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  Roberta Aberle
Roberta Aberle
Aiming to be an Exception to the Statistics!

MyLifeLine Stories of Inspiration and Hope

Stories Connect Our Community
Whether you’re a newly diagnosed cancer patient, caregiver, or loved one, discover insights that inspire through shared wisdom that comes from having ‘been there.’

My Story

Last updated: Wednesday, August 23, 2017

Welcome to MyLifeLine.org Site authored & managed by Roberta J Aberle et.al.

All content contained here-in is protected material authored by Roberta J. Aberle, you are welcome to share and spread this post, but please ask for permission from the author for re-publication or re-print @ RobertaAberle1@gmail.com. I will happily honor requests for publishing my words plus, I encourage sharing my posts in my quest to further my mission to be a source of comfort for those diagnosed with cancer and of support to caregivers who want to know what to do for those they love with cancer!

This site will be reciprocal. You will be a resource and inspiration to me as I face this new and terrifying fight as I hope to be for you. Let us "ease the way" for each other. A mantra of mine and a way that I intend to walk through each day of precious life I am blessed to receive.

I thank each and every one of you for supporting me already through these mystifying, yet magical waves throughout the crisis of cancer.....with your support and rallying, I will pull myself safely to the shore on the other side in glorious recovery and recuperation!

DETAILED MEDICAL OVERVIEW:

Diagnosed with Primary Peritoneal Cancer {PPC} on 2/29/2012 {post bilateral oopherosalpingohysterectomy aka total abdominal hysterectomy including cervix in 2009}.

* see important note below.

Two weeks of abdominal signs & symptoms {S&S} only, presented with "extensive" disease with large masses in the spleen, gallbladder, diaphragm, liver and other vital organs along with 'numerous, unquantifiable" implants and disease present in the entire omentum & retroperitoneal cavities. Masses suspected outside and potentially within the colon and abutted the stomach and other major organs. This was as identified via CT scan in the Emergency Dept at Univ of CO Hospital.

Received a Gyn-Onc consult in ED but was told my disease was highly metastatic and looked very dire. On March 9th, deemed inoperable I was given 2 choices - attempt chemo but was suspected it would not work or enter palliative care once S&S became unmanageable. See this YouTube video for more specific detail and the dire numbers often given

How PPC is Diagnosed

Had biopsy and port placement on March 14th since I was determined to fight. I was staged at IIIc but the biopsy was insufficient as the tumors "moved" when attempting to pierce them for tissue. Pathology suggests due to the extensive nature of my cancer that I was more likely Stage IV.

Colonoscopy followed and 3 polyps were removed, but were biopsied and found non-cancerous. One tumor was pressing into the lower colon, but had not punctured through. Yet.

Entered a clinical trial on 3/30/2012 using an oral PARP inhibitor drug called ABT-888, plus Carbo/taxol every 7 days with a combination of Avastin every 3rd cycle. Significant response with CA-125 dropping into 100's and diminished burden of disease as shown on CT scan.

ABT-888 Clinical Trial Site

All Peritoneal Clinical Trials

Ended treatment 23 weeks later, then changed to Avastin only. Although, this was a contentious decision. Since I'd not seen a total eradication of my disease and was still highly functioning, working, socializing, I wanted to continue on the triple approach.

It was suggested that Avastin would continue to starve the blood supply to the tumors and was likely the factor that was working the best in my line of treatment.

Blood pressure management and sleep disorders on it were not well managed while I continued on Avastin into Q1 2013, in April 2013, the tumors and CA-125 started to elevate while on Avastin. Fortunately during the clinical trial my tumors finally diminished to a point of being operable by the following summer.

I pursued and essentially demanded & received cytoreductive surgery and HIPEC (hyperthermic intraperitoneal chemotherapy) 7/8/2013 by a joint surgical team at Univ of Colo Hospital. YES, they perform it there but do not promote that for some strange reason. EVER grateful to Elizabeth Luzier who advised me it was an option in our facility. I would have never known otherwise and would have invested $1,000's to go to either end of the country.

It was a very difficult and arduous recovery, I'm honestly still recovering today. Adhesions and scar tissue mar my belly and still cause pain in various motions. Another nerve block is scheduled in 10 days.

