I'm in real trouble now: CA125 almost doubled even though I've been getting carbo chemo. :(

LPack

Linda
Linda,

I just got on this morning and read your message. I too agree, there are more options. I have been on carbo, taxol, gemzar, cisplatin, hexalen, and now doxil.

I am praying for a chemo that will work and that they can give you enough to keep you going. I am on a lower dose of doxil because of my bone marrow. I have always had bone marrow difficulties since first time around in 2008 and have never gotten to finish any of my regimes.

I will also be praying that your blood counts stabilize. I am so glad you feel GOOD! You are a fighter, Linda.

Love you,
Libby

mopar

DEAREST LINDA
I'm so sorry - that's certainly not the knews that anyone would want to hear. But there's still hope, especially since you're feeling well, that it's not what it seems. We all hold our breath till we get those numbers, and I know they have their place in this whole picture. But my numbers recently rose as well and I remember that it's happened before and was probably due to other factors, as it came back down again. Praying that your next text will prove the same, and that the CT/PET is showing NED! I will pray long and hard, Linda. And, like you, I wait until I have more info before I usually tell everyone. It's enough to bear the burden of possibilities yourself, let alone 'speak it' to someone else right now. You'll know when the time is right, and hopefully you will have better news to tell by then.

Sending lots of luv, (((hugs))) and prayers,
Monika

Christine B.

Linda, You are in my thoughts
and prayers for some good news coming your way. I wish this will help, at least just a little bit,your strength and attitude have been an inspiration to me.
Christine

Lisa13Q

Dear Linda
First off, can I say I'm sorry without sounding patronizing. As someone who does not have this disease, I often feel out of place here, because frankly I just can't truly understand the journey. At the same time, as someone who dearly loves my mother who is fighting this nightmare, I hope at times, I have a perspective that can be helpful. This is NOT the beginning of the end. Your doctors will tell you when that time comes, and you will know too. You will have symptoms and you will feel crappy. Although your doctor's statement was alarming, s/he was honest and I don't think you can ask for more. My mother's liver tumor grew over 1.2 inches over x-mas...the doctor was "worried" and told us it was the cancer and not the chemo that was making her feel terrible. It sucked. The reality is sucky. AND you can deal with it. I cried for 2 weeks, I am a professor and missed my first class (I just plain got the time wrong). I left a $20 bill with a 16 year old cashier who wouldn't let me get away with 10.00 in change for a 10.01 cent charge...I walked out and told her where she could go....now she's 20 dollars richer...IN our heart of hearts, we all know what is happening, so does your family. But you musn't give up hope. You feel fine. That's a blessing. Maybe you don't need to tell your family much, because the reality is you truly don't know much except that the number went up....I'm not trying to minimize here, but this disease has a way of taking over when it truly hasn't taken over. Let's say, though, for the sake of argument that it's what you say, ok, well then....take back control. You are an intelligent and inspiring woman, you knew this day would come at some point.....Take control....of what you can.....My personal example is this: I know my mother is dying of this beast...I don't know if that will be this year or next, but I know... I will NOT let that day destroy me....which up until now, I've though it would...I have spoken with my mother and I am going diving in South Africa with the Great White Sharks with her blessing....she promises me she'll be with me....OK, so for you, your journey is NOT over, don't let that f..ing CA-125 number rule you....what do you want to do for the next year, month, day? Go do it....Your husband will move through his sadness and disappointment and so will your family....and so will you....I hope I haven't made a complete and stupid fool of myself in this post....I don't even know what I'm trying to say....but you are wonderful and I hope some part of this makes you feel a teeny weeny bit better...

hopeful girl 1

Lisa13Q said:

Dear Linda
First off, can I say I'm sorry without sounding patronizing. As someone who does not have this disease, I often feel out of place here, because frankly I just can't truly understand the journey. At the same time, as someone who dearly loves my mother who is fighting this nightmare, I hope at times, I have a perspective that can be helpful. This is NOT the beginning of the end. Your doctors will tell you when that time comes, and you will know too. You will have symptoms and you will feel crappy. Although your doctor's statement was alarming, s/he was honest and I don't think you can ask for more. My mother's liver tumor grew over 1.2 inches over x-mas...the doctor was "worried" and told us it was the cancer and not the chemo that was making her feel terrible. It sucked. The reality is sucky. AND you can deal with it. I cried for 2 weeks, I am a professor and missed my first class (I just plain got the time wrong). I left a $20 bill with a 16 year old cashier who wouldn't let me get away with 10.00 in change for a 10.01 cent charge...I walked out and told her where she could go....now she's 20 dollars richer...IN our heart of hearts, we all know what is happening, so does your family. But you musn't give up hope. You feel fine. That's a blessing. Maybe you don't need to tell your family much, because the reality is you truly don't know much except that the number went up....I'm not trying to minimize here, but this disease has a way of taking over when it truly hasn't taken over. Let's say, though, for the sake of argument that it's what you say, ok, well then....take back control. You are an intelligent and inspiring woman, you knew this day would come at some point.....Take control....of what you can.....My personal example is this: I know my mother is dying of this beast...I don't know if that will be this year or next, but I know... I will NOT let that day destroy me....which up until now, I've though it would...I have spoken with my mother and I am going diving in South Africa with the Great White Sharks with her blessing....she promises me she'll be with me....OK, so for you, your journey is NOT over, don't let that f..ing CA-125 number rule you....what do you want to do for the next year, month, day? Go do it....Your husband will move through his sadness and disappointment and so will your family....and so will you....I hope I haven't made a complete and stupid fool of myself in this post....I don't even know what I'm trying to say....but you are wonderful and I hope some part of this makes you feel a teeny weeny bit better...

