Appendix Cancer Survivor's Blog

This Blog Is Dedicated To Those Who, The Moment After Receiving A Cancer Diagnosis, Assume The Identity Of "Cancer Survivor" For The Rest Of Their Natural Lives.

EPIC: Early Postoperative Intraperitoneal Chemotherapy

When I had appendix cancer, I did not receive HIPEC treatment, I received EPIC, early post-operative intraperitoneal chemotherapy.   When I was searching for treatment, I’d read about HIPEC and wanted HIPEC, but it was hard to find, and I didn’t want my surgeon to be the one I knew of that offered HIPEC.  Both EPIC and HIPEC are chemotherapy that is put directly  into the abdomen after cytoreduction surgery.  You receive several EPIC treatments after surgery vs. the one HIPEC treatment that is done while you are in surgery for the cytoreduction surgery.  I’d hoped for HIPEC as I’d read that the heat itself can kill cancer cells, that the heated chemotherapy is more able to penetrate cancer cells, and that the heat also potentiated the chemotherapy, i.e. made it work better.  The surgeon I chose, though, use EPIC.

EPIC is sometimes done 4-5 days after the surgery, but I insisted my first treatment be done within 24 hours of my surgery.  Scar tissue and adhesions that can interfere with the circulation of abdominal chemotherapy can occur within 4 days after cytoreduction surgery.  I had a portacath in my abdomen to infuse the chemotherapy.  I’ve read that often the EPIC chemotherapy is drained from the abdomen after a certain number of hours, but we did not drain mine at all, we just let my body absorb the chemotherapy and the solution.  I had a total of 6 treatments.  Was interesting, I’m a nurse so learned how to do my peritoneal treatment at MSKCC.  I only had my first two treatments at MSKCC and the last 4 done with my oncologist at home.  As I am a nurse, I had to train my home office how to do the peritoneal treatments, they had never done them before!

EPIC worked for me, I have been cancer free for 19 years.  Memorial Sloan Kettering, where I was treated, is doing a study comparing EPIC and HIPEC to see how they compare.  The study is ICARuS.  You can read of it here.  It was started in 2013 and is expected to be completed in September of 2021.    MSKCC offers EPIC, but not HIPEC that I am aware of.   It will be interesting to see the results of the study.

Some specialists use 5 treatments of EPIC after HIPEC, so they use both EPIC and HIPEC.  Studies have been done comparing HIPEC also to HIPEC and EPIC both used.  One study I read said the complication rate is higher when both are used, but I haven’t yet read any studies that compare the survival rate of using both HIPEC and EPIC together yet.  Most specialists now treating appendix cancer are using HIPEC for the benefits of the heat.

Why HIPEC?

Right now, cytoreductive surgery and HIPEC are the treatment of choice for appendix cancers.  Cytoreduction surgery is the removal of ALL visible tumors in the abdomen.  HIPEC is Heated IntraPeritoneal Chemotherapy.  HIPEC is heated chemotherapy solution that is placed directly into the abdomen, not the IV chemotherapy that is given through a post or a vein.

I don’t know if you’ve heard of the “blood-brain barrier”?   Your body protects your brain by not allowing harmful substances to be delivered by the blood into the brain or into the central nervous system.  It prevents germs in the blood from being delivered to the brain and also blocks toxic substances from being delivered from the blood to the brain.  This can be a problem, because sometimes you might want a toxic substance from the blood to get in the brain, for instance chemotherapy to be able to get to a brain tumor.  This can make brain cancer difficult to treat.

There is something similar in the abdomen, the plasma (blood) peritoneal (inside of the abdomen) barrier, the plasma-peritoneal barrier.  This barrier also prevents harmful or toxic things in the blood from getting into the abdomen.  This make chemotherapy that goes into your blood via a port or vein not very effective against tumors in the abdomen.  But just as not much of the chemotherapy from the blood  goes into your abdomen, chemotherapy placed directly in the abdomen works better than the IV chemotherapy. Your abdomen gets the full effect of the chemotherapy placed directly in the abdomen as it passes the barrier.   Also, the barrier works in reverse, so toxic things in your abdomen don’t go back into your bloodstream. This means you can use chemotherapy in a stronger concentration when it is placed into the abdomen, because not much will get back into the blood stream because of the barrier.   I had no side effects from the chemotherapy placed in my abdomen.

