by Carolyn Langlie-Lesnik | Sep 9, 2010 | Uncategorized |
Don’t forget to watch Stand Up To Cancer tomorrow, it’s on all of the network channels and several cable channels at 8PM (7PM Central time).
Also, I received this email today, and you can get $1 donated to Stand Up To Cancer by hitting a “Like” button on this facebook page; these are the details I was sent today:
I’m Rachel from Gilt Groupe Home and Children. Gilt Groupe is known for offering designer products at reasonable prices, making a name for ourselves by making you look your best for less. But now, we also want to make you feel good: we’re donating $1.00 to Stand Up To Cancer (http://SU2C.org/) for each new “like” on the Gilt Home Facebook page.
Our donation goal is $25,000 and we hope to reach it by Monday at 11:59 pm. EST. There are a couple ways you can help Gilt Groupe reach our donation goal:
“Like” the Gilt Home Facebook page and in return we’ll donate $1.00 to Stand Up To Cancer – Encourage your friends to “like” Gilt Home by clicking the “Suggest to Friends” link under the Gilt Home picture
by Carolyn Langlie-Lesnik | Sep 6, 2010 | Uncategorized |
I am writing this in response to a comment to my last post. I think all of us new to a cancer diagnosis struggle with what questions we need to ask the physicians we see. I did a lot of research prior to my first appointment with a specialist as I wanted to be able to ask intelligent questions.
I have some questions to ask listed on my FAQ page, they are as follows:
How many cases of appendix cancer (or peritoneal cancer) have you treated? (I personally wanted a specialist who had treated at least 50-100 cases of my rare cancer)
What treatments do you use?
What are your survival rates?
What are your complications rates?
How aggressive is my particular tumor?
What treatments do you think I will need?
How long do you expect my recovery from treatment to take?
What is the recurrence rate after treatment?
Another good list of questions is posted on this Making Sure Your Surgery is Safe site, published by the US Department of Health and Human Services.
My local very good surgeon, on discovering my cancer, also said that I needed a hemicolectomy ASAP. I personally chose not to have any further surgical procedures done at the time (my appendix had been removed laparoscopically), as I had thought I might need more than just a hemicolectomy, and wanted to have any surgery I needed done all at once. Because my appendix had ruptured, I knew I had seeded my abdomen with cancer cells, and based on my research, I felt I also needed peritoneal chemotherapy. Peritoneal chemotherapy is less effective when you have had previous abdominal surgeries (due to scar tissue and adhesions that form preventing distribution of the peritoneal chemotherapy…scar tissue and adhesions develop in about 5 days after major abdominal surgery).
In the end, I waited 6 weeks to have surgery done by a specialist who had treated many cases of appendix cancer (my surgery was more involved than just a hemicolectomy, I had the hemicolectomy done as part of my cytoreduction surgery). I had peritoneal chemotherapy initiated almost immediately after surgery (before scar tissue and adhesions had formed), and had not other abdominal surgeries aside from the laparoscopic appendectomy prior to my cytoreduction surgery. All of those things I think went in my favor, I have been cancer-free for 9 years.
While we all want the cancer removed from us as soon as we are diagnosed, sometimes it is worth the wait to seek out the correct treatment, to see a specialist. I have many of the specialists listed on my “Physicians and Facilities” page.
Hope that helps!
by Carolyn Langlie-Lesnik | Sep 2, 2010 | Uncategorized |
I am back in school! I am working on a graduate Oncology Certificate through Loyola University in Chicago. I love going to school, and I love learning, so I’m excited!
I am only taking one class right now, Cancer Genomics. Not many oncology certificate programs offer classes in cancer genomics, it’s one of the reasons I decided to pursue the program at Loyola. I’ve been exposed to much research in cancer genomics attending AACR research conferences, so have a little bit of knowledge. I know cancer genomics will change the future of cancer care.
Cancer genomics is about the genetics of cancer. Cancer is a genetic disease; it is caused by altered genes. Genes that normally control and limit the growth of cells goes awry. Only a small percentage of cancers are caused by genes inherited from our parents, only 5-10% of cancers are inherited. Most cancers are caused by genetic defects/changes that occur over our lifetimes. Recent studies have found that cancers do not arise from a single defective gene, but from a group, or series of genetic defects.
