Tuesday, September 22, 2009

Hope for a Clinical Trial

Ah, there's nothing better for the soul than a beach vacation. We returned on Sunday from a week on Sanibel Island with our friends, the Dowells. Inactivity would be the best way to describe my time in the sun. Rifkin relented just a bit and gave me permission to swim for a short time in the sun. So every day I took a swim in the Gulf. Otherwise, I hid under the trees or in the condo, took daily naps and ate seafood. We had a fantastic, relaxing time; only to have to face the blood draw and meeting with Rifkin on Monday.

On that front things remain about the same. White count at 2.9; hematocrit at 28; hemoglobin at 9.9; platelets at 108 and IGGs at 3700. Rifkin has spoken with the principal investigator at the Mayo Clinic in Scottsdale, AZ about my participation in the pomalidomide and/or carfilzomib clinical trial. Portions of my records will be sent there, as well as to M.D. Anderson in Houston, to determine if I qualify. If so, we then have to investigate whether I will need to be on site for the trial, or part of it, or whether Rifkin can oversee my participation here in Denver. He thinks it unlikely I'll be able to stay in Denver. We should learn more at our next visit in 10 days. Either way, it seems to me to be an improvement over Little Rock. Susan's brother lives in Houston so that would be the preferred site for us if I have to stay for any period of time.

The prospect of spending another winter fully engaged "in treatment" is not the most appealing thought. But, I don't think this will be even comparable to the aggressive treatment I underwent in Little Rock. I've read the blog of at least one patient who has been in the pomalidomide trial at Mayo in Rochester for over a year. I think he now goes in for testing only once a month. Could I be so lucky? I know we have to do something, as my energy is waning, whether due to the cancer, the steroids, or something else, no one knows. But I do feel it's time for some action. Anyway, I guess I continue to be the guinea pig for the comparison of the two philosophies: blast it or control it. Blast it didn't work, so let's control it. Keep those new drugs coming. To support that cause go to my Light the Night site: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN

As I felt my mood start to dip with the thought of another round of treatment in some foreign state (I love Colorado and hate to leave), Susan confidently told me to cheer up, we'll get through this, and she'll go with me wherever I need to go. What would I do without her?

And a brief update on the girls: Julia's paid summer internship with the Colorado Dept. of Health has turned into a full time position. She has already begun work as an Environmental Health Specialist and will be doing health inspections at restaurants, day care facilities, condemned residences, as well as other public health duties. She is quite excited. Although Julia was ready to move into her own apartment if she got this job, given the probability that Susan and I will be taking up residence in either Houston or Scottsdale, she has delayed those plans. I guess it's OK to live in the parents' house so long as the parents aren't there. Catherine began work for Yahoo! this week and has also managed to find a studio apartment in NYC (probably the size of a closet!). She says she loves the city and is also very excited about her new job. Susan is already plotting when she can go visit.

and that's about all for now. I'll report once we see Rifkin in 10 days and we know whether we're going back on the road.
Love to all,
Dan

7 comments:

Big Frank Dickinson said...

Dan,
I'm glad you and Susan had a good time in Florida. Texas or Arizona -either will be a cakewalk after Little Rock!

Tom

Seal Family said...

Welcome back!! It sounds like you both had a relaxing time!! Love.The Seal Family

John said...

Houston in the winter may not be all bad. Good luck with being accepted into the trial.

sigun said...

Yes, good luck with being accepted for the clinical trial in Houston so that you and Suz can be with Gary. Will keep our fingers crossed. Bises,Sigun.

Howard said...

Fuzz,

Keeping my fingers crossed for either one. Personally, I would take Scottsdale over Houston, but anything south of the ND line is acceptable.

Doug Kappel said...

Houston is nice and I will come down to visit----that might make Scottsdale a better choice ??? Don't listen to Howard tho----he was always on the wrong side of the tracks.

scoopondan said...

Hey hey guys, let's not start that north side/south side fight here on my blog. I take advice from all quarters these days. Have a great weekend.