This is a good article to read about the plasma-peritoneal barrier and HIPEC:

Breaking Through the Barricade

Butterflies

Sometimes we need to distract ourselves from cancer when we can.   From the treatment, the chemo, the lab tests and scans, and maybe even those around us who seem to just focus on our cancer now.

I’ve always found peace (and God!) in nature, when I’m out in the woods.  When I look at how nature works, it’s magical.

I wanted the butterfly for our logo as I used to raise monarch butterflies, from eggs!   I’m kind of passionate about butterflies!

I’d follow monarchs around at parks or in wooded areas and watch them land on milkweed leaves.  Then I’d find  one egg  it laid the back of a milkweed leave.  Here’s a picture (not my pics, from the net!)

:

I’d bring the egg home with lots of milkweed leaves, and put it all in a 5 gallon aquarium or very big jar and watch the eggs hatch. I’d watch the caterpillars grow. (I had to get new leaves about every other day.)   They shed their skin as they grow larger.

       

One day, they have a fine piece of silk they secrete and they hang from the end of a branch or twig in the jar, and after awhile, their skins splits open and they just look like a gooey mess.  Their head and all of their skin falls off.  But a few minutes later, they are a beautiful chrysalis!  Below is a time lapse video of the process.

About 10 days after the chrysalis forms, it becomes clear and you can see the butterfly inside.  Shortly after it becomes clear, the butterfly emerges.

Watching the life from egg to butterfly was always a very profound  for me.  Most of the life of the caterpillar is very limited.   It only searches for leaves, eats and grows.  I has many legs but moves very slowly.   When I look at the whole field of flowers and trees, I think of the tiny view of the caterpillar.  Just the few milkweed plants in it’s very small circle of life.  It really has no freedom, doesn’t really seem to do anything for enjoyment.  It loses everything, it dies.  It’s head falls off and it’s skin falls off, and it just appears to become a blob of nothing. Does it understand that that is not the end of their life?

But to wait and watch, see the chrysalis form and see the butterfly emerge is amazing.   Usually the butterfly will stay in my finger until it’s wings dry, and then it takes off!  Now it is free and can travel great distances and see the world from so many different views.  It’s is beautiful and it can FLY!!  And it flies to beautiful flowers to drink sweet nectar.   In the end it travels up to 3000 miles following an instinctual path and it meets up with thousands of other monarchs in Mexico.

It reminds me that in this life we can be very limited, but one day, like the monarchs, we too will will be beautiful and free with an unlimited realm.  And we will be able to meet with so many others who have also become free!

I’ve raised enough monarchs I’ve gotten to see every stage of development.  It’s amazing to watch!

Hope I didn’t bore you with this, but think of it when you see our butterfly logo!!

 

Facebook Support Group

Hi All!

I did start a Facebook Support Group on our Facebook page!   Hope you will join!  I also plan to continue the Virtual Appendix Cancer Support group, more about that later!

The Facebook group is a private group, members will need approval from me to join, I will also moderate the group to make sure nothing offensive to others is posted.  The group is for patients and primary care givers. Only members will be able to see each others posts.

I am also planning to have a sign up for the Virtual Support group.  You will sign up with your email, and I will email you dates and times the group will meet.   I will let you know when the email sign up is available!

Have a great day!

Carolyn

Facebook

Hi everyone!

Just to let you know, I do have a Facebook account associated with this organization.  I’ve actually had it for several years,but as I don’t use Facebook personally, I’ve not used it much for the organization.  Don’t laugh, it had been so long since I used it, I forgot the user name and password…tried every email address and password I’d ever used, but could not access my administrator rights.  Have you ever tried to communicate with Facebook the company?   It’s about impossible.   I’d wanted to delete the old page and start a new one I could use for this organization, but I couldn’t delete it either (didn’t have admin access).  In the end my web site designer actually got ahold of real people from Facebook, and after I sent them a copy of my passport and all of the Articles of Incorporation and Business Entity reports showing myself as president, Facebook granted me admin rights to the page!!  So we are back on Facebook!

