How do you know?

I have stage 3b high-grade serous papillary adenocarcinoma diagnosed in Feb 09. I have a great gyn/onc who felt that all visible disease was gone following the surgery. We had planned IV/IP 6 cycles but he was unable to insert the IP port due to adhesions so I ended up with 6 cycles of IV carbo, the first one with Taxol and the remainder with taxotere due to an allergic reaction. After the first cycle (the one with Taxol) my CA-125 dropped from 24 to 16. Five treatments later it is 12.6. (I was at 210 prior to the surgery). I had my followup CT and will see the doctor again on Friday. It has been 4 weeks since my last dose of chemo.

My question is this. The CT is clear and the CA-125 is at 12.6 (abt the same as prior to the last treatment) and that all sounds great BUT for the past two weeks I have been nauseated with indigestion and this constant watering mouth. This is exactly what took me to the doctor with what turned out to be ovarian cancer! I have had these symptoms consistently every day, I wake up with and go to bed with them for about 2 weeks now. Are these symptoms the first sign that I'm in trouble? And if so, how long will it take until you would see an increase in the labs and I can stop worrying? I am scheduled for another full set of labs in a couple of weeks.

Thanks in advance to anyone who can shed some light on this for me.

By Jennali
Posted August 26, 2009 at 8:56 pm
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Try not to panic yet. With a clear CT scan and a low CA125, my non-professional opinion is that you are probably fine. This hypervigilance is an unfortunate offshoot of a cancer diagnosis. We tend to think every little thing is the cancer coming back. I am not criticizing you. This is all too common.

Have you tried some OTC remedies like Tums or Zantac? I have some acid reflux. It is especially bad if I lie down too soon after eating. If your symptoms become severe I would put in a call to the doc. Otherwise, I would be observant and wait til your Friday appointment. By all means make your doc aware when you see him/her.

Hope it gets better.

By lifeisgrand
Posted August 26, 2009 at 9:38 pm
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Thanks for the response. I am trying to stay calm and I guess just nervous about the upcoming follow up with my doctor. I was fine through the whole diagnosis, surgery and treatment and now the whole thing is overwhelming me. I know I will feel better after I see him. He has such a calming effect. If he's concerned then it will be time for me to be concerned too. I have been trying Zantac but it hasn't helped. Same as before... vague but persistent symptoms which don't respond to treatment. I've been getting out for some exercise and trying to begin my no longer in treatment life. School started today so now there will be other things to focus on and get out to sporting events and things, around people. I think I need that.

By verlinda
Posted August 26, 2009 at 10:18 pm
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Dear LIfeisgrand,

A month after I finished chemo, I began having coughing spells (usually around 1:30 p.m.; my sixth-period class became accustomed to my coughing, racing to the girls' restroom at the far end of the hall to vomit, then returning to teach the rest of the class) daily. I didn't have nausea or hurtburn, just would cough until I vomited.

I just knew I had lung cancer! A wise chemo nurse nailed it. My reflux had been so aggravated by the chemo that it was triggering the coughing attacks. They sent me to my regular doctor (wonderful physician's assistant) who prescribed Carafale, maybe Carafase, syrup three times daily in conjunction with doubling my reflux meds. Within a few weeks, I was able to drop the syrup. That ended that problem.

This past May, I began seeing a naturopath just because I felt I still had so many toxins in my body. I can't tell you how much the gentle detox pushed out of my colon! Since then, I've been taking natural supplements and feel tremendously better. I'm down to one acid inhibitor a week!

I think the most nerve-wracking time is the first several months after chemo. For the first time since the suspicion of cancer, you're not doing something to actively fight the cancer. You've been so geared to pressing on, that it's scary to think there's nothing to do but watch. These feelings will get better; I promise.

Let us know how your next visit goes!

Blessings.

By Patricia123
Posted August 27, 2009 at 7:44 am
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I had the same bloating/gas after I finished oriignal treatment that I had before diagnosis,,and it was extreme. Then pain in my upper abd which scared me half to death,,it bored thru to the back.

Turns out it was my gall bladder,,I iknow I have big stones and sludge,,they saw it on CT scan.

But I went on an almost zero fat,,less than 10 or so grams a day,,and all symptoms cleared. Plus a good marker reassured me.

Now I wonder if what in retrospect looked like ovca syptoms was all along gall bladder. Praise to the gall bladder if it was otherwise I would still be harboring the ovaries and all their mischief.

Every new symptom scares me and at 67 we all get new symptoms. I think from now on I will get a marker done,,it seems to be good for me, and get reassurance that way.

