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CA 125 contiues to rise

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

Went to the doctor on Thursday. The CA 125 is up to 55.2. It was 42 on the 10/29. The doctor says he does not treat numbers. He treats when the CAT scan shows something. My CAT scan was negative again. That was good news.

He said the infection pocket I had in my abdomen was from a lymph node biopsy. He said that at times fluid pockets can occur. I am not sure how it got E-coli in it though? I was going to ask him, but he was talking about something else, and I forgot to ask him. The fluid collection area continues to get smaller.

He said that some people's CA 125 will stabilize in the hundreds or even 1000's and the CAT scans remain negative. So his recommendation is to continue to observe the CA 125. I will have a repeat lab in 6 weeks, and then if it is 80-100 I will have a repeat CAT scan.

He also said if I had any symptoms - bleeding, bloating, pain, nausea and vomiting, to let him know. I told him it is pretty scary to observe, when I have never had symptoms before and I was diagnosed with stage III-C. He said , yes, the cancer is very sneaky.

He said to treat with chemo now, could depress the bone marrow, and then when I really needed the chemo I would not be able to take it. I asked if the chemo would be the same Taxol/Carbo. He said if the cancer reoccurred within 6 months of my last chemo (which was August) then he would use different chemo. He said UPSC is similar to ovarian cancer, but insurance companies will not reimburse for ovarian cancer drugs. He said he finds this very frustrating. But the hospitals will not approve drugs that are not reimbursed.

He said he felt I would need to go back on treatment in 3, 6 months or within the year. Not the news I wanted to hear, but I appreciate his being upfront with me. I do have confidence in him.

So for 6 weeks I will continue to enjoy each day. We are leaving for our Mediterranean cruise on Wednesday. We will be gone for 12 days. We are looking forward to the trip very much.
In peace and caring.

california_artist
Posts: 850
Joined: Jan 2009

Ro,

All I did was take a short nap while watching White Collar, and I wake up to this.

How did you get in trouble. Did I miss some thread entry somewhere.

I didn't even know you were having troubles.

I am so saddened to hear this news. You are so cute in you scarf and hat, how could anything bad be happening to you?????

Aren't there rules?????

Who do we ask for help?

Things are really seemingly going from bad to worse.

I think I'm going to start to cry pretty soon. I need some tea.

Do you have friends to cuddle up with for a number of weeks?

Do you think doing a puzzle would occupy your mind? Stupid question?

Love, love and lots of squishy hugs to you,

claudia

kumar
Posts: 93
Joined: Aug 2009

God bLESS YOU.\

Try to avoid sugar and drinks veg and fruit juice,Have u tried green tea

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

My heart is going out to you; standing so brave in your hat and sweater. Have a wonderful time on your cruise.

I don't understand what he means by the insurance companies won't pay for drugs for ovarian cancer? That does not make sense to me at all. It sounds like a 60 minutes story. I think you need more info on that one.

Enjoy every minute on the cruise. We are all here for you. You are an inspiration. We are truly living with cancer.

Love,
Diane

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

I've been through fights with my insurance. Their protocols are not consistent - some diagnoses are allowed certain treatments and others not. Aetna for example will allow routine PET scans for ovarian but not uterine. Hopefully, insurance reform or whatever they are calling it nowadays will make things more consistent and let our DOCTORS be the ones to decide what is best in TREATING patients.

Maybe we should all scream loudly as a united entity.

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

Ro,

Sending positive energy, thoughts and prayers your way....

I hope you have a marvelous time on the cruise...this is one of my dream cruises!!!

Take lots of pics and make lots of memories :) Keep this cancer crap out of your mind
for your vacation....

Keep us posted on your progress!

