and did the prelim screening on the phone before I even got home. The doctor in charge is calling me Thursday. I really hope I get in, as it will give me someone to vent my worst fears to, since I can't really lay them on my family. Results from similar studies have been excellent, and it's all FREE!

kikz's picture
Posts: 1347
Joined: Jun 2010

you FINALLY got your good news. It is awful to wait. I always have to wait 2 days to get the result and finally decided to just wait the 10 days it takes to come in the mail. I just hated making that phone call. My last result tripled to 23 so I have to have another on June 10th. I am doing okay with the wait; hoping and praying it will go down. If it doesn't there will be a Petscan. I will be freaking out when the June 10th gets closer and for the time it takes to get the result. I am so hoping I am still in remission. I feel really good, no symptoms that I notice.

Have you talked to anyone, like a therapist or support group? I saw a thereapist when I finished treatment but really have been able to manage my fears pretty well on my own. I did attend the support group that went along with the Living Strong/Living Well Program I attended in 2011. As a member of the Y, I can still attend but haven't felt the need to.

I had my last chemo in September of 2010 too. I have felt so good all this time except for some bowel issues which seem to be ususal for all of us.

I hope you get accepted into the anxiety study as I am sure it will help you a lot. I was a young woman in the sixties who never smoked pot or did anything else. When I was in treatment I wondered if a little pot might not help me out!

The best to you and again I am so happy for your continued remission.


PS: I think you and I are on a parallel course. I first felt sick in January of 2010 although my primary had asked me about my hard stomach in October of 2009. I was diagnosed on March 16, 2010, had 3 rounds of chemo, surgery on May 21, 2010, then 6 more rounds of chemo. I hope I continue to be parallel with you and stay in remission.

anicca's picture
Posts: 335
Joined: Dec 2010

I think you've had a harder time of it thus far, Karen, but the timing is very close. It's wonderful that you've been NED all this time also! I did smoke some pot after my first round of chemo, because I wasn't taking the best anti-nausea drug. It really helped a lot, but after I got my legal meds figured out, I didn't need it anymore. I wish they would legalize it already!

kimberly sue 63's picture
kimberly sue 63
Posts: 421
Joined: Apr 2012

good for you ... go for it and enjoy!! You deserve it considering your long journey. Kim

lovesanimals's picture
Posts: 1364
Joined: Sep 2011

on finally getting the good news, Anicca! I hope that you get into that study - sounds very interesting and you can't beat free! Please be sure to keep us posted. I myself have been on an anti-depressant for anxiety, panic attacks and mild depression for about five years (June 2007). I was diagnosed with cancer in September 2010 and have been NED since March 2011. I'm so glad I'm on medication; without it, I think my anxiety alone would have been unbearable throughout this cancer journey.

Take care,

anicca's picture
Posts: 335
Joined: Dec 2010

Thank you, Kimberly Sue & Kelly.

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