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Neurotic Newbee

jawjab's picture
jawjab
Posts: 6
Joined: Jan 2014

Long story short, in 2011 I had a hysterectomy, everything taken out was cancer free but I had microscopic cells. This happened one year after my husband died.   My CA was 33.  Had seven treatments and my CA went down to 6.  I was in  remission for 1 year 2 months.  CA was 77 so I started chemo 10-2-13.  I had two treatments of  Taxotere.  The doctor switched me to Doxil. My CA went down to 44 after two treatments of Taxotere but now after two treatments of Doxil  my CA is 88.   Since taking Doxil my fingers feel like sausages and when I bend them they burn.     

I was told that I had an aggressive cancer.  What I still do not understand when I started chemo again the cells were once again microscopic and there were only two cells on the cat scan. 

After hearing that my CA increased to 88 yesterday I was and still am petrified.  I am 71 years young and I always wanted to live to 92.  The doctor told me that I could continue chemo until I wanted to stop. At the start of the second round he did say that this was a recurring cancer and now it is aggressive.   I still cannot believe this is happening.  All I did today was live in a blown up anxiety.  I was wondering why I was dizzy - guess what I didn’t eat.  DUH.

I live on a farm and raise sheep.  Friends of mine have their seven baby pigs in my pigpen.  They pay for the feed and I do the feeding and fresh water.  When they are grown my payment is a pig ready for the freezer.  I do keep busy but all I can see now is not being able to do anything.  Just sitting around ready to die.

I don’t mean to sound morbid but I am at the bottom of my barrel.

I had a wonderful attitude about this cancer journey vowing I would not let it kill me.  Maybe I am just going through a bad time and will bounce back tomorrow.  

Just a short ps I did start reading quite a few other sites and when I was telling my doctor about them he said I was only allowed to go on the American Cancer Society site so here I am.  Also for fun I bought eyeball stickers and I put two of them on the back of my head and have had a ball wearing them.  I truly do have eyes on the back of my head.

Bald is Beautiful!!!!

 

 

Thank you so much for listening.  

NoTimeForCancer
Posts: 435
Joined: Mar 2013

You have brought up so many points but let me begin by saying welcome and, while I am sorry you had to come here at all, you will find there are many extraordinary women here. 

I am a visitor from the Uterine board but the Ovarian sisters are fantastic and I know they will be chiming in with all their support soon. 

I suspect we all are terrified when we hear our CA number rises but take a breath and don't focus on the number.  It sounds like you have so many wonderful things to be focusing on, so get the treatments and back to living!  Take a nap when you get tired.

I hope you don't take this the wrong way - this is all written to celebrate YOU!!!!   

 

jawjab's picture
jawjab
Posts: 6
Joined: Jan 2014

Thank you NoTimeForCancer.  You brought tears to my eyes because you are the first good thing that happened to me all day.  You helped  to refocus me the way I was before.  I guess I am just having a P.L.U.M day - Poor little unfortunate me".  I thank you so much.  Nothing like a few words to have me put the numbers on the back burner, way back.  

Alexandra's picture
Alexandra
Posts: 1207
Joined: Jul 2012

If you're allowed to go to only one website on the internet (I can't imagine why), CSN is the place to be with understanding, compassionate and like-minded people. You can come here when you're down and will always find a warm shoulder to cry on. And you can share happy times with us. An it does not have to be cancer-related. Everyone here is or has been bald at some point, so what?

You sound like a very strong, witty and independent "young lady". Not someone who would sit around having a pity party for herself. Cancer recurrence sucks, maybe even more than the original diagnosis. But life goes on, there are other chemo and trials and it's not over till it's over.

To introduce myself: I'm 46, diagnosed with ovca 3C in May 2012, hysterectomy, chemo, 9 months in remission, recurrence in Sep. 2013. Still very much alive and kicking.

Many hugs and warm wishes,

Alexandra

lovesanimals's picture
lovesanimals
Posts: 1237
Joined: Sep 2011

You've come to the right place for information and support.  I'm sure it's disheartening to see that your CA 125 is slowly rising but if Doxil isn't working, then there are plenty of other options.  Here's hoping that each day is a better day for you.

By the way, I love your eyes in the back of your head! Laughing

 

Hugs,

Kelly

Rosamond M
Posts: 86
Joined: Apr 2013

What a clever doctor to tell you of this site where this awful disease

brings us together and the mutual courage,strength,caring and support

helps us cope. We are all on this complex track at various spots along the

way,  the different perspective,thoughtful posts and opinions keep us close as

we realise we are not alone in dealing with our questions. Your sense of

humour is a wonderful asset and your "eyes at the back of your head" is a most

imaginative way to deal with a worry that we all shared during our treatment.

Living with uncertainty is tough,even beyond tough,but you certainly are a lady

who can deal with "tough"!Sending you an enormous friendship hug.

Rose.

 

scatsm's picture
scatsm
Posts: 237
Joined: Apr 2013

I can only echo what others have said, this is the place to be if you are unlucky enough to be part of the club that no one wants to be a part of! We have a pretty good time here, for the most part. I haven't met anyone on this board in person, but I feel I am getting to know many of them in an intimate way. I count them among my friends, and many times, the people on this board are WAY more compassionate and understanding than the people in my life who have moved on from the initial "crisis" of diagnosis/treatment and believe I am just fine. 

This is quite a life changing journey, but a journey it is, and having people who truly understand and are cheering you on is a gift!

All the best,

Susan

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

You have come to the right place! Your story sounds very familiar to me. I was diagnosed 5/2006, 3C, about 3 years remission. I have been on chemo for 4 years this month. My ONC calls my disease cronic, but I'll be a 8 year survivor come this May. You can do very well on long term chemo, the trick is finding what works for you and being able to tolerate it over the long haul. You sound like a tough gal and boy, do we all have those anxiety filled days! This is the place to come on good days and bad.

                                                    ((((HUGS & Welcome)))))     Maria

jawjab's picture
jawjab
Posts: 6
Joined: Jan 2014

I appreciate each and everyone of you that have left me "feeling good" posts.  I was doing so good until that dang CA went up.  After reading your posts and other posts on the discussion board I really do not have it that bad.  The mind is a terrible thing to waste and I have really been wasting it these past couple of days.  I am going to put on my big girl's panties and move forward with a smile - thanks to all of you.

 

Bald is beautiful,

J

seatown's picture
seatown
Posts: 217
Joined: Sep 2012

Have been reading your posts and the replies over the last few days and wanting to comment -- so I finally will. I share your concern about rising CA-125 numbers. My CA-125 reached its lowest point of 15 last summer and now is 44 -- the first time it has been above the normal range in nearly a year. I too have been very concerned. What I wanted to share is this: my gynecological oncology surgeon on Thurs. told me to stop obsessing over it. He said, "I've had patients with a CA-125 count of 3,000 who had endometriosis, not cancer!" Of course you and I know that endometriosis is not an issue in our situations. And I have also been told I have an agressive cancer. I think the message is -- have faith, and keep at it until you find the right drug to give you the right result.

The reason I didn't reply sooner was that I went for a CT scan on New Year's Eve and got results on Thurs. I've been preoccupied with all of that. FYI, I have primary peritoneal cancer, which is treated just like ovarian cancer. My doctor on Thurs. suggested a course of "benign neglect" for the next 90 days, though I'm taking a new drug orally. We'll see what happens. If you are interested in my details, I've been writing about them at www.CaringBridge.org/visit/CaroleSeaton

Best of luck to you, and Happy New Year!

Carole

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