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Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

I have read these posts a lot over the last 9 plus months, thank you so much for all of the information you lovely sister warriors have posted, you have been my lifeline.  I was diagnosed with UPSC in September, had a hysterectomy in October, began 6 rounds of carbo/taxol in November, 38 rounds radiation in January (32 external pelvic IMRT and 6 brachy).  I finished all treatment March 5 and am going in for my first follow up visit June 11.  I will have a full body cat scan earlier that day, and an anxiously waiting for the results.  I had a blood draw for tests Friday, got the results yesterday, and, I just had to share with you all that my CA 125 hovered between 9 and 10 during chemo, yesterday’s number was 7.  I cried tears of relief and could easily cry now, if I let myself.  I know this is now definitive, I 

still have to wait for my cat scan, but I feel hopeful now.  I have tried to remain optimistic throughout my treatment, but as you all know, it’s hard.  I finally feel like maybe I’m going to be ok.

Now, a bit about my diagnosis and treatment.  My pathology came back as 1A with no lymph node involvement, but with LVSI.  My chemo was bearable, no nausea (thanks to infusion of anti nausea meds and oral meds at home).  I did have quite a bit of bone pain after about 3 days, I was pretty miserable during those days, but after a week, I pretty much returned to normal and had 2 good weeks before my next infusion.  I began with a bit of dullness in my fingertips after my first infusion, but it was not too bad.  I now have neuropathy in my feet that’s better some days than others, it seems to be getting slightly better.  My hands have not changed, just a slight dull feeling in my fingertip. 

I began radiation treatments in January, they ran concurrently with my chemo.  I was severely fatigued during this time, sometimes sleeping most of the day.  I experienced diarrhea a bit further into treatment, but, immodium took care of most of the problem.  I began to recover a bit of my strength in a few weeks.  I am trying to rebuild my stamina now, by walking a mile and riding my bike a mile several days a week.  I have a long way to go.  Hair is coming back, it’s about a scant inch long.  I can’t wait to have a pixie cut and dye it brown, again.  I’m too young (68) to have gray hair, ha.

Thanks for reading such a long winded post.

Linda

 

 

 

 

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1517
Joined: Jun 2015

Welcome Linda. Glad you posted to join us. Please come back and let us know how the scan and check up goes.

Love and Hugs,

Cindi

Donna Faye's picture
Donna Faye
Posts: 228
Joined: Jan 2017

Things sound good for you and we all get than scan anxiety. I am 14 mos. out - all going well - but scan times my BP begins to climb. One word - noticed you had 6 bracky - did they tell you and give you dilator instructions?  My docs did not tell me right away so I had some problems. Do ask them if they have not. 

Keep exercising and you will get stronger every day but let yourself rest when needed. We are strong warriors.

Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

Donna Faye,  I did get dilation devices and instructions, thanks to the women on this board.  After my last visit I asked about them, “oh, nobody took care of that for you?”  No, so what do I do?  The nurse set me up and gave me instructions.   Three times a week.....forever. Ugh.  If I hadn’t asked, I don’t know when it would have happened.

Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

Donna Faye,  I did get dilation devices and instructions, thanks to the women on this board.  After my last visit I asked about them, “oh, nobody took care of that for you?”  No, so what do I do?  The nurse set me up and gave me instructions.   Three times a week.....forever. Ugh.  If I hadn’t asked, I don’t know when it would have happened.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2562
Joined: Mar 2013

I hate to hear that doctor's offices staff don't follow through on things.  I remember getting very upset with my radiologist and flat out told him, "This may be everyday for your staff, but I assure you this is not everyday for me!"  

I am so glad everyone was able to help you from their experiences. 

EZLiving66's picture
EZLiving66
Posts: 1327
Joined: Oct 2015

Hi Linda! I'm glad the chemo and radiation are behind you but, yes, those scans can cause a lot of anxiety. I was diagnosed with UPSC in October of 2015 after a total hysterectomy in September of 2015 - Stage II. I only made it through three chemos and no radiation, but, so far, it has not returned. My CA125 is not a good marker for me and my oncologist/gynecologists did not believe further scans were necessary unless I had some kind of symptom but I still get nervous when I see my doctor every six months. 

