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CA 125 going up

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

CA 125 going up

Well, My CA 125 has been slowly going up and I am scheduled for PET scan. I was just enjoying being off chemo so much and I've got plans for the wedding going great guns. I planted my flowers for two weekends and felt so good to finally get in the dirt. I reveled in spring and feeling well.

I found out right after I got my wedding dress alterations in. I finally had let myself feel the excitement of the wedding. Now I probably won't have hair. We cried together last night, hubby and me. I gave it my best shot with hipec; the results will go to research.

My CA 125 has been accurate for me. It has never gone up and then gone down. I just needed my sisters to hug me. How do we do it, going up and down with our emotions and hopes? I think I am strong and then I find out I am still weak.

Hold my hand and give me strength.

Diane

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Sorry to hear about you Ca 125 going up. Keep focusing on that upcoming wedding and the excitement of it. I was hoping you could remain out of treatment for much longer. I am sending you a BIG CYBER HUG and squeezing your hand tightly. Hang in there. Take one day at a time. Glad you could cry with your husband. It is good to let those tears flow. Glad you got to play in the dirt. It has been too cool and wet to put in any annuals yet. Maybe this weekend. Don't give up hope. Remember that you are strong. You are another of my inspirations. In peace and caring.

Cindy Bear
Posts: 570
Joined: Jul 2009

to hear about the rise in CA, because as you say it's been quite accurate for you... Big Cyber Hugs coming your way and prayers and well wishes and hand holding...
Hang in there, I can tell you're a very strong person and let us know what's going on.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I have been wondering about you and intended to write.

It's hard not to get discouraged when "the NED bubble" bursts. DARN. Hang in there, my friend. Is your doc concerned? I will not monitor my CA125s just for this very reason - the stress and anxiety of negative anticipation.

On the plus side, these last month have allowed you to build up your strength for another battle which I believe you will win.

Please keep us posted. The low dose chemo + radiation worked for my recurrence - check with your doc aobut this option if tx is needed.

Much love to you, Mary Ann

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

ARGH! I'm so sorry that your blissful remission has this cloud of doubt over it now. You didn't say how MUCH your CA125 went up. A spike? Are they talking about a CT or PET to see what's going on? I can see no advantage for rushing into chemo until you have a more definitive recurrence diagnosis based on more than CA125 alone. When is the wedding? Maybe you can hold off until afterwards. Take it from me, sweet one, rushing to get into chemo and leaving behind your remission is not the way to go if you can safely put it off. Please wait and see what the scans say. Remember how Ro handled her slowly rising CA125? That's what I recommend. Hang onto your chemo break as long as you safely can, and unless your scans show visible cancer or you are experiencing undeniable symptoms, I'll bet that you can safely enjoy remission awhile longer. (((Diane))).

I know you are heart-broken after you made such a BIG MOVE with such high hopes. I'm seeing an interventional radiologist today to try and make my own BIG MOVE, and I go into it with the same high hopes that you did. You give me a glimpse of what disappointment can look like and it hurts to see it. You are STRONG, Diane. Deep breath. Just wait for the scan results and try to find your Zen again in the meantime. I'm so sorry to have this cloud over your happy wedding-planning time. Call me if you want to talk. You will work your way back into the happiness of living in the 'now.' I know you will. (((Diane)))

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

That sucks and I think crying is appropriate. I love your strength and ability to deal with things as they come. Even though I don't think any of us have met, there is a level of care and love that is shared within the group. Here's hoping you feel it, and it radiates warmth within you, but it still really sucks that the numbers are up.

Love and hoping for better days,

your friend in cyberspace,

Claudia

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

I just see you among those gorgeous flowers in the picture, I'm sure you will look great in your Mother of the Bride dress! The Queen will not go hatless to the Royal Wedding!

Hair, fiddle, when NED trips you have helped him up for us all, you are strong an will dance at the wedding!

Sara

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Emergency PET is scheduled for Friday. (that's what radiology called it)I know I really don't know what's going on yet. I don't have pain (except a little in fingers and toes). I agree Linda, I think this time I need to wait until my body is stronger. Yes, it's so hard when the bubble bursts. I was just having fun being a housewife again! I shop and run through the malls! Started reading with a strong mind and writing too.

Thank you for telling me I am strong as I really feel so weak. I did not let them tell me my CA 125 until it was a problem as I really wanted to enjoy this break and when I'd go for port flush, I'd go, "oh my god, I am a cancer patient!" I am with Mary Ann in that hearing the number all the time is sometimes like riding on an emotional roller coaster.

I will make the wedding and wear a queen hat; is that a tiara? Do they stay on wigs? Thank you for the giggles.

I have also read about PARP drugs with chemo and they sound promising but not out yet.

Most of all thank you for being me with me when I needed you. You are amazing women. If only we could all meet and be together.
Love You,
Diane

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

My car is running and insured. It's a miracle.

You're in Califonria?

I might have to take a plane for that one. would love so much for us to get together, all of us. Might just be the collective energy needed to cure us all. Wonder if that would work.

