Virtual Support Group

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!

 

 

Cure Magazine

Hi all!

For all who asked to be invited to the video meeting, our virtual support group, I sent out invitations.  We will meet this Saturday at noon!  It will be an international group, one from Hungary and one from New Zealand!   I sent the invitation to about 13 who requested it.  I’m looking forward to finally meeting some of you!   I’ll post later to give you an update on what transpires.  I think it will be a very good thing for all of us.

I got a Zoom account for the non-profit  as I am a professor who is teaching my classes on Zoom since the Covid crisis, so am very familiar with it.  What I like about my virtual classroom is we all keep our mute off and our video cameras on, so we can see each other and have conversations.  It’s the next best thing to being in class together!   I’ve even used Zoom for family meetings.  I am also a CASA (volunteer Court Appointed Special Advocate for abused and neglected children) and I will be participating in court proceedings via Zoom or a similar program.   I’m doing my faculty meetings for work via Zoom.  I’ve always disliked being videotaped, but I’m getting used to it.  I have to remember now when I turn on my computer if I am going to be on camera!  The other day I opened my camera in a meeting and stopped….had I brushed my hair???  Brave new world….

Good news, Cure Magazine just did an article on appendix cancer!  It is a very good article.  I was interviewed and the non-profit was mentioned.  There is a picture of me in the article that is up to date.  I need to replace my Facebook photo with this one, I’ll instantly age on Facebook :-).

This is a link to the article (just updated the link!):

file:///C:/Users/Carolyn/Downloads/CURE-Rare-Cancers-2020-Appendix-Feature.pdf

Hope you are doing well!

Carolyn

Arizona State University Study: Effects of Cancer Diagnosis on Sleep

If you are interested, Arizona State University asked me to invite you to participate in a study about a cancer diagnosis and its effect on sleep quality.  The link below is to a flyer about the study that will give you information on how to participate:

Arizona State University Sleep Study

This study is an 8-week intervention with a 4-week follow-up period. Interested participants complete an eligibility survey to see if they are eligible to participate. If they are, we have them review an online video providing an overview of the study, review an electronic informed consent, and then ask us any questions they might have before signing the consent and being randomly assigned to one of two different groups. Both groups participate in app-based activities for 8 weeks and then complete self-report symptom questionnaires at baseline, week 4, week 8, and week 12 (after a 4-week follow-up).

Vitamin D

I attended a presentation of Dr. Michael Holick’s at an annual meeting I attended of the American Association for Cancer Research.  Dr. Holick has studied Vitamin D for 30 years. He received the Linus Pauling Award for Health Research in 2009 related to his work (after he was fired from his professorship in dermatology for promoting healthy sun exposure).

His work brought many things to light.  Vitamin D is actually not a vitamin but a hormone, a hormone used by every cell in the body.  All immune cells have Vitamin D receptors.  Vitamin D deficiencies are now being associated with increased cancer risks, with autoimmune diseases like multiple sclerosis, rheumatoid arthritis and lupus and even with depression and psychological disorders.

Many of us living in the United States above Atlanta Georgia are vitamin D deficient, in part because we get so little sun exposure in the winter months.  We also have developed a phobia of sun exposure in the warmer months, so use sun block whenever we are outside in the summer, which prevents our bodies from developing our own natural Vitamin D.

It’s interesting that in some cancers are more prominent in the black population, whose skin pigmentation makes it more difficult for them to produce vitamin D when exposed to sun.  It’s also interesting that now obesity is seen as a risk for developing cancer, and vitamin D is sequestered in fat cells and not available for use in the body of those who are overweight.  Cancer is also a disease associated with aging, and as we get older, our bodies are less able to produce vitamin D from sun exposure.  The incidence of many cancers is greater for those who live in the northern United States.

Our bodies naturally produce 20,000 units of vitamin D in just 15 minutes when just our arms and legs are exposed to the sun in the  in the warmer months.   And there is no toxic effect from naturally produced Vitamin D.  It is felt that the current recommendations for vitamin D intake are too low.   We can’t obtain enough vitamin D from the foods we eat, so in the absence of sun exposure and without supplementing our vitamin intake, we will likely be deficient.  We can obtain enough vitamin D naturally with arms and legs exposed to sun in the summer months for 15 minutes 3 times a week.

As I have a history of cancer and autoimmune disease and live in the northern United States, I personally started taking large doses of vitamin D supplements, and several months after taking supplements asked my doctor to do lab work to see what my vitamin D level was….with supplementation, my vitamin D level was just in the middle of the normal range.  I encouraged my sister-in-law, diagnosed with breast cancer, to have her vitamin D level checked, her level was far below normal; her doctor has now put her on a prescription Vitamin D tablets.