Update on Consultation

This blog is mainly an update from our visit to Johns Hopkins since that was the big trip scheduled last week. I appreciate everyone's well wishes; it's always difficult to go to a new setting, meet new people and discuss your situation. All went well.

Johns Hopkins - As I mentioned, we've been looking for other recommendations for additional therapies by a major cancer center. Johns Hopkins offered that opportunity through their interdisciplinary team approach to provide a 1-day consultation. On Tuesday, I and eight or so other candidates met at the large Johns Hopkins hospital and outpatient center; it's like a campus set amidst Baltimore. After our CT scans, we all meet in a conference room and were given a general briefing. The idea of the effort is that one doesn't always get the convergence of many disciplines about one's cancer. This approach offers perhaps more information at once and less conflicting viewpoints. On staff is a nutritionist, pain management specialist, surgeon, radiologist, and oncologist. They view the relationship with us patients as one that can continue and as a collaborative approach with our home base treatment centers. They invite followup questions and consultation.

Each patient is given an office to wait in and then the different specialists make their rounds. I met with the nutritionist and she provided a list of guidelines and some recipes. A research scientist asked for participation in a research effort and so we had some paperwork on family and medical history to provide there. The pain management specialist reviewed my pain medication and said that we seem to have a good approach. Then I seemed to be at the end of the line because John and I waited from 1:30 to 4:30 before the radiologist and oncologist met with us. (Fortunately I was reading the latest Steig Larson suspense novel so it wasn't so bad!)

Basically the bottom line from the radiologist and oncologist was nothing too new or innovative. The radiologist recommended that we add different chemo drugs to the gemzar to get a bigger impact on the tumor. Additional suggestions included the addition of curcumin (clinical trial), stereotactical radiation (go with experienced providers) and exercise. I had a list of questions that Amy, my naturopath, had such as 1) Do they know of Dr. Lentz's work on plasmaphoresis - washing plasma of the 2 blocking factors that prevent TNF from acting to kill cancer cells? 2) Am I a candidate form hyperthermia and what do they know of that therapy? 3) Can they refer me to chemical sensitivity testing if recommending additional chemo drugs? 4) what do they know of immunotherapy? The oncologist was very open and interested in discussing. Unfortunately, I should have had Amy there because I don't have a lot of knowedge to have the discussion. The oncologist was not aware of Dr. Lentz's work but was with plasmaphoresis; didn't know if I was a candidate for hyperthermia, but was aware of Joan Bull's work; wasn't opposed to referral for chemical sensitivity testing, but you need enough cells to test and it's expensive; and had done work on immunotherapy and was interested in discussing.

They will provide a report to us and our providers and the results may be more concise than what I convey here.

Otherwise, we enjoyed our trip to Baltimore. We had been there before - John happens to be a long time Orioles fan (we teased him that that's why he wanted to come to JH!). Unfortunately the Orioles were out of town. I wanted to go back to the National Aquarium and be in seawater, watch fish and jelly fish. However, that excursion was more like watching thousands of bobbing heads running from one view post to the next yelling excitingly about what they saw and they saw it first! Not the relaxing ebb and flow of seawater! We met up with Annie, Molly's friend, who just moved there a month ago while her husband, Travis, attends art school. We went to a great juice shop, Liquid Earth, where I had some carrot and greens juice and a wonderful miso soup with hijiki. Annie just started working a gormet, farm-to-table restaurant called Woodberry Kitchen. She made reservations for us - the dinner was excellent and is exciting to know where every morsel of food comes from and is local.

Featured Friend

One of my oldest (in years of knowing) and dearest friend is Beth McKenzie. We became fast friends our sophomore year in high school and have had many adventures together. That spontaneous laugh we have over a day's event or experience is the imprint of my bond to Beth. Interestingly, we've not lived in the same town since high school - I went to MSU; she was a UM brat. Then I eventually settled in Missoula and she lives in Bozeman (still a Griz fan of course!).

She's been one of my biggest cheerleaders on the cancer front - getting me resource material - the Suzanne Somers book on doctors who cure cancer was great help.

She's also provided me with two "daughters", Whitney and Madison, whom I love dearly and introduced me to her great network of friends. Beth hosts an annual "ladies weekend" at her cabin on Echo Lake and there I've gotten to know and enjoy Nina, Kate, Kim, Angie, Flip, and Vicki.

Thanks Beth - you're the best!!

Comments? I continue to roll on thru enjoyable movies - thanks! Some good ones - Couples Retreat, Soapdish, Bowfinger, Bagdad Cafe, The Answer Man, The Ugly Truth....and more.