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CA125 is 2099! Time for a new CT/PET and a change in chemo drugs. :(

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

There's nothing I can even ask the Board here; it is what it is. But I wanted to share my news anyway, since my CA125 number will surely make the rest of you at least feel better about YOUR number if it's up there at all. My CA125 went up from a scary 1600 from my labs 2 weeks ago, to an even scarier 2099 on Tuesday's draw. I still got my Avastin infusion and have been taking the cytoxin at 25 ml a day, but my oncologist said yesterday to stop the cytoxin as it probably isn't working. My next CT/PET will tell the tale. ARGH.

It sure seems like my cancer is charging ahead and that the chemos I've been trying to hold it back with just can't keep up with the beast. I'm hoping they're at least slowing it down! Taxol, Doxil, Carboplatin, Avastin, & Cytoxin: all allowing disease progression. I have no idea what we'll try next: Gemzar? Topotekan? something experimental? No idea. My oncologist is trying to get me scheduled for another CT/PET and then we'll try and come up with a new battle plan.

The GOOD news, and the "take away" I have for all of you is that, even with that crazy-high CA125, I still FEEL good! No pain, no nausea. I still went out to an Italian restaurant with a girlfriend yesterday; I still work out in the garden when the weather cooperates; I eat and sleep and poop normally. And that's with no pain killers or mood elevators or sleeping pills; no "pills" at all except a daily calcium and a multi-vitamin. I know I'm probably in VERY big trouble here, health-wise, but even now I feel good. This is still very do-able.

Ro10's picture
Ro10
Posts: 1473
Joined: Jan 2009

How disappointing for you. You are giving it such a good fight. Maybe the next drug will stabilize everything. You remain in my prayers. Wishing you good news on your CT/PET with no new progression of the cancer.

Glad you are feeling so good. Being able to keep active certainly helps. Hope some of your spring bulbs are popping up to bring you joy. Glad you are able to work out in the garden on good days. I am anxious to get back to my gardens. MY neighbor sent pictures of daffodils blooming around the gardens. I can't wait to see them.

Glad you continue to enjoy life. The eating, sleeping and pooping normal with no pills is wonderful for you. I find I need pills for the pooping and sleeping. My appetite has never been bad, it seems I keep gaining weight every time I go back, and I don't like that. Even when I have nausea I can eat. Sometimes I think the eating helps the nausea.

Keep that positive attitude, but yet feel you can come here and be angry, cry, or show your frustration over what's happening. You are such a fighter and warrior that we all admire. However we know you are human and have bad days, too. We want to be here for you. Take care and Celebrate each day. Enjoy those wonderful grandchildren. In peace and caring.

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

Linda,

I'm sorry about the rise in your CA-125 and certainly hope that the CT/PET scans show that the cancer has NOT progressed. My hope for you is that despite your lack of response to the drugs you have tried so far, Gemzar or another choice finally does kick in. There are still drugs to try.

You still seem to get so much joy out of life: meals with friends, sleepovers with your grandchildren, a private vacation with your son, working in your garden and watching the gorgeous results...I am happy for you and for the fact that life seems to go on at a normal--and joyful--pace for you.

Nevertheless, I worry that you spend so much time taking care of US. Yes, you give us hope; and I love how positive you have always been. Yet, we are here for YOU, too. I hope that you can feel free to share your dark days and know that we will respond with affection and comfort.

Jill

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Linda:

Words cannot express how I feel with regard to your CA125 news.

Although you told us some bad news, you always put forth all of the good stuff. I am happy for you that you totally feel good! It is always exciting to hear of all of your adventures. Like you have said in so many ways, CA125 is just a number. How you feel and how you are able to socialize and experience so many things is such a powerful, positive that can push that negative stuff out of the way.

Sending cyber hugs your way. {{{{}}}}}}} You have to feel all of the positive vibes from everyone on this board!

Keeping you in my prayers,

Kathy

nempark
Posts: 596
Joined: Apr 2010

DO NOT EVER GIVE UP!!!! Continue to grab all the life you can!!!!!Thank God you and your hubby are enjoying a good measure of life. You have a great oncologist who I am positive will come up with a great new battle plan to keep this beast at bay or even get rid of it completely. We never know. Do we? I have a friend who was diagnosed with leukemia stage 4 and was given 11 months to live--she then started the battle to kill the beast. She refused conventional treatment and sought the help of a herbalist. She is now 16 years in remission and there are times when she feels that she is slipping out of remission and goes back to the herbalist and is given more herbs and within a week or two she back on track. I have been to see the herbalist and she did give me some herbs that really helped me with post op and chemo feelings. I don't think I would have opted out of chemo. but I have heard of many advanced cases that this woman helped. I was having serious stomach problems and I went to her and she told me that I had bacteria in the stomach so she gave me some herbs, but of course I did not put all my trust in her, so after a week or so I went to my gastro doc Paid him $600. for him to tell me the same thing that the herbalist told me so I didn't bother to use the medicine from the Doc, instead I used the hers. If you ever need to see this humble herbalist, I would be more than happy to meet with you and take you to her. what ever medicine she prescribes, if she dosen't have them in stock she recommends you to a pharmacy. Sorry Linda I just wanted to talk and talk, but you can still tell me what you think. Prayers and best wishes to all of you!!