Please let us know how your tests go!

Love,

Eldri

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2562
Joined: Mar 2013

Linda, I can only imagine the fatigue you had!!!  Holy cow.  I would say you and your body have been through a lot, so be kind to yourself and allow yourself the time - and it takes longer than we all would like - to make the recovery.  

Please let us know if you have questions come up in your survivorship and how the scan goes.

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

Welcome Linda.  It's nice to come here and talk to women who understand what you are going through.  You can read my story on my blog.   I have no symptoms to report to my gynecologist.  She does not do CA 125 for me.  I still feel the emtions returning from a year ago when faced with the unknown and everything I read online.  I have always been on 6 month checkups.  So far so good.   

Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

I pray that you have a great follow up visit.

zsazsa1
Posts: 310
Joined: Oct 2018

Linda, welcome.  It sounds as if you were diagnosed around the same time as me.  There are others, too, on this board with the same diagnosis, in the same time frame, and we have all received different treatments.  We've all been given chemo.  But for the radiation, we've all received different recommendations - some just brachy, some external beam without brachy, some external beam with brachy.  And I don't think that any of us were entered into a clinical trial.

I'm happy to hear you're recovering.

Armywife's picture
Armywife
Posts: 276
Joined: Feb 2018

Welcome, Linda!  I have also learned SO MUCH here.  Glad you are with us.

Northwoodsgirl
Posts: 515
Joined: Oct 2009

As I read your post it brought back many memories for me. The anxiety around imaging and labs lessens with time. 

You have endured much and are a survivor! You will be amazed how much better you will feel with each passing day. 

 Peace and Light, 

Lori

Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

Thank you all for welcoming me and giving me your support.  We go in for my first post treatment cat scan and 3 month follow up visit with my doctor.  I didn’t sleep well last night.  But then, you all know how that is. 

Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

Went to see my gyn oncologist today for my first 3 month checkup after treatment, he said my bloodwork, cat scan and physical exam were all perfect today.  Praise God.  I go back in 3 months, second scan in another 6 months.  We stopped for margaritas on the way home, then, a nice nap (I didn’t sleep well last night).

Forherself's picture
Forherself
Posts: 168
Joined: Jan 2019

I am very happy for your good news.   it is such a relief.   May you continue NED.   

ConnieSW's picture
ConnieSW
Posts: 1426
Joined: Jun 2012

glad you celebrated with a margarita. 

Dmont0703
Posts: 12
Joined: Apr 2018

Hi all. I'm not sure if anyone is still posting on this thread.  I'm now post one year from finishing chemo. I had stage IIIC UPSC.  I followed with both internal and external radiation. I've been NED since December but at my 3 month check this week my CA 125 had risen slightly. Still in normal range but only 10 points off from being concerning.  Has anyone had this happen?  I'm still dealing with after effects of radiation (irritable lower digestive tract).

You are all so inspring! I'd appreciate any words of wisdom!

Quilter_1's picture
Quilter_1
Posts: 34
Joined: Mar 2019

I don’t have any information for you, I have only had 1 follow up visit, I hope someone else is watching.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1517
Joined: Jun 2015

CA125 was never a good marker for me. Mine was in the normal range WITH cancer. It came in at 22.  It shot up to 90 post surgery. Then back down into the 20s after my first chemo. It slowly went up into the low 30s for about 2 years post treatment. 8 months ago it was down to 10. My oncologist had decided not to do any further CA125 tests on me. There are so many things that can make it jump up. Even a cold can impact your numbers. Try not to worry too much. 

Love and Hugs,

Cindi

Ribbons's picture
Ribbons
Posts: 73
Joined: Jan 2019

All I can tell you is my Dr. said any kind of inflamation in the pelvic area can raise your CA 125 numbers, so maybe you irritated digestive tract is doing that, good question for your Dr.

Armywife's picture
Armywife
Posts: 276
Joined: Feb 2018

My CA 125 was only measured twice, before and during chemo. Once it was 14 and the second time it was 15.  My surgeon said it's not a reliable marker for me, and often not a reliable marker for endometrial cancer - better for ovarian.  Still, many ladies here have had a correlation.  Try not to worry.  

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