Major complaints post-operatively were mobility due to staples up the length of my abdomen, pain, 'toxic' nausea, disrupted sleep. I enrolled in an exercise program for cancer patients and through aquatics (not swimming, jut walking and moving in a pool), some very limited strength training, rowing machine if strong enough for cardio. TREMENDOUS relief. I highly suggest a supervised exercise regimen and PT / OT / Speech therapy for any cancer patient to help offset the effects of chemo on motor and cognitive skills.

Had subsequent IP chemo with cisplatin through October of 2013 administered through a port that was sutured to my ribs from August to October.

Had only 3 mos & 3 weeks of No Evidence of Disease {NED} - post Cytoreductive/HIPEC, then CA-125 rose from 7 to 48 and experienced increased pain in lower abdomen. Tumors defined as "limited" recurrence were found abutting sigmoid colon, liver and retroperitoneum.

The Sugarbaker Technique

Enrolled in a 2nd PARP trial in 3/2014 the same week I tried to return to employment. Failed at both. Oral inhibitor was ineffective so I changed to Doxcil every 21 days in late April 2014. Doxcil did not keep my CA-125 managed and escalated to 572 in July 2014, but my onc was certain it was the right treatment for me. By 11/2014 mucositis & mouth sores, along with blistering & bleeding on feet & toes, I took an 8 week hiatus.

Resumed Doxcil in an 2015, but continued to see too much fluctuation in CA-125 and S&S. Especially pain, so I sought and received multiple injections of nerve blocks in my transverse abdominus and plexus regions to help the pain. But the mouth sores, akin to having strep throat and blistering, bleeding heels and toes. It became necessary to suspend Doxcil and accept that my treatment options were limited.

12/2104 BRCA 1+ confirmed as well as MSH-6 Lynch Syndrome and learned of eligibility to receive Olaparib/Lynparza. Approved for FDA's provisional release of it within 10 days and was shipped to my front door from Biologics in NC. Co-pay with my specific insurance dropped from $1,290 per Doxcil IV to $20 per month!! Why yes I will take Olaparib/Lynparza!!

On 4/24/15 I started Lynparza, CA-125 at 170 & refused to relinquish any optimism.

PROGRESS on 5/22: CA-125 DROPPED 113 points to 57. My lowest mark in over a year! Hallelujah for this option available to me now. It's not my easiest course of treatment, but seeing results makes it worth all the aggravation and dreary days. N&V is the #1 challenge, along with significant fatigue.

PROGRESS on 6/17: CA-125 DROPPED AGAIN to 19 from 57. This is one of the most substantial drops I have ever experienced in nearly 4 1/2 years on constant treatment. I am ecstatic!

PROGRESS on 7/17: CA-125 has risen ever so slightly to 26, but I remain encouraged. Due to the sometimes unrelenting nausea, I have on some days taken only 1/2 dose of Lynparza/Olaparib to see if that effected the N&V. It does, but not to the extent that I want to lose my momentum, so back gulping down as many of the 16 each day that I can. Prevacid has given me some relief from N&V, now taking 1 an hour before my AM & PM doses. I still have food aversion, meaning that food and liquids just don't appeal to me. Of course, I've not seen a single oz of weight loss because I go so long between meals. Some times I can't eat anything until about 2pm, it's wrecking havoc on my metabolism, so I have to break this cycle. But most things I eat make me vomit so it's not much of a choice most days.

I also had a CT scan that shows completely stable if not slightly diminished tumors (3 in total that are of measurable size) plus a large area of multiple peritoneal implants, too many to count. Seriously Happy with progress on this drug compared to others and manageable side effects.

PROGRESS on 8/18/15: CA-125 has dropped to its lowest - 6 - it's been in over 2 years for me!!! I'm ECSTATIC!! I feel the best {fatigue is still an issue, but sleep disruptions seem to be the source} than in over a year. Anti-acids, like Prilosec or Prevacid are managing my relief from N&V, now taking 1 an hour before my AM & PM doses.

PROGRESS on 9/15/15: CA-125 stable - 6! So WHY and WHAT is the source of the pain and toxic feeling when I eat?

