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5/10/2016 Latest post:
UPDATED NOVEMBER 3, 2016)
Welcome to Mondai Synstegard’s CaringBridge page (as written by her husband David). I’ve created it to keep friends and family updated about our loved one and her journey with cancer.
Since I’m starting this page a few months into this whole process, here’s a brief (ok, maybe not so brief, but believe it or not this is condensed) background on what has happened so far.
- It all started on November 11, 2015, Mondai was having severe stomach pain and started vomiting in the night. Thinking it was just a bad case of the flu I took her to a minor emergency center. They checked her out and ran a CT scan only to discover she had a complete blockage of her small intestine. They transferred her to the real hospital where we tried for a few days to get a diagnosis of what was causing the blockage. Then on Sunday Nov. 15th they did surgery and performed a small bowel resection, removing 8-10 inches of her small intestine and a mass 7cm across (about the diameter of a baseball). She went home Nov. 22, but we still didn’t have a firm diagnosis of what caused the mass.
- It took another week to confirm that the tumor was cancer, but they weren’t sure exactly what kind of cancer. Being only a 3 hour drive from MD Anderson in Houston, known as one of the top cancer facilities in the world, we immediately started working to get her in with their specialists. Long story (here’s where the condensing comes in), but she finally got in to see them on December 21. Unfortunately Mondai’s tumor even stumped the experts, they couldn’t come to a specific diagnosis either. They initially labeled it a Sarcomatoid Carcinoma (which ultimately turned out to be wrong) and prescribed chemotherapy for Adenocarcinoma – the fairly “common” type of small intestine cancer (which is actually fairly rare in cancer terms).
- Side note, through this process I learned more than I ever wanted to know about the differences between Carcinomas, Sarcomas, and Mesotheliomas, I had no idea there were so many different types of cancer (and that’s just a fraction of them).
- The chemo was technically adjuvant or a “clean-up preventative” type of chemo and was a bit of a shot in the dark. We all thought there was a chance that the cancer was fully removed when they took out the tumor and the chemo was just in case microscopic bits of cancer has spread into her bloodstream or a few cells were left behind. She took one round of the first chemo (2 weeks of pills at home), then developed severe intestinal issues which landed her back in the hospital in late January 2016 with Colitis(severe inflammation of the colon). Many rounds of anti-biotics and 11 days later she was finally sent home where were-started the waiting game. We still didn’t have a firm diagnosis of the type of cancer…
- The next follow-up check was March 23rd with MD Anderson. At that appointment we got the double whammy news that the cancer was back and the tumor had already grown to 7cm, the same size as it was in November when they removed it. And we got the diagnosis that the cancer was a Mesothelioma. While Meso is a very rare form of cancer with only about 2,500-3,000 cases per year in the U.S., most people have heard of it from the attorney infomercials talking about asbestos lawsuits and lung cancer. Little did we know that about 20% of Meso cases are peritoneal, i.e. in the abdomen, and there is a wide range of types of Meso ranging from benign and very slow growing, to very fast and aggressive. So not only did she have a fairly rare cancer in a fairly rare location, she had the aggressive variant which puts her in a class of maybe 150-250 cases per year in the U.S.
- Needless to say we immediately started a new type chemo, actually 2 different drugs administered through an IV every 3 weeks. The plan was to do 2 rounds of chemo and go back to MD Anderson for re-scans in 6 weeks to see if the chemo was effective. If the chemo was effective we would likely be heading to another surgery.
- However Mondai being the over-achiever as all of you know her to be, she immediately started researching mesothelioma, tumor staining and protein markers, and surgeons all over the country. She found 2 surgeons known to be experts in this specific type of cancer and surgery, one in Pittsburg and one in Washington, D.C. The D.C. doctor actually developed the whole HIPEC procedure in the late 80’s/early 90’s. We flew out to visit both of them, met with the Pittsburg doctor on April 28th, and met with D.C. on Monday, May 2. He felt she needed the surgery quickly, and suggested the next Tuesday May 10. While we were very overwhelmed with the speed of everything, we returned to Austin to think it over and Mondai ended up back in the hospital with unexplained fevers from May 3-7. Luckily this led to a CT re-scan faster than we would have with MD Anderson and we learned that the chemo was not effective and the tumor was up to 10cm across, softball sized. That sealed the deal and we immediately made arrangements to come back to D.C. for surgery on May10.
- Which leads us to today, May 10. I am literally typing this Caring Bridge page as I sit in the waiting room while she is in surgery. The entire procedure is expected to take about 10 hours where he will remove the tumor and all non-vital organs in the abdomen that may be hiding the cancer, and then administer heated chemo into her belly for up to 3 hours, that’s the HIPEC part. This is obviously not some micro-surgery, she will be wide open and the recovery time is expected to range from 2-4 weeks in the hospital. From here on out I’ll do my best to post regular updates here on her progress – I promise! And a huge thank you to all of her friends and family, all of the offers of meals,help with the boys, and continuous prayers are greatly appreciated. It is incredible to see the entire community rally around her, it truly is an amazing experience. Please keep the prayers coming, at this point it’s all in God’s hands…
UPDATE THROUGH NOVEMBER 3, 2016
While Mondai and I have updating in the Journal section, as I’m sitting here in the waiting room while Mondai has another surgery I thought it was time to update this section with the overview of the last 6 months
- The surgery in D.C. was extremely hard on Mondai and it took her 3 ½ weeks to recover and get released from the hospital, but at the time it seemed to be a success.
- She quickly adjusted to being back home in Austin, and on June 29 had a CT scan that came back completely disease free. However we still couldn’t get a firm diagnosis of the type of cancer she had, it kept coming back as “likely” sarcomatoid mesothelioma. So on July 13 we met with the mesothelioma specialists at the National Cancer Institute (a part of the National Institute of Health) in Bethesda, Maryland. Unfortunately even they couldn’t give us a 100% firm diagnosis, and even if they could they didn’t have any clinical trials that she was a match for.
- Then on July 21 (her 45th birthday) she had severe kidney pain and ended up in the ER. They did a CT scan that showed the tumor had already returned and was pressing up on one of her kidneys. Needless to say we were devastated…
- Her local oncolcogist, Dr. Uyeki (an amazing doctor by the way) found an immunotherapy Phase 1 clinical trial at the START center in San Antonio that looked promising. The drugs they were testing targeted the specific unique proteins and genetic markers that her tumor happened to have. We really thought this may be the key to beating her cancer. We met with them on August 17th and started treatment on September 1. Between the tumors and the treatment, she developed an intestinal blockage that put her in the hospital for 2 weeks starting the day she got back from San Antonio.
- She recovered from the blockage, then continued with the next treatment on September 28. Then On October 25th she had her first follow-up CT scan to see how the immunotherapy was working. Well again we were devastated, the immunotherapy hadn’t been helping at all and the tumors continued to grow. The larger one went from 8cm to 14cm (about 5 ½ inches) in diameter, and the smaller one doubled to 6cm.
- By this point the tumors were causing very high fevers into the mid-104s a couple of times a day. They had also caused her small intestine to develop a loop that the doctors were afraid would eventually pinch off into an obstruction or rupture soon
- Which leads us to today. She’s having surgery now to remove the loop and re-sect the intestine. Although the surgeon was clear that he really /wouldn’t know exactly what he would be able to do until he got in there. There’s only so much they can tell from the scans
So again it’s all in God’s hands. Please keep the prayers coming…