Sunday, March 28, 2010

Methodist Hospital Campaign Poster Girl, Cocci Study Group in Surprise AZ

Denise's story was featured in the 2009 year-end fundraising campaign letter for Methodist Hospital in Arcadia, the hospital where her journey with cocci began. The hospital is building a new patient tower. I can't find a link on their website to the publication with Denise's story, but here's a link to the Methodist Hospital Foundation site. If you happen to be fortunate enough to have money to give away to a good cause during these stressful economic times, Methodist Hospital is a worthy organization to consider.

I just got back from the 54th annual Cocci Study Group held this year in Surprise AZ. My aunt Jackie the nurse went with me to explain much of the medical jargon. As usual, it was very informative. This year was especially interesting since they dedicated a big chunk of the program to cocci during pregnancy. Some highlights & factoids that I found interesting (and I hope I understood the information to accurately record it here):
  • There's not much data on pregnancy & cocci. According to data from 1988, among 47,120 pregnancies (I didn't catch which city/region), only 10 women had cocci, another 4 were probable cocci. Only 4 of those 14 had disseminated cocci (apparently none with meningitis), and 3 of those 4 survived. So as far as I'm aware, Denise is still the first I've heard of that survived a pregnancy with disseminated cocci meningitis.
  • Several cases were presented in which pregnant women with cocci that used fluconazole gave birth to children with similar multiple birth defects (described as being similar to those of Antley-Bixler Syndrome). Several of the children died in infancy. So fluconazole in the 1st trimester is definitely bad, unknown effects in 2nd & 3rd trimesters. As such Amphotericin B is regarded as the best bet for treating pregnant women with cocci.
  • In several cases, pregnant women with cocci have delivered healthy babies, but then the women died 9-19 days after giving birth. So it was proposed that placentas be looked at for stem cell research, as there may be something there with protective properties against cocci.
  • The most severe cases of cocci appear to have acquired their cocci infection during the 2nd and 3rd trimesters, rather than having had cocci prior.
  • Women that have cocci should not use oral contraceptives. It appears as though estrogen may allow cocci to grow faster (try the injection contraceptive Depo Provera instead I assume). They should continue on azole meds and not get pregnant.
  • If a woman has cocci meningitis, she should NOT GET PREGNANT! That would be a very difficult situation indeed. Denise & I know this to be true, so the doctors were preaching to the choir on this point.
  • 2/3 of all U.S. cocci cases come from the stretch of the I-10 between Phoenix & Tucson, the "Cocci Corridor"
  • Weather patterns have changed and recent dust storms have blown dust from cocci-endemic regions to other areas. Expect to have more cocci reported in Colorado, Oklahoma, Wyoming, and Texas.
  • Nikkomycin Z, a promising drug that cures cocci in mice, completed safety testing in humans in September 2009 (healthy humans without cocci have been given the drug and not had any ill effects). The next step in testing (effectiveness) will take several years to develop, and 2017 was thrown out as a possible year to have it marketed. But that's only if big bucks come rolling in for it. Here's an article about it on the Valley Fever Center for Excellence site.
  • There's a skin test for cocci that's in the works that will likely be marketed under the name Spherusol. It was submitted to the FDA last year and will hopefully become available later in 2010.
  • A case was presented in which it appears that the patient had the problem of hypermetabolizing his cocci medication, making it less effective against the cocci. The medication is the same one that Denise is on now (voriconazole). But when they added cimetidine (Tagament), the levels of voriconazole improved. We're curious about whether Denise may have hypermetabolized the fluconazole that she used to be on, possibly explaining why the cocci progressed while on fluconazole. And if so, perhaps it's worth looking at again with cimetidine. The voriconazole is not yet a generic, so it's quite an expensive copay and has some side-effects that fluconazole doesn't have.
So there was quite a lot to wrap my head around. Fortunately, breaks & dinner after the conference offered a great opportunity to get time face-to-face with doctors & researchers to chat about Denise, as well as unwind and decompress. It turned out that we shared a table at dinner with a father/mother/son team that have been involved in cocci research for decades (dad since before 1960, mom has long been involved with the Valley Fever Vaccine Project), and the son even co-founded Valley Fever Solutions with Dr. John Galgiani as an extension of the work at the Valley Fever Center for Excellence for the purpose of commercializing the aforementioned new drug candidate, Nikkomycin Z. We wish him success, and in a hurry.


Blogger diane and alan said...

I'm so glad you have a group that can understand easily when you speak about your needs. I can only imagine how good it is to be able to say how God has been your strength. We'll keep praying as He continues to hold you all up. dj

April 26, 2010 11:03 AM  
Blogger Sandra said...

Hi Phil and Denise,

I'm sorry I didn't meet you when you were at the 53rd conference in Bakersfield. I wasn't able to attend the 54th in Surprise as I had some grandmother duties to attend to! I appreciate your blog and the information it contains. If you are inclined to do so, we need some help flooding Sacramento with letters urging our legislators and the governor to continue support for valley fever research funding. One million for this coming budget year was just zeroed out by budget subcommittees, and we don't have enough local funds to pay for the planned research. It is important not to lose ground on what in in progress! There is such a large population in Southern California, that it would be very helpful if legislators in your area could be educated about Valley Fever and asked to support continued funding.

May 13, 2010 10:02 AM  

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