by Carolyn Langlie-Lesnik | Feb 27, 2012 | Uncategorized |
I just realized my website is down!! Apparently I failed to renew my domain, and now I am having trouble accessing the domain vendor to try to renew it. If I access it, I’m going to renew the domain for 10 years so I don’t have to deal with this again! It explains why recently I have received no emails from newly diagnosed appendix cancer patients. I thought it was just a lull….no, my domain email doesn’t work either. I’m so sorry to any of you who have tried to contact me. In the meantime, if you need to contact me, you can email me at clanglielesnik@gmail.com. I’m working on trying to get the site back up and the email working.
Also, I was recently in the hospital, not cancer related, but had a close call and again am glad to be alive. I am fine now, and am leaving tomorrow with my husband to go on a 2 week Hawaiian cruise to celebrate our 25th anniversary. Yet another landmark I get to celebrate…we’d been married 15 years when I was given a terminal diagnosis.
by Carolyn Langlie-Lesnik | Feb 6, 2012 | Uncategorized |
If you’ve emailed me and I have not replied, it’s because my email program crashed. Will reply as soon as I can! I know several have requested PROGRESS questionaires, I will get them to you as soon as I can!
by Carolyn Langlie-Lesnik | Dec 22, 2011 | Uncategorized |
Wow, I can’t believe it’s been so long since I’ve posted! I’ve had a really tough semester at school. I am attending two universities, Purdue University for my masters degree as a Clinical Nurse Specialist and Loyola University Chicago for a Graduate Certificate in Oncology. Loyola is a very tough school (lowest B 86%, lowest A 94%). I love my Loyola classes the best as though they are very tough (lots of microbiology, biochemistry etc.), they are all cancer related and I am learning so much. So far I’ve gotten all As in my Loyola classes (though one was an A-). I am very proud of that. This semester I paired very difficult classes at both universities (I usually try not to do that!). I was in way over my head and have been very stressed out for awhile!! But finally…….this semester is over. I am so grateful to be done. After this semester I’m cutting back on my classes for future semesters. I won’t do this to myself again!
At any rate, I’ve usually tried to post here once every week or two, and it’s been 2 months! I am so sorry! I’ve still communicated with many newly diagnosed appendix cancer patients over the semester….one diagnosed at only 28 years old just months after giving birth to her first child. My heart truly goes out to her. Luckily, she got to a specialist and had HIPEC surgery, I am praying she does well. I want everyone to do well.
Another newly diagnosed patient was upset that her doctor admitted he knew little about appendix cancer and it’s treatment, so immediately referred her to a HIPEC specialist. I told her she had an excellent doctor. Most know little about appendix cancer (I’m sure little to no time is spent on the subject in med school, or nursing school….when we covered GI cancers at Loyola, no mention was made of appendix cancer). The best doctors are the ones who discover our cancer, are willing to admit they know little about it and send us to one of the few experts who DOES know how to treat us! For what it’s worth, one of my Loyola projects was to teach a subject to my class….I did appendiceal and other abdominal cancers, peritoneal carcinomatosis. I was able to make many nurses aware of cytoreduction surgery and HIPEC for our cancers.
For those of you willing to help, we still need more patients to participate in the PROGRESS initiative I am working on in conjunction with Dr. Esquivel and the American Society for Peritoneal Surface Malignancies (I have kept up with that this semester too!). If you’ve had or will have HIPEC surgery and would like to help, email me at carolyn@appendix-cancer.com for more information, and thank you in advance!
I guess what I want to talk about is what I am learning at Loyola. Personalized cancer treatment and molecular therapeutic targets are where cancer care is going. One day soon chemotherapy may be a thing of the past. All cancer is genetic. Only a tiny amount of cancer is inherited, most is caused by genetic mutations we pick up as we live our lives. As it turns out, two people with the same cancer (ovarian, colon, appendix) can have very different genetic mutations of their tumors. I don’t know if you are familiar with HER2 positive breast cancer (very responsive to the new targeted drug Herceptin), but it turns out a certain percentage of stomach and colon cancers are also HER2 positive. HER2 positive stomach cancer now has FDA approval for treatment with the breast cancer drug Herceptin, though for some unknown reason HER2 positive colon cancer does not respond to Herceptin. They are starting to identify enzymes in the blood related to genetic mutations that cause cells to uncontrollably reproduce (cancer) and are finding ways to block these enzymes with new drugs (pills and not IV chemo) that can stop certain cancers….an example is the pill Gleevec given to those with a form of leukemia. Gleevec can cause a prolonged remission from the disease by blocking an enzyme. These drugs only affect the cancer, unlike chemo drugs that kill all rapidly dividing cells (good and bad, like our hair cells and cells of our GI tract, so also cause baldness, diarrhea, nausea and vomiting). Gleevec is an example of a targeted therapy…it targets the one abnormality that causes the particular cancer. 10% of those with a usually fatal lung cancer have a genetic mutation that responds to another new drug, Tarceva. Tarceva is a pill, not IV chemo. I went to a research presentation and an oncologist showed us a patient’s chest X-ray, many tumors, advanced lung cancer. He had the specific genetic mutation that made him a candidate for Tarceva. He showed us another chest X-ray from that patient taken just weeks after he was on Tarceva. No tumors at all, and he has been tumor free for 5 years while on the drug.
It takes many years (about 15, if I remember right) and billions of dollars to develop just one of these new drugs, so it may be awhile before we see many of them. Many are in development. Developing these drugs also depends on patients willing to participate in clinical trials. But wouldn’t it be great if chemotherapy and sitting for hours in infusion centers became a thing of the past? Maybe one day…..
This is a link to an NCI site about targeted cancer treatments: Targeted Cancer Therapies.
Promise to be back soon!
by Carolyn Langlie-Lesnik | Oct 21, 2011 | Uncategorized |
Got notice that over 700 attended this years Heat It To Beat It walk in Maryland, and over $114,000 dollars were raised for research! It’s only the second annual walk and was SO successful! The money will all go to research. I hope those of you who read this blog can attend next year, I’d love to meet you!
by Carolyn Langlie-Lesnik | Sep 20, 2011 | Uncategorized |
I just returned from Baltimore. Was a great trip. I met several appendix cancer survivors, some of a year or less, others longer term survivors.
Sunday was the day of the walk, and I was SO inspired. I don’t know the exact numbers yet, but I think 800-900 attended. The walk was SO well done. It’s a beautiful walk in Baltimore’s Inner Harbor. The walk offered DJ assisted dancing before and after the walk, an exercise coach led before-walk warm up exercises, there was plenty of bottled water and snacks for the walkers, and an opening talk by Dr. Sardi . I was called to the stage by him and had handed a microphone. Had to do an impromptu short speech! Caught me off-gaurd, but I was glad to do it! I had a booth for the Appendix Cancer Connection, and the PMP Research Foundation and PMP Pals were represented at the walk also.
Here are some pictures!
Registration before the walk….lots of people!
Pre-walk warm up exercises!
Dr. Armando Sardi welcomes the crowd.
The walk begins!
The walk continues!
Post walk dancing complete with DJ!!
B&W photo of me and Dr. Sardi!
The walk was terrific! I hope you are able to come next year….like me, you will be inspired!