I would like to be able to communicate with you.  I added a forum to this web site, but that never went over.  But almost everyone I know uses Facebook to communicate with the world!!  So I am going to start using Facebook also to communicate with all of you.   The link is:
https://www.facebook.com/AppendixCancerConnection/

I started the virtual support group, which I really love because I can see and talk to you, but do you think we should also have a Facebook support group?  We’d be able to answer each others questions and to share what we have learned on our journeys at our convenience.  Maybe then the Facebook support group could meet virtually once a month or so?  Let me know!  I really would like feedback from you.   You can email me at carolyn@appendix-cancer.org or text me at 219-776-9913.

One more thing, I was recently interviewed by Cure Magazine for an article they did about appendix cancer.  Will post a link to the article when they send it to me!

 

Appendix Cancer Support Group

Hi All!

We had the second Appendix Cancer Support group today, but only one participant beside myself.  We did have trouble using GoToMeeting so got a late start.  I hope none of you were there and unable to connect?  If so, PLEASE let me know!  I may go ahead and try to get us a Zoom account, that worked well last time.

I need input from you.  How many of you would like to join our support group?  It’s a great thing!  Please email me at
carolyn@appendix-cancer.org if you would like to be part of the support group, and then maybe I will post a list of dates and times to find the best time for everyone.  If you email me, let me know the best time range for you. You can also text me at 219-776-9913.

Let me know!
Carolyn

Our Support Group Meeting Tomorrow!

Hi!

Thanks for waiting for me to post this, I’ve been camping at a primitive campground for the past week and just got home!

Bear with me, last time we met on Zoom, it’s an online meeting software everyone is using.  I have an account via my job at the college.  My boss let me use it for our support group last time, but told me I really shouldn’t use the college account for that.  I was working on getting my own private Zoom account for my non-profit via Tech Soup, and I paid for it, but never got access, not sure what happened!

I’ve been told many like GoToMeeting better, and I’ve heard it’s hard to have two Zoom accounts on the same computer, so I just got a free trial membership for GoToMeeting and we are using it for the support group tomorrow.  I’ve never used it before, so let’s see!  I hope everything works out!  I am used to using Zoom.  Wish us luck! Hope to see you tomorrow!

Here’s the link:

Appendix Cancer Support Group
Tue, Jun 2, 2020 11:00 AM – 1:00 PM (CDT)

Please join my meeting from your computer, tablet or smartphone.
https://global.gotomeeting.com/join/388050869

You can also dial in using your phone.
United States: +1 (646) 749-3112

Access Code: 388-050-869

New to GoToMeeting? Get the app now and be ready when your first meeting starts:
https://global.gotomeeting.com/install/388050869

 

 

Covid-19

I haven’t addressed this yet, but it’s of course on all of our minds. None of us really expected this, it has created a new world we are living in now.

The VIRUS.

Maybe I see this differently as I am a nurse and knowledgeable about infectious disease, but I don’t think this will be over until we have a vaccine or an effective anti-viral drug to treat it. I don’t see a vaccine being available for at least another 12-18 months, and then billions of doses will have to be manufactured and distributed and paid for. Anti-viral drugs are few and far between, so I don’t know if we’ll find another treatment for it.

I’ve never been a terribly social person. As a college professor, I am now teaching my classes on-line, so I am able to stay at home. I have lots of things I like to do; sew, crochet, play piano, read, write, hike- so I am doing fine with the stay at home orders. I live near the Dunes State Park, so go hiking there 2-3 times a week, so I still get “out”. I’m going on a solo camping trip next week.

But I know many others struggle. I did go out to get vegetables etc. for my garden (I have an N95 mask I wear whenever I am out), and I was surprised at the number of people I saw out and close to each other and not wearing masks. I think they just want life “back to normal”. I think we’ll see another spike in cases.

But I think people are still watching out for each other. I was in a grocery store the other day (with my mask of course) and the floor at the entrance was wet and I fell. Three people (also wearing masks) rushed over to see if I was okay and to help me up….they weren’t 6 feet away, I told them that but they didn’t leave. That really had an impact on me! It seems especially when times are hard, people look out for each other.