It was also discovered that even in people with the same cancer, say colon or ovarian cancer, the genetic defects in the tumors from two patients with the same cancer can be very different. So even two of us with signet ring appendix cancer may have very different tumors that respond differently to treatment. This may explain why chemotherapy for one patient’s colon cancer is not effective on another patient’s colon cancer (or appendix or ovarian cancer).
That may sound like bad news, but it may in fact be good news. A new field is rising from cancer genomics, pharmacogenetics. It is possible that all of our individual tumors will be genetically analyzed in the future. It’s possible that based on the genetic findings of our tumors, they will be able to determine which chemotherapy will be most effective for a particular patient’s cancer. That means no one would have to suffer the side effects and expense of going through a chemotherapy regime that would not benefit them.
At the presentation, they said it will one day also be possible based on a patient’s genetics to determine who will have severe reactions and side effects to a particular chemo, so that they can avoid using the particular chemotherapy for that patient.
It was interesting; one of the presentations I attended spoke of a particular chemotherapy in a clinical trial. The chemotherapy only helped 10% of the patients in the trial, so the drug was not approved by the FDA. The interesting thing was that the 10% who did respond had an overwhelmingly positive response, many went into remission. It could be that particular 10% had common genetic defects, and that the particular chemo was effective for that group. It could be in the future that treatments are tailor made for the genetics of our particular tumor.
Will let you know more when I know more…but it’s a brave new world in cancer care!
by Carolyn Langlie-Lesnik | Sep 1, 2010 | Uncategorized |
I’ve been working a lot of hours at my new job…it’s been interesting. For me it is an entirely new nursing venue, nothing like what I’ve ever done before. My best friend wanted me to try it. I’m working at an in-patient locked psychiatric unit for kids ages 5-17. I’ve never done psychiatric OR pediatric nursing. This job will let me choose my hours, as I will hopefully be in two graduate programs simultaneously and often attend various conferences. I need the flexibility. They’ve told me they like and appreciate me there, but realize they are just a “pit stop” in my career, as they know my career goal is to work in oncology.
What intrigued me to work in psychiatric nursing was how much I know of how a cancer diagnosis disrupts our mind, our thinking, and our emotions. For me recovering from the extensive surgery (MOAS, Mother Of All Surgeries) and chemo was a breeze compared to living with the fear of recurrence, the sense of uncertainty, the anxiety, the depression sometimes.
Most of the kids I now take care of have had horrible lives. They grew up in homes where there was alcohol and drug abuse, very many have been sexually abused; they have been traumatized from a very young age. Most have also been physically and emotionally abused. Many suffer from PTSD (post-traumatic stress disorder) related to incidences in their lives. One teen I take care of was sold to child molesters at a young age for drug money for her parents. One lived with her grandmother because she had been removed from the home of her drug abusing mother, but was allowed to visit her mother. One of her mother’s friends raped her at age 7 when she was visiting.
All of the stories are sad. Many of the kids will never recover…if they make progress at our facility many will be discharged back to the dysfunctional homes they came from. Some go on to live their remaining lives in state psychiatric hospitals. They have been forever changed. It’s heartbreaking.
But it makes me think of how traumatic events in our lives forever changes how we think, how we feel, how we live and process information, even as adults. Many of my kids mistrust the future, as do we after a cancer diagnosis. Many kids suffer PTSD as a result of trauma in their lives…it is now being recognized that cancer patients do as well. Many have had their lives threatened, we have too. At least we have the benefit of having grown up in a hopefully healthy environment before diagnosis, so we have some resources we’ve developed over our lives to help us come to workable solutions. We are also for the most part adults and independent so can pursue resources to help ourselves, like counseling and antidepressants if we feel we need to.
But in the end, it’s made me so aware of how negative experiences affect us all in so many ways. We can still pull some positive things out of our cancer experience (though I continue to feel cancer is not a “gift”). My hope is that some of these kids can recover and make positive use out of their experiences…maybe one day help other abused kids as they will understand. Just like those of us who have been through the cancer experience support and understand each other. We need someone else who’s “been there and done that”.