Laurie

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

I totally agree - you do look adorable in that scarf and sweater. VEry cute! Sorry about the rise in #'s. My doc did say that
the number itself isn't important. It's the jump. Unfortunately, I'm not sure if a jump of @ 10 is significant.
Maybe he means 50 or more??? I'll ask. Meanwhile enjoy the cruise. Be open to enjoyment and relaxation. I often feel like
an AA'er, meaning one day at a time - one foot in front of the other - and keep on truckin'. All the best,
Mia

deanna14
Posts: 734
Joined: Oct 2008

I know you have already left on your cruise and again I hope that you enjoy yourself and are able to put cancer on a shelf for a while.
I am just catching up with posts on the board. I just want you to know that my thoughts and prayers are with you. You are already facing what we all dread... You do seem to be handling it quite well, I guess we all have to come to some acceptance that there is a chance of reoccurance. I have faith that the Lord has a plan for all of us if we just believe!
So sorry to have been distant. I am trying very hard to not let cancer consume me or define me. Know that none of you are ever far from my thoughts and always in my prayers.
Love and Hugs,
Deanna

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

aloha Ro....glad to know you're still LIVING; so jealous of your cruising; plan to do some of that next spring; this UPSC beast is tough and early on I realized there are no guarantees, despite what my gyno/onc says (first trail study I read reiterated a 43% recurrence rate; SHOCKING); be at peace, "it is what it is"; will be praying for all my "sistas"; this is a hard time for us all with these fears of recurrence; we've shared so much knowledge and experience; we're fortunate to be able to share each others pain as well; what a fantastic group of women;

sincerely,
Marie

california_artist
Posts: 850
Joined: Jan 2009

redundant

california_artist
Posts: 850
Joined: Jan 2009

Just checking in on you to see how you are doing. How was the cruise?? I noticed you had mentioned an infection, has that finally cleared up? It must be so hard to wait for tests to see if you are well. I have read in many different places that the CA-125, that you are having elevated readings of, very often goes up due to infection or even inflammation. It's most likely that this is the cause of your's creeping up, and you test at the end of the month will be better.If it's not, try to insist on the PET/CT as it will show metabolic activity that the CT won't, since you have an infection that is hanging on, you might get an okay from an insurance company for that. Did you have the fluid biopsied, and that is how you know it's e-coli. Very odd, that.

On a happier note, I wish you a wonderful holiday, with lots of good cheer and friends.

Heart felt wishes for the best always,

Claudia

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

I had a great cruise. We went to Rome, Athens, Izmur Turkey, Cairo Egypt, and Malta. We had a day at port and then a day at sea. It was wonderful. Saw so many awesome things. I think our favorite was to see the pyramids. It is amazing to see something made so many years ago.

I was hopitalized with febrile neutopenia in June after my 4th chemo, which I got after my radiation. (I had the sandwich treatment with 3 chemo - radiation- and then 3 more chemo). I had an infection and was in the hospital for 8 days of IV antibiotic therapy (3 different antibiotics), and then another week of antibiotic pills at home. That cleared up the infection. I have not had a fever since then, so I don't think I have an infection any more.

I did have a CT guided biopsy in the hospital to drain the fluid in the area. The fluid waas cultured to make sure I was getting the correct antibiotics. That is the area they are monitoring with the CAT scans. My CA 125 was only 18 when I had the infection, and after the infection. My CA 125 has been rising since I stopped the chemo. The fluid collection area has gradually been getting smaller also.

The infection doctor said he thought it was possible that they nicked my colon when the did the robotic surgery and this caused the e-coli in the lymph node area. I guess my body was fighting it off previously. Then I had radiation and more chemo, and the body could not fight it off anymore.

I had Neulasta shots after my 5th and 6th chemo, so I did not have anymore problems with neutropenia.

The gyn onocologist said it is common to get fluid collection areas where the lymph nodes were biopsied. I did not get to ask him why it grew e-coli.

I put the cancer thoughts on the back burner for now. We had a great Thanksgiving and look forward to a Merry Christmas. I will think about it again on December 28th when I have my repeat lab done. In peace and caring.

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

Hi Ro....it sounds like you had a FABULOUS cruise. You covered a lot of area. Am sure you will cherish all of the wonderful memories. I agree, seeing sites as old as the pyramids is indeed awesome!

You are right.....celebrate Christmas and deal with lab work etc AFTER the Holidays!

Peace!

Karen

deanna14
Posts: 734
Joined: Oct 2008

Ro,
So happy to hear you had a great time on your vacation. Those pyramids sure would be an awesome site.
We too had an especially good Thanksgiving this year, and are looking forward to our 3 Christmas celebrations with family!
God Bless!
Love and Hugs!!

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

Dear Ro

Welcome back. It sounds like your oncologist is watching things closely and has a plan for you. I would love to hear about your travels. Tumor markers go up and down. I try not to ride too high or low with them.

Happy Holidays!
Diane

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