HellieC's picture
HellieC
Posts: 458
Joined: Nov 2010

I was so sorry to hear that your CA 125 had decided to steam ahead, despite your current regimen. What a disappointment this must be to you. But despite your own challenges, you always include something in your posts to help others.
You are a beacon of positivity and I am sure that everyone who reads your posts will be pulling for you and hoping that you find another treatment to halt this beast! As has been said before - never give up!
You are in my thoughts and prayers
Helen

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

We love you Linda. You are a jewel and I am sorry you have to go through this. But I am glad you feel well. We are with you through this. You are always in my prayers. Your great attitude always puts my bad days to shame. Also, I have heard that avastin does not have the same effect on the CA 125 but have not seen any articles on it. I think that is new territory. You send us all sunshine in the midst of a storm. We love you.

Diane

Double Whammy's picture
Double Whammy
Posts: 2333
Joined: Jun 2010

Dear Linda:
What a nasty piece of news you have to deal with. I didn't even know those numbers could get so high. Thank you again for keeping us informed. As Diane says, we all love you and your positive and always informative posts. I hope you continue to feel well and you and your oncologist come up with a new course of action that will stop these cells.

Suzanne

Cindy Bear
Posts: 564
Joined: Jul 2009

Sorry about the number rising but I don't put too much stock in that number. A lot of things can cause it to rise, and it's just not reliable for all women. Even if it was reliable for you at some point, maybe it isn't now. My mom's number, before any treatment, was only a 58 yet her cancer was very advanced. Her nos. dropped into the 20's.. and you know how that story ends. Her PA told us she had a patient with a CA-125 of 23,000.. yes that's thousands, not hundreds.. and this person was doing well. The fact that you feel so good and have no SE leads me to believe that the CA is just a fluke... Anyhow, hang in there and we'll think good thoughts.
Hugs,
Cindy

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

Keeping you close in thoughts and prayers....

Laurie

susafina
Posts: 134
Joined: May 2010

Linda,
I wanted to say something stronger but this is a respectable site. I am really sorry that you are facing this. We are here for you with love , prayers and support. You will fight this and beat it .I am glad that you are feeling good. That is definitely a positive. This war is still raging and you will win. I am sure of it!!!!
SUE

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

I am so glad you are feeling well even with the high numbers. Sending good vibes and prayers for you.

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

Like others here, I am having trouble finding words. I am sending you lots of cyberhugs, {{{{{{{LINDA}}}}}}}}, thoughts and prayers.

Mary Ann

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

I'm speechless - didn't know the CA125 could go up that high! And, the fact that you're still feeling great. You're a wonder of nature! WOW!
I raise my glass to you,
Mia

hopeful girl 1
Posts: 454
Joined: May 2010

Linda,
Please feel our hugs, and prayers wrapped around you in comfort and support.
I was so sorry to read about your rise in CA125, but was pleased that you are feeling good.
That is wonderful.

You have a good medical team, and I am sure they will circle back together and come up with a brilliant change of treatment plan.

I know that this is a scare, but you are strong, and you will fight this!

Please keep us posted.

In deep caring,
Cindy

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Dear Linda,

What shocking numbers, I am awed!!!!

Judaism has several different "new years," a concept which may seem strange at first, but think of it this way: the American "new year" starts in January, but the new "school year" starts in September, and many businesses have "fiscal years" that start at various times of the year. In Judaism, Nissan 1, Passover is on the 14th of Nissan, next week,  it corresponds to Easter as it is thought that that The Last Supper was the Passover Feast, Seder.  Anyway, it is the new year for the purpose of counting the reign of kings and months on the calendar, Elul 1 (in August) is the new year for the tithing of animals, Shevat 15 (in February) is the new year for trees (determining when first fruits can be eaten, etc.), and Tishri 1, around September (Rosh Hashanah) is the new year for years (when we  the year number. Sabbatical and Jubilee years begin at this time).

Anyway, as our Queen , it seems appropriate that your New Year begins now.
Happy New Year, and may this be the year of renewed health and good news, for you and us all.

To our Queen from one of your humbled subjects,

Sara

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

Thinking of you...sending thoughts and prayers..

Laurie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank goodness you feel so good, and are enjoying so much of life, even with that stupid number. i must have missed something re: the radioembolism, what happened to that idea, or is it still in the offing?

what's to say about that absurd number? it doesn't seem possible that there isn't a chemo out there that will work for you. did you ever do the assay to see which chemos you were sensitive to and which reisistant to? i know people who have done very well on gemzar, and that's one you apparently haven't tried yet. i refuse to believe there is not a treatment out there right now that will make a big difference for you. we're still holding the faith, dear heart, so with so many of us holding you, how can you not prevail?

love and sisterhood,
maggie

RoseyR
Posts: 464
Joined: Feb 2011

Linda,

What stands out as significant to me in your latest post, despite what is objectively "bad news" is how well you are FEELING.
This can only be a good sign of a hearty and resilient constitution, and perhaps numbers are not as significant as doctors assume; their entire profession hinges on "objective data," but subjective elements (your mood, energy, capacity to function, appetite, zest for life) may be more important in signalling how well you really are.

If anyone can weather a "statistics scare," YOU can.

And we're all here to support you in any way WE can!

Hugs,
Rosey

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