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Thread: New here... crossover from pancreas forum

  1. #1
    Senior User
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    New here... crossover from pancreas forum

    Hi. I wish I wasn't posting here, but... as way of introduction, I'm an American living near Paris (for many years), mom to 2 daughters ( almost 20 and 18 ).

    I am coming up on my 3year (next week) anniversary of distal pancreatectomy to remove a large (11cm) mucinous cyst discovered by chance. The cyst included a 3mm adenocarcinoma tumor, and was considered borderline stage 1. I did 6 months of gemzar chemo after surgery as added insurance.

    Well, a bit before the holidays, I started feeling odd intermittant pressure in my pelvis (like menstrual cramps, but at 55 I'm fully menopaused, plus no bleeding or unusual discharge). I ended up going to see my GYN, who did an ultrasound and sent me for an MRI on Friday. I have a 10cm cyst which looks suspiciously like the one I had on my pancreas. I see my oncologist Wednesday morning (he's squeezing me in between 2 patients), and he said I shouldn't be too worried, but will need surgery quickly...

    For info, I got my markers back this morning - CA125 at 47 , CEA normal at 0.6 , CA 19-9 up to 137. Needless to say I'm not a happy camper.

    Anyway, I'll be back when I have more info, but I just wanted to introduce myself. Any words of wisdom would be welcome!

    Thanks, Debbie

  2. #2
    Moderator Top User jorola's Avatar
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    Alberta
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    Hello Debbie

    First off I am so sorry I missed your post until now. My deepest apologies.

    I am also sorry you are having to post over here as well. Now sounds like you don't have a confirmed diagnosis but a high CA125; am I correct? Now i am quoting the Mayo Clinic here hoping to ease your mind a bit if I am understanding correctly.

    "A CA 125 test isn't accurate enough to use for ovarian cancer screening in all women because many noncancerous conditions can increase the CA 125 level. Many different conditions can cause an increase in CA 125, including normal conditions, such as menstruation, and noncancerous conditions, such as uterine fibroids."

    So hope that helps. If you don't have a confirmed diagnosis I will move this thread into the forum as per norm but I'll wait for your confirmation first.

    Best of luck and keep us posted.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  3. #3
    Senior User
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    France
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    Hi. Sorry it took so long to get back here. So,after PET scan confirmed activity, I was operated Feb 2nd - total hysterectomy, ovaries and omentum (which had spots), along with the 14cm cyst ... the relative good news is that other than the cyst and the omentum, the other organs were all clean.

    They analysed the adenocarcinoma tumor in the cyst and determined it was identical to the pancreas one from 3 years ago (which apparently had an ovarian stroma around it -a rarety). However, they cannot be sure if it is secondary or an identical primary form.

    So, I am back with my pancreatic oncologist, and just starting my 2nd cycle of gemzar/xeloda (cycle = 3 weeks on, 1week rest). The first cycle was cut short by a week as my hemoglobin dropped too low. Definitely feeling exhausted and had lots of diahrea... Xeloda dosage cut from 1500mg morning/1300mg evening to 1500mg morning and evening, and they may lower it further depending upon the anemia.

    One thing which really took me by surprise was how long I took to heal from the hysterectomy... it's been 2 1/2 months and sneezing is still painful. I've only recently been able to stop all pain meds... definitely harder surgery than the distal pancreatectomy I had in 2014!

    Anyway, that's my update... still not sure which board I belong on... so I guess I'll lurk on both!

    Debbie
    Fall 2013: large cyst found on tail of pancreas - by accident
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015: NED
    May 2015: NED, Port removed
    Nov 2015: NED
    June 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - 14cm mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes all clean
    Mar 2017: start gemzar/xeloda protocol ( 3 weeks on, 1 week rest). ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger. Continuing gemzar/xeloda protocol ...

  4. #4
    Moderator Top User jorola's Avatar
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    So sorry Deb, I have been away! I am sorry you slow healing from surgery. Oh how painful those sneezes are. I remember and I have allergies!

    Well I hope they figure things out and that the chemo on top of recovering from major surgery - as remember that is MAJOR surgery - is not too hard on you.

    Please feel free to post on both. You are most welcome here and again sorry I was away for a week there. I left the day before you posted but I am back now!

    Oh and don't feel bad about the pain meds if you are feeling bad if that is. Like I said major surgery. Listen to those restrictions. I didn't and paid for it....dearly. Don't be me!!!!

    Speedy recovery!
    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

 

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