By lifeisgrand
Posted August 27, 2009 at 8:35 am
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Thanks ladies. You're helping to keep me grounded :). I just need to get through one more day and I'll be on my way to the doctor. He'll put me on the right path. It's actually been 11 months now since I first visited my PCP with the symptoms I now have again. If this is unrelated to the cancer I will be surprised since I had every test and there was nothing physically to account for the symptoms. I would love to just take a pill and have it go away but that also didn't work for me before. Had I not been having the watery vaginal discharge at the same time that prompted the ultrasound of my pelvis when they were doing the one of my abdomen to look at my gallbladder, they never would have seen the "cyst" which at the time was dismissed as functional and not to worry.. just repeat it in two months. All the while we continued to diagnose and treat my GI symptoms. I was treated with two different reflux meds that didn't help. I was given anticholinergic pills to help the bloating (dx with IBS) that didn't help. I was told by the gyn that the vaginal discharge couldn't possibly be coming from the cyst. I was told by the gastroenterologist that the cyst could not be causing the GI symptoms. Duh... a month later they took the thing out and all the symptoms went away. I hate to have to start down that path again. Whatever it is seems to be affecting my mucous membranes, the watering mouth and my nose is also dripping a watery substance that isn't really like a cold or anything just kind of runs out now and then. Don't have any vaginal discharge like before but well they took all those parts out. I've never seen these symptoms listed so maybe I'm just odd. None of it makes me extremely ill or in any kind of pain, it is just annoying and a low level not feeling well. I can function through it and make myself eat in spite of it. Will let you know what he says. Thanks again for the help.

By joah2
Posted August 28, 2009 at 3:11 am
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Goodmorning from Holland,
At this moment I am in the same position I think. 2008 OV cancer with debulking and chemo. Some years ago my galblatter was removed. All lab results were good in april but still often abdominal complains. The onc says, Ca125 is alright and that is where we based on our plans.
Since a week I do have indigestion and have the same strange feeling at the right side of my abdominal.
This is where I went a severeal times to my doctor in 2008. Everytime I got some pills, sometimes for my stomic, sometimes for my guts. I was send to an gastro-entorologist to examen my guts. But nothing occurs.
Then half a year later I went to my doctor with the same complains and ask for an ultrasound. My daughter who is a nurse told me so.
He agreed and then the bal was rolling, OV Ca.
So now I am afraid that the same thing is going on. I have control in the hospital in oktober and will wait till then, because it does,nt matter for a month. But always there is this fear, is it coming back!
I wish you all strength. We have to live with this.

By lifeisgrand
Posted August 28, 2009 at 7:55 am
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You're right Joan. A month isn't going to make a difference. It's not like we're having a heart attack and need to get to the ER straight away. We've got to sit around and wait on the little bugger to show itself! So... what to do in the meantime so my mind isn't always thinking about this.... I think it's time for a trip to Germany to see my daughter. She's there for a year and well if I put it off until the spring who knows where things will be. Best to live the good life now while things are stable :).

Good luck to you also. It seems every day here there is good news and bad news. Sometimes it just makes me want to cry for all of us. And pray.

By verlinda
Posted August 29, 2009 at 11:49 pm
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Ladies,

Another thing to consider is scar tissue. My gyn oncologist told me it takes up to a year for our bodies to heal from the surgery.

Also, I don't know about y'all, but I lost every hair in my nostrils. I have allergies, so during prime allergy seasons, there was nothing to dam the mucus flood!

My PA and I both thought I was having major gall bladder attacks after chemo. When summer came, I finally had time to do the diagnostic imaging. I turned out to have a gall bladder working at 80+ percent efficiency. It was nice to know I had at least one healthy organ!

I've already told how increasing my reflux meds helped with the vomiting. What I may not have told you is the story of the fairly severe pain in one spot of my rib cage that had my PA and I so worried. It turned out that the very expensive bras I'd treated myself to after cancer surgery were evidently pressing on some nerves. One week all my nice, new bras were dirty, I was exhausted, and so I wore my old bras instead of washing my new ones. The pain vanished! May all your problems be so easily and humorously solved!

By esther3kids
Posted August 30, 2009 at 1:17 am
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Dear lifeisgrand,
Today is saturday, if your appt. to see your doctor was yesterday, I hope that everything went well for you. If you still haven't seen your doctor, I wish you well, and I will be praying for you.

I hope that you will be able to make that trip to Germany to see your daughter.
Good Luck!!!

Love, Esther

By lifeisgrand
Posted August 30, 2009 at 9:25 pm
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Yes I saw him on Friday and as soon as I got home from my 150 mile round trip to Pittsburgh, had to get in the car for another long drive that had us away for the weekend. Am just getting home.

He said everything looks great. No sign of any cancer on the scans and the CA-125 was 12.1. He recommended that I go back and see the gastroenterologist because even though there was nothing found last fall that doesn't mean that there is nothing there now. It is highly likely that the chemo may have caused an ulcer that is acting up. Was hoping to be done with doctors for awhile but I think I will see the gastro guy and see what he says. Maybe something a little stronger than the Zantac will do the trick. In the meantime will enjoy NOT having cancer :)

Note to self.... don't worry until there is something to worry about!

