I’ve been meaning to do this, but needed to learn how to use Google Drive! I’m a college professor and have avoided it up until now, though I know it’s supposed to be a great thing, and maybe even supposed to help me keep from paying for Office?
I wanted to share the webinars another advocate, Jennifer Ranker shared with me. Jennifer Ranker is also a cancer survivor (I believe colon cancer) treated by Dr. Sardi. Those with colon cancer who have had the cancer spread into their abdomen can also be treated with cytoreduction surgery and HIPEC, the same treatment as for appendix cancer. This treatment is also now being used for other cancers that spread into the abdomen, like ovarian cancer. She also has a private Facebook support group, Peri-Met-Tropolis. She has done Zoom webinars with Dr. Sardi as I was hoping to do, so Dr. Sardi put me in touch with her since I am now doing Zoom support groups.
I am attaching two of the webinars she has already done that she told me I could share with my constituents. They are very good. Since I want to do this also, she is talking about she and I working together to do another with both of us getting questions from patients. We have both already started doing this.
Please send me any questions you have, and enjoy the webinars! Would love to hear your feedback! Dr. Gushchin is an excellent specialist also. Dr. Sardi said if he needed cytoreduction surgery, Dr. Gushchin would be his surgeon. Please let me know if you have any problems. I just learned how to retrieve and share from Google Drive :-). These webinars offer excellent information!
Hope these are helpful to you! And thank you to Jennifer!
I need your help! Dr. Sardi, a renowned appendix cancer specialist, will be participating in our Video Meeting. I need questions any of you would like to ask an appendix cancer specialist. He will be doing a webinar for us! Please email your questions ASAP to:
Look forward to seeing your questions!
Wanted to post this. I have a new patient who attended our Zoom meeting and read my website. She compiled this list of things she learned. I liked her list a lot!
These are some key messages running through the materials on your website, and they surfaced quite naturally in the Zoom meeting. For example…
- the importance of self-advocacy – practitioners can’t be experts in all rare diseases and probably won’t have time to research yours, and it’s your life in the balance
- appendix cancer is not just another form of colon cancer – it requires different treatment
- the need to get advice from a recognised expert in appendix cancer as soon possible – before starting a treatment plan
- that extent of tumours does not mean that your cancer is untreatable
- cytoreduction and HIPEC is the treatment of choice, but you need someone who is an expert in cytoreduction to get the best possible outcome
- some specialists are much better than others, it’s ok (and maybe even vital) to shop around,and you may need to travel to access the care you need.
- if specialist expertise isn’t accessible to you, perhaps due to Covid travel restrictions, you may need to engage, educate, and connect your physicians to expert advice.
Our virtual support group met online today and it was GREAT! There were 6 of us there and we were international! One from New Zealand and one from Hungary, the rest from the USA. It was so good to be able to see and talk to everyone, even though it would have been nicer if we could have all met for lunch. Never know, maybe someday!
We have decided to meet once a month. It will continue to be Saturdays at 12 noon Central Time as that time worked even for the international attendees.
We are meeting on Zoom and I will send out invitations a week before the next meeting. To request an invitation, click “Video Meetings” on the home page (www.appendix-cancer.org) and sign up to receive invitations to the support group. Would love to see you there!
if anyone has trouble logging into the Zoom meeting today, you can text me at 219-776-9913. Carolyn
This is the link to the article in Cure about appendix cancer, posted the wrong link yesterday I think!
Cure Magazine : Appendix Cancer