Love and heart strings to you,

Claudia

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hey, Diane,

Why don't we go for a ride this weekend whether permitting. It is a great way to welcome spring. They finally finished the DQ you know!!!!!

:):):):) All my love, Mary Ann

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

Really.... that's the first thing that came to my mind. I didn't expect this - so soon - and after you've worked so hard against it. But..... you'll keep going strong. You'll plant your flowers and watch they rise up and who knows? Just keep going!
Much love, and thinking of you always,
Mia

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

As all the other ladies said, Diane, you are strong, but hearing news like that just means that you and your body needed to take a moment. All the advice, from Linda, Annie, Ro et al makes so much sense. I love the analogy of the tea bag! Don't jump into treatment immediately if you can hold off to enjoy your wedding.
Thinking of you
Helen

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Diane, you are strong! Remember, we are like tea bags, we get strong when we get into hot water. But don't panic and put the cart before the horse. The rise in ca125 may mean something is up but you don't have enough info to take that leap to those 'bad hair-less' days. You may not even be in the chemo range. I know that awful feeling when you hear that number. It sure takes the wind out of your sails. But stand tall and catch the breeze so you can sail thru the wedding. How far away is it? Even if chemo is on the agenda, many second line drugs don't cause hair loss. And Linda is so right about not rushing into to treatment too soon. If it is just now at a notable level to get scanned you probably hve time for all the joy of the wedding.
Sending big bear hugs to you!
Annie

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Gosh Diane it's such a joy to hear how you endure your life with/without the cancer. This cancer stuff isn't always working in our favor, therefore you need to pull up your big girl pants and keep on fighting the good fight...I know you can do it!!

Keep that beautiful smile on your face and everyone will know you're a winner~

Best to you always,
Jan
((( hugs )))

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Of course you are not weak- just very human and very brave to be so honest with your feelings. I'm holding on as we give each other the strength we need. What are you planting next Diane? We started a new raised bed this week for the herbs. I can already taste the pesto.
Barb

susafina
Posts: 134
Joined: May 2010

Diane,
I agree with everyone this really SUCKS!! Diane you are so strong. I know this because you really helped me and gave me strength and courage to get through some crappy times. We will all join our hands to send you all the strength you need. Continue to plan the wedding. We will attach a beautiful tiara to your wig.
Much Love,
SUE

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Holding your hand and sending you a cyberhug. Norma

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Thank you for picking me up out of the dirt and dusting me off. Your words of encouragement help so much. I feel your cyber hugs. I prayed to my Dad last night to give me some strength too. There's something about having a place to collapse safely and cry. It happens here for me. Can you all come to the wedding?

And Mary Ann,

I've got my kayack out; its been in storage too long. But, gulp, I've been to the dairy queen!

Your dearest friend,
Diane

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Diane,

I was so sorry to hear about your rising CA125 and know this is very disappointing to you. Hopefully the PET scan will provide more specific (and good info). Delaying any treatment until after the big wedding is certainly an option. I am glad that you have been feeling good and enjoying all of the hustle and bustle of getting ready for the event.
By the way, when is it?

Being frightened and shedding tears is not a sign of weakness. You are certainly not weak!! We are here for all of the sisters on this board, just like you have always been... so strong, thoughtful and helpful!

Enjoy your newly planted flowers, get your wedding dress on, and comb your hair....you have important things to do!!

Big hugs, Karen

Double Whammy's picture
Double Whammy
Posts: 2803
Joined: Jun 2010

Dear Diane-

Just echoing what everyone has said and wanting to let you know I'm sending all my hopes and prayers and positive thoughts your way.

Best wishes, hugs, etc., etc.

Suzanne

Kaleena's picture
Kaleena
Posts: 1781
Joined: Nov 2009

Diane:

Reaching out my hand to you. Sorry I just got your post. We lost electricity the other day due to an accident. Then my sons were using my computer.

There is a lot of stuff I would like to say to you but I have a hard time putting it to words, so I am just sending you a hug (((DIANE))).

Sending you positive vibes.

Kathy

nempark
Posts: 683
Joined: Apr 2010

Diane: May our great creator of this universe give you the strength, energy and wisdom to face this journey. Be well my friend and enjoy the wedding!!! Can you feel the hug? Close your eyes!!! and feel the squeeze. June

hopeful girl 1
Posts: 454
Joined: May 2010

Diane,

I think you are a very strong woman and you have helped lift my spirits as well (as others mentioned above) with your encouraging words during my treatment last year.

Every single one of us understands the fear of the dreaded CA125 number.
I wish for you strength, and faith in God, to guide you through this latest journey.

Perhaps the rise is attributed to something else-stress, even happy stress, for the upcoming wedding.

As mentioned in the other posts, we all care about each other deeply and are friends even if we have never met in person, the connection is there. We will all be there with you in spirit and caring as you go to your next doctor visits. Feel our warmth and caring wrap around you in comfort.

Cindy

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Thinking of you and sending hugs and prayers...

How was your week?

Laurie

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