CURE Patient & Survivor Forum Report

[Surveyor]

My wife and I attended the CURE National Patient & Survivor Forum in San Diego on Oct. 15 & 16. We enjoyed it and would recommend it to anyone who can attend a future forum. Notes and thoughts would include:

• CURE will hold 6 conferences in various places across the nation in 2006.

• Hopefully, all of you know CURE is a free magazine for all who apply. I’m going to review past articles at: http://www.curetoday.com/ as soon as I have time.

• The conference would be of great benefit to those who are just starting their cancer journey.

• The cost was low ($50) because of a number of sponsors. The hotel was great and worth the $119 per night in high priced San Diego. The sponsor exhibits were interesting, helpful and not “pushing” their products. Besides that, they all had nice little freebies (pens, radios, thermometers, etc.) and provided a decent continental breakfast both mornings. The first thing they did was give you a bag (about the size of 5# of potatoes) full of goodies.

• The CURE staff was wonderful and the speakers were almost all great. They presented a number of angles to the disease.

• I had lunch with Dr. Phillip Berman (2 year Stage IV NSCLC after testicular cancer). His blog site is www.redtoenail.org. I attended his interesting keynote speaker address Sunday called: The True and Full Confession of Dr. Doom. If you email him and request the list of 20 supplements he takes, he will email them to you. Dr. “Doom” also recommended Dr. Gurgevich's Amazing Hypnotic Tonic as a C.D. that he wore out listening to early in his cancer battle.

• The Complementary Breakout Session on Herbs & Supplements – Linda Smith from Duke University was good. I think all of the attendees wished the session would have been longer. I also think it is good that Duke University is looking at the holistic side of treatment and not just concentrating on chemotherapy. One member of the audience said supplements are deductible from your income taxes if they are prescribed by a health professional (not necessarily a doctor) according to the tax code. Ms. Smith mentioned that most cancer patients have low amounts of CoQ10 in their blood.

• Kathy LaTour was a Keynote Speaker and member of CURE staff. She is an interesting person, great speaker, aggressive breast cancer survivor, and worth the trip to San Diego for me.

• Dr. Jonathan Dowell spoke about Breakthroughs in Lung Cancer, but it was mostly a review of newer chemotherapies that we’ve discussed on this forum in more depth. I found his short discussion of hemoglobin levels interesting. Apparently if it falls below 10 (Indonesian rubber worker study) there is reduced energy and cognitive abilities. My notes indicate he thinks the cutoff maybe around 12.85. Since chemotherapy really hits our blood levels, I found this interesting. After 1 ½ years, my hemoglobin (and other counts) is still low. He mentioned dexmethyiphenidate (a relative of retalin) for energy and cognitive improvement. I did a google search but could not find out much except that dexmethyiphenidate (fosalin tablets in 5 & 10 mg) were provided free to needy patients on some websites. Does anyone have experience/knowledge of dexmethyiphenidate?

• Another keynote speaker was Daniel Shapiro who presented an uplifting and entertaining talk entitled “Mom’s Marijuana.” I think he wrote a book by that name.

• I had the most fun in a Complementary Breakout Session on “Healing through Movement & Exercise” by Sherry Lebed Davis. Now doesn’t this sound like something we all need? Well, it turned out to be directed at breast cancer. I was one of 3 males (1 left right away) and about 35 women. It ended up that I had more laughs and fun in that class than the rest of the forum combined. Sherry Lebed Davis and the rest of the “girls” were great!

• I wasn’t too excited about the “Meet the Authors: Wine & Cheese Reception,” but it turned out to be fun. A few authors were there selling their books, but they really seemed more interested in just talking and sharing. They were all very interesting. I also met a Dr. Peter No from Hawaii. Peter had taken the body fat test with my wife and she said he had “0” body fat and he nearly did – that started the friendship. Peter was a cancer surgeon, but has started leaning more towards the holistic approach to cancer. Nice to talk with a doctor who isn’t so positive that western medicine/techniques has all of the answers.

• Other websites mentioned at the conference: www.cansurvive.org and www.cancerguide.org.

My best wishes to everybody.

[tnmynatt]

Thanks for all the good information. Don't know anything about the dexmethy. Have read about Provigil and seems like some other drug. Take care.

Thanks again. Very interesting about the red toe.

[Nancy B]

Thanks Surveyor, for taking such good notes. It was a fantastic weekend. I really enjoyed meeting you and your darling wife. Wish we had more time to get to know each other. Hope you can come down for the Wellness Community's "Frankly Speaking about Lung Cancer" in November.

I didn't learn much more about my cancer, but the break-out workshops were great. There was Spiritual Fitness (not necessarily religious unless you wanted it to be), Healing Touch, You Can Handle More than You think You can, and Walking Well. The lung cancer doctor didn't mention SCLC and when I asked him why he said because there aren't any really new drugs on the market. He focused on NSCLC and the several new drugs just out this past year or so.

A great weekend. Next year the CA one is in San Franciso and I plan on attending. Everyone was so nice, especially Surveyor and his wife.

Nancy B