PROGRESS on 10/30/15: CA-125 keeps plummeting - 5. How. My stress is at an all time maximum. I don't think I've had a good night's sleep in literally 8 mos. I am usually quite latent on my values - meaning it can be 3-4 mos to see it go the other direction as a result of what I'm enduring right now.

PROGRESS as of 11/25/15: CA-125 still at a 5! This is the longest I've gone since my diagnosis in 2/2012 this low on the value. After cytoreductive surgery and HIPEC, I had a CA-125 of 6 for 3 mos & 3 weeks. As of this week, I break that record!! So ecstatic. It has certainly been an arduous road, but so worth being here to relish in the days gained. I will be tested again 12/30 with a CT scan in early 2016 and expect to be proclaimed NED by 1/26/2016. NEVER give up HOPE!

PROGRESS as of 3/26/16: CA-125 has gone up and up and up. Still qualifying as under normal range but the spikes have been dramatic since January. My sincere hope is that it is all sheerly due to stress of my other family dynamics with my Dad's cancer diagnosis. But as of now awaiting the decision whether I will be accepted into the immunotherapy trial or if I will return to the traditional type of chemo (hair loss, weight loss, more fatigue - hell, maybe it will offset my current incapacitating fatigue). The CT scan was inconclusive for disease progression, and may unfortunately show areas where additional "attention" is needed. NOT words you want to hear and more to be known as the days pass.

PROGRESS as of 11/15/2016: I was not enrolled in the immunotherapy trial and in hindsight being a good thing because at least 3 patients have been known to have passed from side effects of the therapy. I was enrolled in a P53 trial for an oral inhibitor but due to a viral response I was removed from the trial within a month. I resumed the oral parp inhibitor Lynparza but at the time I restarted it I was also noticing significant weight gain and abdominal distention. Those symptoms were unfortunately early indicators of a looming intestinal obstruction and quite likely made me unable to absorb and utilize the Lynparza effectively. On October 14th when I was due to resume IV chemo it was identified that I was in full blown obstruction and they needed to move to colostomy surgery immediately. The colostomy was performed on October 15th without complications yet my prognosis remained grim with an estimation of weeks to months. However, I rebounded and was on a course of Cisplatin / Gemzar from October into January due to unmanaged nausea. I was dropped from Cisplatin but remained on Gemzar.

PROGRESS as of 8/1/2017: Despite all odds, I survived through April 2017 after an ostomy take-down - hooray! Removal of multiple adhesions and tumors in the abdomen and 3 colon resections were performed. I was deemed momentarily cancer free but had little time to enjoy it due to complications from the surgery: #1 pulmonary embolism in left lung; #2 incisional wound infections; and #3 abdominal abcess. I spent April into May receiving Heparin on a wound-vac and with a drain placed. Due to superior therapy at a rehab facility and home health I made relatively quick progress. Cancer free was incredibly too short-lived, elevating C125 and CT scan at the end of June showed disease progression in the liver, mesentary and other peritoneal spaces. Began newest parp offered named Zejula in early July but that in combination with Heparin depleted my platelets to the point of needing transfusion. Anticipated return to Cisplatin is now postponed until August 29th and we will see what happens.

I hope to be better at posting and updating here since this drug may be valuable and beneficial for others as we learn more about its efficacy.

* IMPORTANT INFO RE: ABDOMINAL HYSTERECTOMY WITH FAMILIAL & OTHER RISK FACTORS

I had a total abdominal hysterectomy in 2009. Removal of ovaries, Fallopian tubes, uterus, cervix. At the time my gynecologist expressed, "whew - you dodged a bullet [There was sufficient diseases, identified as benign growths, but extensive adenomatosis in the ovaries and Fallopian tubes - solid & semi-solid cysts] we 'saved' you from getting cancer".

Little did I know that endometrial cells are everywhere in the abdomen. so without being followed, monitored or even being aware I was still at risk for cancer in that region, I was shocked to receive my primary peritoneal cancer. I was screened every 6 months, mammogram alternating with MRI of the breasts, which is all I knew about.

Ever since Angelina Jolie went public with her decision to have prophylactic surgery, I've been on a quest to share the risks are still great if you have a family history, especially a 1st degree family member ( I have 3 1st degree cancers in my 3 sisters), S&S's and age of onset of family members is around age 50.

Prevention & intervention remains key.

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