Monthly Archives: February 2012
So we’re into our second week of treatment and Gorman continues to feel good. He has noticed a little fatigue in the late afternoon but nothing really debilitating.
Those of you who really know Gorman know that he has for many years walked an hour an day, seven days a week. In fact, several folks around Fairhope have mentioned they have missed seeing him on his daily walk. He’s now back to walking 15-30 minutes every day, depending on his energy level.
Our dear friends continue to bring flowers, send notes and cards and bring delicious food. We are blessed with friends who are very good cooks. Gorman says he is going to defy medical science and be the first man to ever gain weight while undergoing chemoradiation. Needless to say, his wife is right in there with him!
To end today’s postings on a more positive note, when we first met with Dr. Sawrie, our radiation oncologist, he acknowledged the scariness of our situation but said that he has patients with Gorman’s diagnosis who were three and four years out and defying the odds so we’re planning on Gorman being Dr. Sawrie’s “star patient” three years from now!
This is a little milestone for us, the first week of chemoradiation is finished! We drank a toast to that last night. Praise God, Gorman continues to feel good with no side effects. The hair shaved from the right side of his head at surgery has mostly grown back and he hasn’t started losing his hair, although we know he will but the funny thing is that he doesn’t have to shave as often these days…odd, huh?
People often ask me specifically what they can pray for. Of course, we pray for healing and God’s peace and strength but, beyond that, try not to get too specific but leave it in God’s hands. However, what the oncologist told us at our first appointment seems etched on my mind: if Gorman completes six weeks of chemo (Temodar) with radiation followed by six months of monthly doses of Temodar, he has a 25% chance of being alive and disease-free after two years. Please pray that Gorman falls within that 25%.
Today was Gorman’s third day of chemoradiation and he’s feeling fine. This “state-of-the-art” radiation machine has reduced the treatment time to just 15 minutes and he says it’s not nearly as uncomfortable as a MRI. So far, no nausea from the Timadar. In fact, he omitted the Phenergan pill (anti-nausea) last night and still felt just fine. Of course, he may need it as time goes on but for now it doesn’t seem necessary.
We have not been to a Sunday morning church service since Gorman’s surgery. We’re not sure we could sit still that long nor focus but our church, St. James Episcopal, has a healing service every Thursday morning and we’ve attended that each week. It has been such a blessing. After communion, our priest places his hands on our heads, praying for healing, and anoints our forehead with oil. For hours afterwards, we can get a whiff of the scent of cloves, reminding us of that healing prayer and it’s so comforting.
Gorman’s radiation begins on Monday. Yesterday we went to Dr. Sawrie’s clinic, Gulf Coast Cancer Center, where we had a trial run with the big machine and Monday we will begin radiation five days a week for six weeks. We had a small hiccup with the chemo pill, Timadar, because it was to be mailed to us and would not arrive until next Wednesday. The oncologist, Dr. Meshad, wanted Gorman to start taking it Sunday night so at his Mobile office he was able to gather up enough pills to last for a few days and sent them over to the Eastern Shore by courier. We also picked a prescription for Phenergan for nausea. Every night before bedtime, Gorman will take a Timadar, along with the Phenergan. We are a little anxious about treatment but mostly glad to being making a start. As Gorman says, “I’m ready to kick this stuff in the a**!” Fortunately the radiation is done here on the Eastern Shore so we have only a 20 minute drive each day.
We are both trying hard not to jump out into the future and wrestle with all the “what ifs”. We pray together and try to just live each day but some days are better than others. God continues to give us strength to deal with this and, thanks to Tylonol PM, we sleep pretty well.
Thanks to all our friends for keeping us in your prayers. We feel those prayers and that helps so much.
Gorman continues to feel fine physically and we celebrate that. After weeks of precious friends bringing us delicious dinners, treats, etc. we will try to manage on our own this week before his treatments begins. He’s even back in the kitchen a little! He cooked salmon last night and it was fun to see him in there wearing his Emeril “Bam” apron.
We do everything together now. When I run errands, Gorman goes with me. One day, after visiting Walgreens, the cleaners, the meat market and grocery store, I turned to him and said, “Welcome to my life!” That is a quote from our three-year-old grandson, who got it from a cartoon. We treasure every minute together.
When I talked to Dr. Nabors (neuro-oncologist at UAB) last weekend, he talked about the possibility (not probability) of our participating in a clinical study after Gorman’s radiation and chemo. It is called PI3 Kinase inhibitor and is done during the maintenance phase of treatment; however, there has to be a slot available at that time so that’s iffy. In the meantime, our sons Charlie and Grady, are researching clinical trials everywhere.
On Friday we will learn when radiation and chemo will start but it appears it will be next week. He will have radiation five days a week for six weeks, along with chemo in the form of a pill, Timedar. We are told the side effects are not as severe as with standard chemo so that’s a blessing.
Well, this weekend the ox has been in the ditch. Gorman has dealt with the UAB news much better than I have. I know God is in control and that he closes all the wrong doors and opens the right ones but that hasn’t helped me. I tell myself that there is probably a better clinical trial out there for Gorman and that’s why he didn’t get in this one. I know everyone is praying and I’m counting on that.
Well, we received word from UAB yesterday that Gorman does not qualify for the ICT-107 clinical trial because of that business about needing to be HLA positive. Forty percent of the population is not and now we know that includes Gorman.
I plan to call Dr. Nabors (UAB research oncologist) to see if he has any other ideas but we will go forward with the radiation and chemo.
No word yet from UAB about the clinical trial but we have decided that, if Gorman qualifies, we will join the trial. If he doesn’t, then it wasn’t meant for him and we’ll carry on with radiation and chemo. We’ve put it in God’s hands.
A Clinical Trial?
On Monday, Feb. 6, we went to UAB in Birmingham to checkout a clinical trial called ICT-107 for newly diagnosed patients with GBM (glioblastoma). It is being carried out at 25 cancer centers throughout the US and is showing some promise. Basically it involves harvesting stem cells, treating them and six weeks later, after radiation and chemo at home, returning to have the treated stem cells injected back into the body. It was a grueling day, made a little easier by the Research Nurse Coordinator, Cathie Robinson, who spent the day with us as we went through each department; Radiology for the MRI; lab for the blood work, etc. We met with the neuro-oncologist, Dr. Burt Nabors, who was so nice. I think he would have spent hours talking with us if necessary. So now we are waiting to learn if Gorman qualifies for this trial by being HLA posititive. If he is among the 60% of people who are HLA positive, that means he has the ability to bind the injected stem cells. If not, he will not be able to participate in the clinical trial. If some physician is reading my description of this process, he is probably laughing but this is the general idea. We should hear about this tomorrow or Friday. Then Gorman has to decide if he want to proceed with this, which is not such a “no-brainer” as it sounds. A clinical trial usually means 2/3 of participants get the vaccine (treated stem-cells) and one-third receive their stem cells untreated. It is a blind trial so none of the folks at UAB, including the doctors, know who gets the vaccine and who is in the “control group”. It is daunting to Gorman to think of spending much of the next few years (if he has that much time) driving up I-65 when it may all be for naught.
When I had the idea of this blog, I determined that I would not go on and on, boring everyone to death but here I am. It’s hard to sum up in a few words, intricate issues and complicated decisions, not to mention the ongoing turmoil that follows us each day, often punching us in the stomach but I will end tonight by saying that we know our God is holding us in the palm of his hand. He has seen us through some dark days in the past and we stand firm in knowing that He will see us through this trial.