But I think of all of you. I at this time don’t really feel vulnerable to cancer. I’m trying to imagine what it’s like for those of you actively fighting cancer. I told you uncertainty was what made my cancer journey most difficult. How would I have felt if I was dealing with the virus too at that time? When I was dealing with cancer I always knew I could die soon, how does it feel to have your life threatened now by both the virus and cancer? Or maybe I would have felt the virus was much less of a threat, the death rate from cancer is much higher. Maybe the virus wouldn’t have had much of an effect on me compared to cancer.

I’d like to know how you feel. You can leave a comment here or email me, or maybe we will talk about this a bit in our next support group.

19 Year Anniversary Cancer Free Today!

Today is my anniversary date! I had my cytoreduction surgery May 15th 2001, so May 16th 2001 I was cancer free, all tumors had been removed. This is the first year I wasn’t absolutely sure the 16th was the day. I just know my anniversary day is the same days as my daughter’s best friend’s birthday, and I double checked, yes, today is her birthday and my anniversary date! Next year will be 20 years! And still no one calls me cured, I am just in long term remission. Whatever….just words. I feel cured and that’s what matters!

I had so many dates in my head…March 28,2001 was the day I was diagnosed. I believe I was in New York for my evaluation 4 weeks after I was diagnosed, and my surgery was about 6 weeks after I was diagnosed. I was discharged from the hospital 6 days later. I had my 6 EPIC (early post operative peritoneal chemotherapy) treatments over several weeks following the surgery. The first two were done in New York, but the last 4 were done at my oncologists office at home. They had never done peritoneal chemotherapy in my office at home, but I was a nurse and learned how to do it in New York, so I taught my oncologist and her nurses how to do it! I supervised them while they did my infusions! My last day of IV chemotherapy was January 22, 2002, so I was in treatment of some sort for almost a year.

I’m working with my website designer. We will build the support group into the web site. In the end, the support group will be by request. If you want an invitation to the support group, you will need to submit your email address, then you will be mailed the link. I think that will be a good thing. As I am a college professor, so I’m also thinking of good ways to use the support group for education! Don’t worry, it won’t be a class, it will be a support group. I like it that we can do it virtually, we can see and speak to each other. It’s almost like “being there”! I’m sure it will be a learning experience for all of us. Until we get it set up on the website, though, I will still post the support group links on my blog. We will just transition down the road.

Also, several years ago I had my previous we designer design a Facebook page for the Appendix Cancer Connection. I used it for a bit, but since I don’t use Facebook myself personally, I let the business Facebook go. Someone said I needed to use Instagram and Twitter for my non-profit, so I went to a seminar to learn how to do that -but my web designer said I might better be able to communicate using Facebook. Now I’ve forgotten the password, and the email that was my username is no longer active, so I need to find a way either to get back on that Facebook page, or to delete it and create a new one for us. I just got to realizing how many people I know who use Facebook…more people than I know who use Twitter! So that’s in the works too!

I am open to any comments or suggestions any of you may have! You can email me at Carolyn@appendix-cancer.org or leave a comment here on the blog!

Take care!
Carolyn

The Appendix Cancer Support Group Will Meet Regularly!!

Hello Everyone!

We just finished our first Appendix Cancer Support Group via Zoom, and it went great! We could see and speak with others dealing with appendix cancer. This was the first support group meeting, and there were three of us (and our husbands!). One from Ohio and one from Hungary and myself, so it was an international support group!

We all decided we want to continue to meet, for now we decided we want to meet monthly. For the next meetings the preference was a weekday and not weekend. We’d thought about doing an evening meeting, but since we are international and Hungary is about 6 hours later than Central time, we decided to meet Tuesday June 2, 2020 at 11AM Central time. I will again post the invitation and link to the support group on my blog.

We will discuss at out next meeting if we want to have a regular date and time after we see how many attend and what time constraints are.

For now I will post invitations on my blog. If we continue to have regular meetings, my web designer will make the support group an addition to my website. My web site designer suggested maybe down the road, I send email invites instead of posting the invite on my blog in case we get someone who tries to “crash” the meetings, but I think that’s a wait and see thing. For now I will post the links to the group on my blog.

I would love to hear from anyone re: you feelings about the support group. You can leave a comment here or email me at Carolyn@appendix-cancer.org. I think it will be a great thing!!!

Take care and stay safe!

Carolyn