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Bleeding as a symptom of a recurrence

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

I started this thread, not because I have a real opinion yet, but because I will soon, and want to get the discussion going.

As many of you know, I am currently on a tenuous break from chemo, following a SURPRISE clear CT/PET I had in mid-February that was supposed to let us know what was going on mid-way through what was originally going to be 20 rounds of weekly taxol for a suspected recurrence. (Chemo given at 1/3 strength but every week.) So after just 10 of the planned 20 rounds, my gyne-oncologist felt I could (and should) safely take a break from chemo. 8 weeks into my chemo break I had a routine CA125 drawn (because my port needed flushed anyway) and my CA125 dropped 8 points on its own without chemo, down now to 34.6.

Then I started having a pinkish tinge on my toilet paper every 7 to 10 days, never any blood on my underwear or running out into the toilet or anything, and then days and days of NOTHING, but just this worrisome 'pink' every 7 to 10 days. I told my chemo-onc and he said they'd keep an eye on it, but didn't seem concerned. Then it got to be about every 4 or 5 days I'd see something pink, and 1 day last week I had an actual small spot of blood on my underpants. This morning when I urinated, it was red when I wiped. And when I used my dilator this morning there was a drop of blood on the very tip of it when I withdrew it, so I know the bleeding is vaginal. I phoned and made an appointment for Monday for an internal exam. Prior to all this I'd already been scheduled for a CT/PET on May 17th and an appointment with my gyne-onc to review that scan on May 24th.

So, since some of you that are in remission may one day find yourself with spotting, I wanted to get a thread started so I can let you know what I find out. The oncology nurse reasurred me that this could very easily be a result of fragile tissue from radiation damage, which sometimes occurs long after bracy or external radiation. Or it could be something worse. She said that maybe the exam would allow me to put my mind at ease until the CT/PET. I hope so. It was hard not to cry when I saw that blood this morning.

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

You have remained in my prayers, and I pray that all will go well with your PET scan on Monday. Hope you enjoyed your relaxing day, and you could enjoy and admire your gardens. I too hope you remain in remission and can have an enjoyable summer without treatments.

Do you still have such discomfort with the position your arms have to be in for the scans. I hope that is better with the PET scans.

I know I thought I would have to go back on treatment last fall, but was able to enjoy the winter without treatments. I too am hoping for a treatment free summer. I go June 1st for my next lab and CT scan. I read the other day on a Cancer site that a cause of elevated CA 125 can be CAT scans. I had multiple scans last summer to follow up on the abscess in my abodomen. Then I have been having CAT scans every 6 - 8 weeks because of rising CA 125. I wonder if those CAT scans are attributing to my slow rise in the CA 125? Just wondering out loud. Will ask the onocologist when I see her in June.

Wishing you well on Monday. In peace and caring

clscurnutt's picture
clscurnutt
Posts: 26
Joined: Nov 2009

It springs eternal with all of us. My thoughts are with you tonight and will be with you tomorrow. We all hold you in our hearts.

Speaking of gardens, this is the first summer in many years that I've worked on what we plant in our garden. It's another life affirming activity that's so necessary in our journey. Every time we go to the nursery or the home improvement store, I'm now on the lookout for something unusual to add to our new collection of plants. And I find plants to rescue in the 50% off rack. So much fun!

Lynn

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

My Zen is sometimes wacky. And then there are times when I feel like all is right with the world. Like yesterday, the birds were having a United Nations meeting at the feeder. Cardinals, sparrows, grey mourning doves, red-winged blackbirds posturing for position. So much fun to watch. And then suddenly a painted bunting showed up. If none of you have ever seen one it looks like someone took a sparrow and used their paint box to recolor him. Purple, green, red markings make him distinctive. I rarely see the buntings here in Southeast, Texas and took it as a sign that all is well. So, dear Linda, I hope your visit goes well. You are like the painted bunting. A rare and wonderful creature. I so enjoy your writings, filled with humor, intelligence and your unique view of the world.

I will be praying for you and sending a huge {{{{LINDA}}}}.

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

I loved your very descriptive writing about your birds....so vivid I could picture your birds...especially the painted bunting. I don't think they live in Kansas but I will keep my eyes open!

I love watching the birds at my feeders too.....they are so entertaining! AND I finally saw my first hummingbird of the season! A bit late, but we are having very cool weather lately.

Am thinking your Zen is just fine!!

Karen

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

Dear Karen, Thanks!! I wish I could shoo that bunting your way, honey. The hummingbirds are late here too. I think it was the unusually cold winter. Hard to believe those tiny guys fly all the way across the Gulf of Mexico to migrate. Sending you a big {{{hugggggg}}}.

Linda, I am on pins and needles today while you get your scan. Thinking of you.

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

love hearing all those descriptions of birds in everyone's neighborhoods. right now, we have a nest of mourning doves on our front porch light fixture! the mama has been there constantly for the past week and a half, just sitting motionless on her eggs. it's possible, though i haven't seen it myself, that papa may be taking turns on the nest with her since it does seem like there could be two birds taking turns . in any case, it's such a lovely reminder of spring and life.

linda, i am, with others, thinking of you especially today, and hoping for the very best outcome of your scans. i know you'll let us know when you know. in the meantime, try not to worry too much.... (easier said than done) i have my first post treatment scan next week, and it's very nerve wracking, though i'm hoping for the best, but preparing for the worst.

sisterhood,
maggie

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

Thanks, everyone. I had my CA125 drawn and my CT/PET done, so that much is over. But I didn't get any results yet.

It helped a little to have my pillow along and tucked under my arms for the scan, and that took a little pressure off that pinched nerve or whatever it is that hurts so much when I'm in the machine. I didn't cry this time at least! But it really did still hurt and was like an endurance test before the scan was over. My hands and arms go NUMB when they are over my head like that. But it's over now and I am home so no use dwelling on such a small thing. My belly is upset from the contrast and I have a little headache because I missed my morning caffeine (I know! I know!). I called to see if I could get my CA125 and it is there in my file, but they said they would have to have my oncology nurse call me with it. So I wait.

I am guessing I will have to wait until Thursday morning for my scan results, as they have already set me up with an appointment with my chemo-onc to review the results. I'll keep you posted. Thanks again, everyone.

faith316
Posts: 25
Joined: Mar 2010

Linda -

I am relatively new to this board and seldom post but read almost daily to stay up with all that is happening with all of you in your journey. Briefly, I was diagnosed with ULMS in November, 2008 - have been through chemo (gemzar&taxotere) and radiation. Still areas of concern showing on lungs and liver - just had a PET/CT scan last Friday and will visit with OB/GYN/ONC on Wednesday this week. I was wondering..have you ever requested to keep your arms at your sides during your scans? The technicians that have performed my scans put small boards (used like shelves) under the pad and allow me to keep my arms at my sides. Last time, because I am slightly claustrophobic (spelling?) he put me through the machine head first instead of feet first. He also stayed in the room during the PET portion of the scan and talked with me through the procedure. After the CT when I went on into the PET he stood at the top of the machine and layed his hand on my head so I could get a reference of how close I was to actually being outside the end. I can not believe what a hugh difference it made. I pray for good results from your scan and next visit with the doctor. Waiting is so difficult. Gods peace as you continue on your journey.

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

Linda:

I am glad your scan is over. Rest and get some caffeine! lol. I hope all goes well for you at your appointment. I go for my PET Scan next week, so I know how you feel!

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