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Back home....tired and still NED

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

My CT scan was termed "good" by Dr S and the radiologist, although I have some "ground glass" in one lung that they think is the result of being intubated during my hernia surgery and a "small" amount of ascites, which they also attribute to the surgery. My CA125 had gone down a point (to 18), so I am still on the vaccine clinical trial train.

We've lost 5 so far, from the study group, due to recurrence.

I go back in January. Not looking forward to that - ice and cold wind and all that white stuff....yuk!

My daughter went with me this trip and she is a lot more adventurous than my husband. We stook in line at TKTS and got half price tickets to see Brooke Shields in The Addams Family. Great show, and my first Broadway show ever!


carolyn45's picture
Posts: 100
Joined: Apr 2011

Marvelous news, Carlene. You're holding strong in NED, and that's what counts. Can your daughter go with you again? I'll bet she loves being able to support you this way.

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

Actually, I think she loves free trips...LOL!

I'm a little worried about the ascites. Dr. S thinks if it were related to a recurrence, my CA125 would not have dropped. Who knows?


pattysoo's picture
Posts: 172
Joined: Oct 2010

Just curious....how many were originally enrolled in the vaccine study? Congrats on the good scan. It's always a joyous time to get good news.

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

Patty....it's a small study group, but I don't know how many have been recruited. I was the second or third.


jbeans888's picture
Posts: 313
Joined: Mar 2011

This is great news! I am very happy for you I know it is a sigh of relief for a little bit. At least you get to travel to NY. Being from NJ I love NY and know it very well. I am not sure what part you go to but there is a great artist I love, his name is Alex Grey and his studio is down town by Chelsea and his stuff is really great. Seeing it in person will blow you away. You should google his name and you can see his paintings. They are all oil based and are huge! He has this series called the Sacred Mirrors and it is a series of 19 paintings that are huge and they tell a story from pre-existance to the after life and they are just mind blowing. I really suggest you go see them if you ever get a chance. Congrats on being NED still. :-)

kikz's picture
Posts: 1346
Joined: Jun 2010

I am so happy for you. I love good news.


lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

I'm so glad you are still NED, Carlene. You have battled so ceaselessly to hang onto your remission and you truly deserve it. Glad you had fun!

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

JB....the study is out of Memorial Sloan-Kettering in midtown Manhattan.

I would love to see the paintings. Maybe next time I can find his gallery. Everytime we go, I get a little braver. LOL


carolenk's picture
Posts: 909
Joined: Feb 2011

Who used the word "ascites"? You or the doctor? There's always some fluid in the abdomen/pelvis. If your weight stays stable & you don't have bladder symptoms or bloating, you could relax...well, maybe worry less?

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

The radiologist's notes/report says "small amount of ascites."

I am still working on losing the weight I gained during chemo, so that's not an indication of anything. I have lost 8-10 pounds in the last 3 months.

Bladder symptoms in old ladies are just a part of life. I have a bladder the size of a peanut, to begin with, and I have carried four very large babies.

Me? Worry less? You have to be joking.

My daughter told Dr. S's PA that she thought I was depressed. Sandy asked me, "How long have you been depressed?" and I said, "Oh, about two years."

carolenk's picture
Posts: 909
Joined: Feb 2011

I just wonder if you hadn't had the history of OVCA attached to your chart, might the radiologist have used the words "small amount of pelvic fluid"?

Here's another thing to think about: lymphedema. After the a debulking surgery, the lymph vessels are disrupted to the point where they will never be able to drain the pelvic fluid like they once did.

Congratulations on dropping weight. I remember your post where you shared your height with us & I think of you like a Bantam chicken now--small but feisty. On a small frame, every pound really makes a big difference so good for you, Carlene!

Hissy_Fitz's picture
Posts: 1869
Joined: Sep 2009

When I was diagnosed, I was trying to lose weight - one reason I didn't think the whole "feeling full" symptom was a bad thing. I thought it was my amazing will power. Ha!

After surgery, and almost 3 weeks on TPN, I dropped about 35 pounds. Even after I was released from the hospital, I had trouble eating and my weight continued to drop. I could not believe that for the first time in my life, I wanted to leave my jacket and shoes on for the weigh-ins at the doctor's office!

Then came chemo, and steroids. I gained a ton of weight. After I decided I wasn't going to die in the next six months, I started working on taking it off. That was a lot harder than putting it on had been. Imagine that.

My closet is stuffed with clothes that are either too big or too small. I retrieved a bin of winter stuff from the attic a couple of weeks ago, so at least I won't be naked. And I bought a pair of jeans. One pair. I don't want to get too comfortable in a size 10. Most of my clothes - and all my cute clothes - are a 6, and I'd really like to wear them again.

I am not short. I am fun-size.


AnneBehymer's picture
Posts: 739
Joined: Jul 2011

I am so glad to hear you are still ned how long have you been in remission. This is all new to me so when I found out that I was in remission I now find myself worring about the cancer comeing back. I am still in my first line of treatment and I am worried about it comeing back what is wrong with me I should be injoying being cancer free but I just can't do it. I think part is because it came so fast that it is hard to believe I will stay that way. Is this your first remission? I will be praying for you that you stay in NEDS and that you will lose the weight.


Barneygirl's picture
Posts: 90
Joined: Sep 2011

Wonderful Carlene. NED is always great news!


Posts: 1995
Joined: May 2003

Super news, Carlene! Enjoy it!


Posts: 1223
Joined: Jun 2008

I love the sound of that word, Carlene! Glad you also gots some great mom-daughter time in NY.
You have been a true fighter, and trail blazer.

clamryn's picture
Posts: 508
Joined: Jun 2010

That is so wonderful. NED, NED, NED... Keep it up. I am lovin' it.


Cindy Bear
Posts: 570
Joined: Jul 2009

Carlene. It sounds really good. I am so happy for you. I'm glad you were able to enjoy the trip and work in some fun things!!!

poopergirl14052's picture
Posts: 1185
Joined: Nov 2010

trips continue to bring you good news...ned..Take it and run. Enjoy feeling great and holiday time is coming. I have started shopping early.I want to deorate like nobody's business and bake and cookand be with family. Last 2 holiday's I couldn't. I am happy you saw a show and explored the city. Rest up now..busy days ahead..val

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LaundryQueen's picture
Posts: 682
Joined: Mar 2011

This is good news & it doesn't surprise me that you are doing well. Thanks for being willing to do the clinical trial even though it is a pain in your "fun-sized" behind to travel to NYC for all the testing. Vaccine therapy could become mainstream therapy for many of us.

I really, really appreciate you & your family.

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