Recently Diagnosed; looking for connection and hope

[Sarah Crocker]

Who knows how long things had been brewing inside of me - I had a sense that something was off for a couple of months because I was experiencing occasional bouts of extreme fatigue, as if my body was fighting some kind of infection.  I would have to lay down during the day and sleep for several hours; something I had never did or needed to do before then.   I would schedule a doctor's appt but then feel better so I'd cancel it.  Finally, a week after my 60th birthday I showed up at the doctor's office complaining of abdominal bloating and discomfort as well as significant pain in my lungs.  I knew something was 'off'; for 60 years I'd been fit, active, eating well and in good health.  

After too many diagnostic tests to recount, only 2 things were clear; I had several pulmonary embolisms in my lungs and, I had enlarged abdominal lymph nodes.  A final procedure (lymph node biopsy) verified that cancer was present however because no tumors were found I was diagnosed with CUP (Cancer of Unknown Primary).  At some point there was mention of my CA125 which was a mere 790 but high enough for my doctor to decide on going with a carbo/taxol treatment plan administered weekly for 6 cycles or 18 weeks plus.  At the end of treatment (end of February) my CA125 was <6 and after having an immediate transfusion of red blood I was beginning to feel vey well... until I had my 2nd follow-up where I learned that my Ca125 is now up to 15 in just 5 weeks or so.  During this time since I've stopped chemo, I have also taken a penetratingly hard fall, slamming my back which I only mention because it seems to have brought up many of the same discomforting symptoms that I was experiencing in the beginning as a result of this cancer.  At this time, in short, I am quite terrified with the reality of having this cancer which seems to have such a poor prognosis.  Are there any survivors of PPC who are alive to share, I wonder, there are so few posts at this site.  I would welcome hearing from any of you who have experience with this disease.   

[diane...@gmail.com]

Hello Sarah, I was 54 when I was dx with primary peritoneal cancer in May 2011. My CA125 was 1190. I had  major debulking surgery  and was in the hospital 3 weeks. I then had 6 rounds of chemo Taxol/Carbo my Ca125 went down to 42. I see my oncologist every 2 mo. my CA 125 has gone up and down these past 2 1/2 years. I am doing well now and get to see the oncologist every 3 mo. now. Yeah! I know that the prognosis is very poor ...but you never know we are all different and only God knows when are time is up. Look at me, Dr.s only gave me 3 to 6 months! There is hope ! and remember you are not alone.

God Bless.

Hope to hear from you! Your Friend, Diane

[Sarah Crocker]

Thank you so much for being in touch Diane and for the reminder that only God knows when our time is up.  My faith seems challenged as my body struggles to recover post chemo, which ended for me in late Feb.  The fall I took 5 weeks ago plus coming down now with what seems to be a flu/bug really has me down in the dumps, particularly during this time when I'm free of chemo treatments and had hoped to be getting back on my feet.  I guess I'm still confused as to how PPC is diagnosed if not for a biopsy.  Did you have any tumors present at the time of your diagnosis?  I'm so happy for you to hear that even though your CA-125 has fluctuated over the years, that you are doing well - does that mean you've had no additional rounds of chemo since the 6 you had post surgery??  I'm wondering if the more I read the more confused and anxious I get - at least that seemed to be the case for a few weeks there so I've basically decided to just wait this time out; to get beyond these fractured ribs and this darn flu/bug, whatever it is.  Truth is I'm angry and worn down from being in pain for weeks. At least during chemo I was in no pain - I was tired and weak but no nausea or pain...  It's all just a big bugaboo (or pain in my butt!) but/and sometimes the negative thoughts/feelings seem like they're smothering my spirit for living and loving.  Sorry to whine on so.  They say, 'this too shall pass' - alright already, I'm waiting...

Take care Diane and know that you're reaching out is a gift beyond measure!

Sarah 

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[mgri...@meditech.com]

Hello Sarah,

I am so sorry to hear about your diagnoses, I would never wish this horrible disease on anyone. I was diagnosed with PPC back in November of 2010 following bouts of extreme abdominal pain and an abnormal pap test. My CT scan confirmed PPC stage 3C, and my CA125 over 1200,  and I immediately had the debulking surgery to also include a total hysterectomy. Carbo/Taxol treatments were started in January 2011, and my CA 125 went back down to normal within 3 months. 11 months later, the PPC returned in April 2012, where I received another round of carbo/taxol, and this time I added a holistic regimen of a pear leaf tea recommended by a friend with testicular cancer. My CA125 was back down to normal after only 1 treatment. My treatments continued through August, and my oncology surgeon and medical oncologist both were adamant that my cancer WILL return within 6 months-- well, it has now been 1 year and 9 months since my last dose of chemo, and I am still cancer free!  My CA125 has fluctuated consistently between 4-7, and I feel better than ever. I continue my pear leaf tea regimen every 3 months, and I follow up with my surgeon and oncologist every 6 months now.  According to them, I am defying the odds. I truly believe that having a strong, supportive network of friends and family are key, as well as maintaining a positive attitude/glass half full mentality. I will also continue my pear leaf tea regimen; despite the awful taste, I am highly optimistic that it is working for me. I wish you the very best, and will keep you in my prayers..  Mandy 

On Monday, April 14, 2014 1:32:51 PM UTC-4, Sarah Crocker wrote:

[abeato...@yahoo.com]

Sarah,

Please don't get discouraged.... That being said; scream, yell, cuss, be angry, be sad, be frustrated, feel everything you're feeling to the fullest.  My mom, now 70 has been living and fighting PPC for 3 years after being told that there was less than a year left of her time with us. Her treatment has been complicated by a seizure disorder that intensifies when her body undergoes stress or trauma.  She won't be able to have more surgery (debulking was done at the onset of diagnosis).  

The one thing mom has been struggling with is how everyone tells her how courageous she is when that is the farthest from her heart. 

I'm praying for you.  

Tell your family and your friends what's going on in your head and your heart. 

I can't offer advice about doctors, treatments or trials but I can tell you you're not alone.  If you ever need an ear this is an amazing place to start.

"Courage is not the absence of fear but rather the judgement that something else is more important than fear. ".... 

Ok, stepping down from the soapbox now... God Bless.

Ann E.

[Andy Kinnecom]

Hi Sarah, Ann, Mandy and Diane,

First, you are all right: you are not alone. There is hope - and support out there. Glad you're tuned in to this google group.

I created this group in 2008 for this exact purpose - so that those who are diagnosed with this disease can 'meet' somehow and compare notes, share information, and help each other out. My late wife, daughters and I also created www.primaryperitonealcancer.org. When we created the foundation and website, my late wife Martha said "If it helps just one person, it's worth it." She died of the disease after just 10 months.

I hope you have heard of - or will do some research on - HIPEC, and then ask your oncologist about it. My personal opinion is that this is the best option available today. You can also try a google search on Hipec and see if there are surgeons in your local area who perform it.  If you can not find one and need an introduction to a Hipec surgeon, please send me an email to me at Andy.K...@gmail.com and I'll see if I can arrange it for you.

Best to you,

Andy Kinnecom

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[Ann Eaton]

Thank you for the encouragement, Andy. My mom is beyond any more surgeries at this point. I'm only trying to come to grips with the best way to get the most from the time remaining. Your family has been a tremendous support , I visit the website and Facebook page regularly. Keep up the great work!

Respectfully,

Ann

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