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Posts tagged ‘Clinical trial’

Meh :/

Underwhelmed…that pretty much describes our trip to see the research oncologist at CTRC (Cancer Therapy and Research Center) in San Antonio. We met with Dr. Lu last year after Paul had his Whipple procedure. We actually started his first go round of chemo with CTRC but moved it to the Corpus Christi Cancer Center when it was determined both facilities would do the identical treatment. It just wasn’t worth the drive 2.5 hours each way when we could do the same thing at home.

So we caught Dr.Lu up on all the treatments and surgeries Paul has had to date and answered all his questions. We also provided him the slides and reports from his baseline PET scan and the one he had on May 25th. Dr. Lu took all that info to the study coordinator. After about a 10-15 minute wait he returned with 2 packets in his hand. Apparently there were only 2 Phase 1 studies he would be eligible for and we should take them home and read them and decide if we wanted to participate. He recommended one over the other but he really didn’t “sell” either of them to us. It was sort of like “meh…we can try one of these….I guess…” so we weren’t exactly left with the warm and fuzzies. He encouraged us to investigate other hospitals and even recommended another research facility right down the street. He also said it would be a good idea to contact MD Anderson and other large cancer hospitals and they may have other clinical trials we would like to try.

The first clinical trial, the one he recommended, was the testing of a drug that is currently being used to treat patients with prostate cancer. After reading the details of the study it appears they are simply looking for people with incurable cancer to submit to testing to see how much medication they can tolerate. There was nothing about the possibility of this drug improving his chances of survival. So yea, no thanks.

The second trial was a little more interesting in that there was a possibility it could shrink tumors and increase life span. That drug required 21 days of administration and 7 days off. Total test time was 6 mos. Paul and I are totally prepared for the possibility of his having to relocate during a clinical trial but this one just didn’t blow our skirt up so we are going to continue looking.

Maybe it’s unrealistic to expect someone to be happy to see us as a potential clinical trial subject. We were hoping someone would say “Oh yea! This one is perfect for you!” or “This one is going to be your best shot”…..something other than “lets throw this against the wall and see if it sticks”….that just didn’t inspire confidence.  So again, the search continues.

After our appointment we got to meet with financial advisers. That wasn’t fun. Very nice ladies  but it became very clear our lack of insurance was going to be a problem. In their experience the VA won’t cover this and sadly, my insurance won’t either since Paul falls under “pre-existing condition”. Some of it, like the actual experimental drugs are usually covered by the drug company but other things, like pre-trial testing (blood work, PET or CT scans, office visits, etc) will NOT be covered…..and they are incredibly expensive. I assured them I know how to make noise with the VA and they also gave us a few resources on how to obtain insurance for the uninsurable. As of right now we are considered a “self pay”. I am considering asking if they will accept one of my kidneys in exchange…..probably not…..

So that’s pretty much the scoop. We are exhausted and are looking forward to a good nights sleep so we can start again tomorrow. We continue to pray God will lead us to where we need to go to find Paul a cure.

–L

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Enjoying Good Health!

I have to confess…..I am happy we got a 2 week reprieve from chemo…..Paul looks and feels GREAT and I just want to hang onto that a little longer…..

He has really come a long way in changing lifestyle habits. You know, it’s kind of hard teaching an old dog new tricks…..but in typical Paul fashion when he “buys in” he is in 100%…..and his body has made it clear these are nonnegotiable! So he takes a little walk in the afternoon, eats the right foods and eats several small meals and/or snacks a day, rests when his is tired…..

I mean, if we are being honest here, and I always am on my blog, I have to confess I wasn’t sure how this was going to go. I mean, for those that don’t know my husband, he can be a little stubborn sometimes……If there is something you DON’T want Paul to do, tell him he HAS to do it……’cause he will dig his heels in and quietly say to himself “she can’t tell me what to do” and just won’t do it…..there will be no spectacle….there will be no big blow up…no stomping around puffing up his chest or anything……just a quiet refusal to be TOLD what to do…..*sigh* ……

But truth be told he knew even HE could not deny the requests his body and spirit were requiring so thank God he bought into all this pretty early on and his health these last couple of weeks has been AMAZING! He looks great, feels great and is even practicing horns again and not wearing out like he used to…..and I think we both need to experience that for just a little while longer…..

False Start!

I am reminded of my days in competitive swimming when you are on the starting blocks and one swimmer inevitably dives in before the buzzer resulting in a “false start”. That’s kind of what happened at CTRC today.

Paul had shown interest in participating in the clinical trials for a Pancreatic Cancer Vaccine and that is what delayed todays chemo appointment. Apparently, we were supposed to have some blood work done and one injection of the vaccine BEFORE starting chemo. So we got him to apply to the study officially, signed all the consent forms and did the blood work to make sure he qualifies. They will call early next week to see if he qualifies and he will either get chosen to receive the vaccine or be a test subject who will NOT receive the vaccine. If he is selected to receive the vaccine we will drive up to S.A. next week and get the shot then go the following week for the first round of chemo. So miscommunication resulted in a two-week delay….but we are good with that. If there is ANY shot he can get this experimental vaccine we want in on it.

Other than that Paul also got his last small tube removed. He didn’t feel a thing……I thought I was going to BARF! I am sorry, but I can’t get used to watching a doctor pull a 2 foot long tube that looks like a huge worm out of my hubby’s insides! UGH! I am NOT cut out for the medical field OBVIOUSLY!

Paul also got a prescription for some enzymes to help digest food better….especially if he indulges in something with more fat or cholesterol than usual. I really thought they would have given him those by now, as recommended by our friend who is 5 years into his whipple/cancer fight…..but they wouldn’t give them up until today. Paul hasn’t had a diet snafoo in a while….he has gotten pretty good at regulating his food consumption along with appropriate rest and exercise….but this will be another tool in the arsenal to make sure he continues doing well.

So the trip wasn’t a total loss although the chemo was delayed……but he has a couple more weeks to feel good and play some music and have some fun……..

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