The PRRT infusion went according to plan yesterday. It made me feel sick and tired, but a little less so than the first time. The worst part is the amino acid IV. For whatever reason it really aggravates my hands and arms where the IV is and they ache horribly the whole time. Today is a little better.
I had a follow-up scan this morning, and will have another tomorrow morning. During that visit tomorrow the doctor will meet with me to discuss the results of all of these scans. I’m really looking forward to getting some definitive information about the effectiveness of this therapy.
For now I’m just hanging out at the hotel, trying to get some rest. I talked with two of the other PRRT patients this morning at the clinic. We’re all staying at the same hotel. It’s great to see and hear how others are doing, and to feed off each other’s enthusiasm about this process. I’ll post more tomorrow after meeting with the doctor.
The “One for Brian” Golf Tournament was an overwhelming success, raising over $30,000 toward the cost of my treatments!! Kathy and I really can’t believe it, and are so grateful to everyone involved. To date we have raised an incredible $76,874.63 which puts us beyond our original fundraising goal. It’s so wonderful and yet so hard to believe that we’ve come that far in just a few months. Not having to worry about paying for this therapy is such a blessing. Again, a huge and heartfelt Thank You!
Because we’ve reached that milestone, the Pasta Dinner Fundraiser that was planned for October 8th has been postponed indefinitely. We may revisit that next year if there’s a further need. Thank you so much to everyone who already did so much planning and legwork to get that dinner organized.
I return to Houston on October 11 for my second round of PRRT on October 12. An MRI on the 11th should give us some clues as to how successful the first round of therapy was. I will continue to keep everyone updated here as my journey unfolds.
Well we’ve been in Gilroy for about a week now and it’s great to be back home. We really missed everyone and especially missed our comfy home. The trip back was uncomfortable for me but that was to be expected. It was great to be able to crawl into my own bed. Unfortunately Kathy had to stay in the guest room until Wednesday as an added precaution.
I still have abdominal discomfort and queasiness that comes and goes, but that’s getting a little better every day. My energy level is also improving. I went to work for a few hours Wednesday – Friday last week. My post-therapy symptoms are considered normal and I didn’t have any complications. I was able to get my regular monthly injection of Sandostatin LAR on Wednesday so that helps me feel a little better.
I go back to Houston for round two in October, the 11th through 15th. It will just be a 5 day trip, with an MRI on Tuesday afternoon before the Wednesday therapy, then flying back home on Saturday. Hopefully that MRI will show some tumor reduction.
Fundraising is still moving forward at an incredible pace, with just over $46,000 donated to date. Thank you very much to everyone who has contributed. The first big benefit event is this Friday afternoon, a golf tournament at Gilroy Golf Course. The tournament is already sold out, but there are still seats available at the 6:00pm dinner for $25 each. If you’re interested in joining us please contact Mark Derry at firstname.lastname@example.org. I’m really looking forward to a great day spent with many friends and family members. Also please mark your calendars for another fantastic benefit event scheduled on October 8 at 6:00pm – a dinner and auction at the Portuguese Hall. Please contact Mayor Al Pinheiro for tickets and more information at email@example.com
Thanks to all of you who are following along here, posting your supportive comments, sending good wishes via text, e-mail and phone, and for giving us the strength and support to keep on fighting the good fight. Take care.
We said goodbye to Mary, Russ and their sons today. We had such a great time with them that the week went by too quickly. Incredibly gracious hosts – thank you!
The meeting this afternoon with Dr. Delpassand went well. He first took my history, then discussed PRRT in general terms and explained why he felt it was a good option for someone like me because of the potential for positive results with relatively few side effects.
He then went over my various test results in detail. Everything was basically as we expected with regard to my tumors and their locations (liver, diaphragm, lymph nodes, lung, etc.) No real surprises there. He then discussed the PET scan and said mine was negative. This is a good thing because it means my tumors are not taking in a lot of glucose and are therefore not aggressive. This is both good in general terms and also because it makes me a better candidate for positive results with the PRRT. Then Kathy asked him about the bone scan. He said that was negative as well, which means that they didn’t find any bone mets: more good news. All things considered Dr. Delpassand said I’m a good candidate for this therapy so we’re very hopeful that it will be effective.
The greatest potential for harm from this therapy is to your kidneys. To counteract that they give you amino acids to help protect your kidneys. Taking the amino acids reduces the possibility of kidney damage to just 1%. When I show up Wednesday morning they will start a 4-hour IV with those amino acids. About 30 minutes into the amino acid drip they start the actual lutetium (radioactive) drip, which will only go for about 30 minutes total. I’ll sit for 3 more hours while the amino acids keep going. They’ll do some scans during and after all of this to make sure the lutetium is being taken up by my tumors as they expect. It’s actually the amino acids that can make you nauseous, but that should pass after the first day.
This picture is of some of the Excel Diagnostics staff as we were giving them a garlic braid. Cathie, Bouchra and Susan are all great and have been very helpful. As soon as the photo-op was over they started cutting up the braid right away and were handing out garlic to everyone in the office.
Tomorrow we’re probably going to visit Johnson Space Center, and maybe head down to the coast before the big day on Wednesday. I’ll post more then. Take care.
We’ve been enjoying ourselves just hanging out in the pool. It’s a great way to beat the heat.
The picture below is at Minute Maid Park during batting practice. The exposure isn’t great, but that’s Kathy standing next to Russ and Mary with their son Steven in the middle. It’s a great ballpark, but it was a bit of a letdown to see the Giants get hammered for the second day in a row by the worst team in baseball. They actually gave out free “Los Astros” t-shirts last night, and I’m wearing mine right now because it’s cheaper than therapy. If the Giants get swept today the shame will be unbearable.
Tonight will be our last night staying with our friends in Spring. Tomorrow we’ll head to the hotel in Houston following the afternoon doctor’s appointment. I’ll post more after that.
We visited Dr. Wolin today after an MRI, CT and blood-work yesterday. He reported that the scans showed stable disease, with no growth in the tumors in my liver or elsewhere. The largest of my many liver tumors is about 4.5 cm across. Dr. Wolin is still convinced that PRRT is the best thing for me, and wants to see me again in L.A. after my first two treatments, probably late October.