Linda
Linda,
I am so sorry to hear about your CA125 number. I am sure that is very scarey.
I think as all of the other posters mentioned, the fact that you are feeling good, must mean something. Has the CA125 always been a reliable indicator for you-can that reliability change the longer treatments continue?

Perhaps as someone mentioned, you may becoming immune to the taxol/carbo-I believe I have read that can happen.

I hope that your scan on Monday does not show any big changes. Perhaps something else is making the CA125 go up.

I think your oncologist unfortunately used that wording because he cares about you-and he was giving it to you straight-that he was not happy about it either. I think that is best, a straight shooter-who cares-and that means he will look to find the best treatment for you.

Hang in there....keep the faith.......

Keep us posted what you find out.

Cindy

nancygt

PET
First, I hope I did not overstep bounds by updating the ladies on the uterine board to check here. You are such an inspiration there both in attitude and good information and I am sure that at times that can be a burden when you really need to be angry,frustrated and maybe vent or just wallow for a while.
I go back and forth between the two boards because my onc actually refers to my USPC as stage 4 Ovarian. I know he knows better but he reminds me that it has far more in common with Ovarian than non USPC endometrial. Like you I am negative on other factors (and similar time frames that I have posted before), so I follow your posts with interest.I just had to have a second PET scan in 2 months and my doctor handled it for me-I worry about June as I have to go on medicare after 2 years of disability and how things will change-they include Ovarian onthe approved cancer list but not Endometrial and I understand there is an exception process to fight . But my CA 125 doubled in late Oct, we did PET scan mid Nov with new tumors around lung and other areas.We held off on chemo until after first of year as my onc really wanted to use Cisplatin combined with Adriamycin and there were shortages -still have a hard time believing that. If shortages did not resolve, we were going to use single agent Doxil-but I really wanted the combo since certain studies show over 50% efficacy if one can tolerate it(alos my second opinion doc at MDA said she agreed). My blood values held up reasonably well on the initial Carboplatin/Taxol with the aid of neulasta. We both felt I would never be stronger to tolerate these drugs than now and we were able to start Jan. 20th.I never thought I could feel such joy to get drugs that could be so hard to tolerate. The first one was rougher than my first carb/tax but I am starting to feel human after 10 days (used to be 5 or 6).I know there is a cumulative effect but I am trying to go one day at a time-I am somewhat willing to be the bouncing clown doll a former boss accused me of being at work-knock me down to the floor and I bounce back up grinning-I have even thought about shopping for one to whack at as I took it as a compliment then and would try to make it a role model now. Ha!ha!
One thing my doc told me was that if we decided to wait 60 days on the drugs, we should not test Ca 125 as it was likely to continue to rise and we would do a baseline the week before chemo along with a new PET and a MUGA. I agreed and surprisingly I have not even asked about the prechemo reading yet.With a 8 treatment regimen,it will matter more later. He did tell me that while mine has been a good indicator, the he is not so much concerned about number jumps when we know it is growing. He did go over the PET scan with me and I am glad because I really would have freaked in some ways. They counted 20 tumors near the base of my lungs and that was hard to hear. But the SUV rates while in cancerous range clearly did noy go from 8 to 15 like they did at my first recurrence in a 5 week period last year.None of the tumors is very large and none are in organs like liver but I am glad to finally be on treatment.So hopefully they can get your PET scan done and give you some additional perspective - while not great it did help me.
I also might suggest reading the Ovarian Cancer Coalition website as there has been a lot ot posting lately about combinations of chemo-Gemzar,Avastin,Vinelbine and others that are showing results in keeping cancer in check. And there are several ladies there that quit responding to carboplatin that had tissue assays that pointed in a different direction there when they had planned to continue the Carboplatin or repeat taxol.I know there may be a battle with Avastin with your insurer but maybe some of those fights are ones we can start a discussion on and pool research and resources.
I know when you are low it is hard to look for inspiration but I will suggest a post I made titled something like Helen for hope a few weeks ago. When I inquired about Cisplatin/Adriamycin, I got a response from Helen as she had that treatment years ago(back when they put you in the hospital for it). She had survived with one recurrnce for 16 years and is at 23 years now and very active on Ovarian Cancer Coalition.There are people who make it -somebody has to be that 20-30% and why not you or why not me? My new rallying cry for bad days is "Remember Helen".
And one last tidbit-I just finished Gilda Radner's It is Always Something and consider I read it "chemo week" I really enjoyed it. I felt a bond as she went through the months of Cispl/Adria routine. Certainly I won't have a suite where my movie star husband sneaks my dogs in to the hospital but she was so funny and human that I could not put it down.It also makes you realize how far things have come in 25 years and how much things can still change.And I may not fly to the south of france on my between chemo weeks like she and Gene Wilder did but I may fly to California and drive the coast in a convertible and eat croissants and stare at the ocean,feel the sun, feed birds or whatever -even if I have to wear a mask to coddle my immune system.Right now I am going to go sit on a lounge chair in the sun (covered up a bit of course) but 70% and sunny sounds lovely and I am going to bounce up grinning for a while before I am knocked back down to the floor again.

Ro10

Linda I am so sorry to read this post
Linda sending you a BIG HUG. I can't imagine the feelings your are having. I am so sorry about your great increase in the CA 125. It makes me feel so bad for you. Sorry you could not get the chemo this week, but it will give you body another week to recover from the other treatments.

I pray that your CT/PET gives you some encouraging news. I pray they find a chemo that will stop this for you.

I am so glad that you still feel GOOD. Hang in there and know that we all care about you and are here for you. You have been so strong, but sometimes crying does help to release what's inside.

I hope you get to spend some time with the grandkids to help distract you. In peace and caring.