By chaka64
Posted August 31, 2009 at 8:20 am
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I am so happy for you. I am having my CT scan tomorrow and see the MD on Sept 8. I have been doing everthing in my power not to worry about the scan results. Even drove to Southern Ohio for the weekend. I am going to try to live by you note to self and not worry until I need to.

By lifeisgrand
Posted August 31, 2009 at 9:43 am
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Chaka... I think it is easier said than done! But the one thing I am grateful for is having found this forum. I realize now that there is sort of a right of passage at every stage. First we get to the diagnosis.... frightening. Then we live to tell about the surgery.... no one understands except the ladies here (well maybe my husband as he had to physically take care of me for the first time in our over 30 years together). After that the chemo starts and all the concerns over what is normal and how awful will it be. Then we get where we are now... that period of time where the disease is gone, but not the fear. My people in the real world don't understand it. They think the treatment is over so now everything is fine. The truth of the matter is we all need each other. For when the little grey cloud that follows us opens up and rains on our parade. The ladies here are at all the different stages. There's someone who has been there before to hold our hand and get us through it. We in turn are here to help the ones coming up behind us. And as sad as it is, we watch with broken hearts as people we only know from sharing this common bond move on to the final stage. Sometimes it is overwhelming. Other times it gives us hope. Through it all we know that we are not alone.

Good luck today with your scan. I hope it all comes out squeeky clean!

By crolly
Posted August 31, 2009 at 2:12 pm
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I can not shed any light but i have a simular situation, My chemo stopted in May this year the doctor wants me to have a rest after nearly 9 months of carb/taxol, i have been put on tomoxifen to hold the cancer. This week i have had the old feelings of being bloated, pain in my groin and a feeling of being totally wiped out.

So i am now in a panic i will see my gp this week to ask what i should do or is this a common thing ?.

By lifeisgrand
Posted August 31, 2009 at 4:09 pm
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I think it is a strange new world we find ourselves in. I am used to the place where you eat right, exercise, see your doctor for preventative care to keep illness away. Now it seems like a crap shoot. You know it's back when it's back.

By verlinda
Posted August 31, 2009 at 9:31 pm
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Lifeisgrand,

There are some really good acid inhibitors that will be much more effective than the Zantac.

Let us know what happens.

Blessings.

By lifeisgrand
Posted September 2, 2009 at 1:23 pm
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I went to my PCP today thinking he'd give me some acid inhibitors. No he did a thyroid study and a Rx for Zofran. I think he is uncertain what to do with this after the chemo and hoping that my oncologist will address it when I see him in two weeks. In the meantime, let's try this.

So now the question, has anyone had chemo-induced thyroid problems?

By lifeisgrand
Posted September 3, 2009 at 10:48 pm
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It turns out to be my thyroid.... geez.... got a call from the doctor's office this afternoon. Guess that might explain all the sweating and racy heart that I had just chalked up to menopause and being out of shape after all the surgery and chemo. Now i've got to go get a thyroid scan. What's it going to be next?

By lifeisgrand
Posted September 17, 2009 at 10:47 am
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Okay... three weeks has passed. I'm still waiting on my thyroid scan as they wouldn't do it since I had just had a CT scan with contrast two weeks earlier. I'm scheduled for next week. Still have the GI problems. Also my heart beats like a race horse without warning.

I saw my oncologist today for my 6 week follow up. My CA-125 has gone from 12.1 to 16.6 in three weeks. He's not concerned because it is "in the very normal range". Trying not to panic. He'll see me again in two months. I did talk him into repeating the CA-125 next month when I have my port flushed. Right now all I'm feeling is ... oh wait I shouldn't say those words out loud!

By lifeisgrand
Posted September 22, 2009 at 8:44 am
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Another update even though I seem to be talking to myself. AT least I can keep track of things if I write it down somewhere....

Had a lovely breakfast of radioactive iodine... haha... will have the thyroid scan this afternoon.

The indigestion continues in spite of the three horse pills (Carafate) I'm taking every day. Doctor asked me to try it for at least two weeks so two weeks it is. Sick of belching from sun up to sun down. Funny thing is it does not bother me at night. Of course the nightsweats and racing heart beat manage to wake me about 3am every night. Hopefully the thyroid scan will answer some questions about that.

By lifeisgrand
Posted September 26, 2009 at 11:11 am
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Well it appears that my suspected hyperactive thyroid is actually hypoactive. What the heck... Again no answer... we will "monitor" it. Well how you going to do that when you haven't even done a complete thyroid panel. Now I'm going for a stress test to see why my heart pounds at the slightest activity. Sometimes I think he's just humoring me until the cancer proves to be the problem and then it's not his problem. In the meantime, I made a call to try to be seen by an endocrinologist... he'll review the studies and let me know if he'll see me... but of course our first available appointment is after Christmas.... that's three months. Some days I think it might be best to just suck it up and realize that yes I have cancer and yes it makes you feel like crap and no there is nothing you can do but to deal with it.

Welcome to Inspire!

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