My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, August 18, 2011

Can you please help us with PROGRESS?

I've written here before that I am on the board of a new medical organization, the American Society for Peritoneal Surface Malignancies.  Peritoneal surface malignancies are cancers, like appendix cancer, that spread into the abdomen.  The state of the art treatment for these cancers is HIPEC or EPIC, chemotherapies administered directly into the abdomen.  IV chemotherapies have limited effectiveness on these cancers, where as HIPEC snf EPIC can often allow for prolonged survival, as in my case....I am 10 years cancer-free.

We have some mountains to climb, though.  We need to make this therapy recognized as effective and covered by all insurances (some won't as they consider it "experimental").  We need to gather information to help document it's effectiveness.  We need to make the medical community more aware that this treatment is available.  We need to know how soon patients see a specialist after diagnosis and how they are referred to specialists (self referral, MD referral  etc.) and what treatments they receive before seeing a specialist.  That information has never been compiled.  There is a great need for this information to help promote specialized treatment for those diagnosed after us.

To help overcome these mountains, the American Society for Peritoneal Malignancies is creating a database, PROGRESS, of information answering these questions.  Hopefully the answers will one day be compiled and published in a peer-reviewed medical journal, which will increase awareness and advance our cause in the medical community.

I've had several patients ask me how they can help in this regard, and here is a great chance!  I have a PROGRESS questionaire and I am asking patients who have or will receive EPIC or HIPEC treatments to PLEASE participate!!  You confidentiality will be maintained.  It is really important we get patients and their surgeons to participate!!  If you would like to participate, please email me at carolyn@appendix-cancer.com and I will email you the form and help with any questions you have.  Again, PLEASE help!!!





5 comments:

Anonymous said...

I WAS DIAGNOSED WITH APPENDECEAL CARCINOMA IN l994 and hod chemo in conjunction with radiation due to misdiagnosis was left disabled wherein they had to sacrifice the femoral nerve and other nerves and muscles in my leg. Two years ago had major obstruction due to scar tissue now I have anemia and very poor balance dud to the antibiotics Glad to help you in any way and love BALTIMORE but cant walk more than a block

Carolyn Langlie-Lesnik RN BSN said...

If you'd like to participate in PROGRESS, please email me at carolyn@appendix-cancer.com!!!

Thank you!

JR said...

Hi Carolyn:
I'm new at following your blog. I was diagnosed with Stage I appendix cancer in July 2011. On August 10, 2011, they removed the right portion of my colon and test 11 lymph nodes, which were all clean. I cannot find much information on this type of cancer. Does it come back? I will find my pathology report and come back with more information for you. I appreciate your blog. Thank you!!!!

Carolyn Langlie-Lesnik RN BSN said...

JR,

Thank you for your kind words! I'm sorry to hear you were diagnosed with this cancer, but you are one of the very few diagnosed at Stage 1, most of us are diagnosed at Stage 4. Did your appendix rupture? Sometimes if that happens, cancer cells "seed" the abdomen and the cancer recurs in the abdomen. I have a lot of information about the cancer on my web site www.appendix-cancer.com. Feel free to contact me via email it you'd like! Hit the contact button on the top of my appendix cancer web site!

JR said...

No, my appendix did not rupture. In fact, I had gone to the ER because of some tissue that go twisted off my intestines and it caused pain and inflammation. While the surgeon was in there he said my appendix looked enlarged and so he took it out. It came back Stage I and following the colonoscopy he found no other cancer in the colon. They took out the right portion of the colon (forget official name) because the margins of the tumor indicated it was necessary. All lymph nodes clean and they tell me I am cured. Do you really think that's possible?

Thank you for your help and response!