Reposting as requested.

Notes from conference

I have gone over my notes from the conference yesterday and will try to summarize as best I can.  Dr. Eng and the two other professionals who spoke were quite squeezed for time, so they zipped through everything really fast, so my notes are sketchy, but here goes.

Dr. Eng

1. The most important thing she said, IMO, was that radiation treatment should be done with breaks of NO MORE THAN ONE DAY for the best possible results.
2. For treatment of mets, go to a facility that has lots of experience in treating mets.
3. Patient comfort is vital to a patient’s ability to complete their treatment.
4. Patients should have a multi-disciplinary medical team, including PharmD for instructions on medications and a gynecologist to monitor for issues related to HPV/treatment.
5. She uses Cisplatin in place of Mitomycin on her patients, due to decreased toxicities.
6. Side effects can include radiation dermatitis, fatigue, urinary tract infection, low blood counts, diarrhea, mouth sores and radiation enteritis.
7. Post-treatment follow-up should include DRE and proctoscopy.
8. Radiation can continue to work for 24 weeks post-treatment.
9. No biopsies until atleast 24 weeks post-treatment and then only if indicated.
10. She recommended Metamucil.
11. This group of physicians is working on establishing a standard protocol for follow-up.
12. She recommends only 5 weeks of radiation
13. Follow-up needs to include regular gynecology visits
14. Follow-ups with a colorectal doctor should be every 3 months for 2 years, then every 6 months for an additional 3 years.

Shelley Smith DeCecco, PT, Phd, CLT-LANA:

           She highly recommends therapy for pelvic floor issues and lymphedema, which are her specialties.  Pelvic floor therapy is helpful with painful intercourse.

Stephanie Boyea, MS, RD

1.  Instead of BRAT diet:

Small, frequent meals every 3 hours

Low fat, low soluble fiber

Low lactose

Low insoluble fiber (less than 2 g fiber/serving)

2.  Diarrhea Management

No artificial sweeteners

No caffeine

Add bulking agents (psyllium, pectin, potatoes, oatmeal)

Lean protein

More than 12 cups of fluids/day

3. Constipation Management

Stool softeners

Osmotic laxatives (Miralax)

4.  Appetite Simulants

Parenteral nutrition

IV fluids

Oral lactose enzyme

5. Survivorship Side Effects

Abdominal cramping

Diarrhea/Constipation

March 21^st. is Anal Cancer Awareness Day, supported by www.AnalCancer-ABumRap.com.  Please check out their website.

The HPV and Anal Cancer Foundation has a Peer-to-Peer Program for support.  If anyone is interested in participating in this program, please go to their website at www.analcancerfoundation.org.

I met and talked with Justine Almada who, along with her sister Camille and brother Tristan, founded this organization after their mother was diagnosed with and died of anal cancer.  They are all very committed to this organization and it is one of our best hopes for improving treatment, raising awareness, and working towards prevention.