Seven years ago when I was first diagnosed with carcinoid by an endocrinologist I was scared and didn’t know what to expect. The ensuing weeks of scans, biopsies, lab work and visits with an oncologist left me even more frightened, and saw my expectations run the gamut from “maybe this thing can be surgically removed and I’ll be cured” to “this thing is incurable and I’ll be lucky to survive five years.”
This past week Kathy and I spent two days in LA at Cedars-Sinai where I had follow-up imaging and lab work. It’s been about six months since my last round of PRRT in Houston. I was expecting results that just showed my disease is stable with no new growth. Instead Dr. Wolin and the radiologist were ecstatic to discover from the MRI that all of my tumors were still shrinking. That’s right: six months later and the PRRT is still shrinking all of the tumors in my liver, lung, diaphragm and lymph nodes. This is the best news we could have hoped for!
Now I expect to still be around for awhile, and keep up the fight against carcinoid!
Kathy and I just returned home from a quick 2-day trip to Southern California. I had some scans and tests at Cedars-Sinai yesterday and today, then we met with my oncologist, Dr. Wolin, late this morning. The purpose of the trip was to follow-up after completion of PRRT in Houston. The great news is that Dr. Wolin said he was very pleased with the results! The imaging showed that many of the tumors in my liver and lymph nodes have shrunk. Other tumors have remained stable, and there are no signs of new tumor development. These are very good results and prove that the PRRT was effective.
I’m so happy that this journey we first decided to undertake last May has paid dividends. It feels great to be at a stable place with my health for the time being. I’m slowing regaining my strength and energy and feel much better than I did just a few weeks ago. I return to Houston in early May for a quick follow-up visit, then back to see Dr. Wolin again in late May. The hope is that continued monitoring will indicate things are status quo for some time to come. I’ll keep having my monthly injections to help with symptom control, though a little more good news is that the dosage will be reduced so I only need one giant, uncomfortable injection monthly instead of two.
Thanks for checking in and following along. I’ll post more as there’s news to report. Take care.
Well I’m glad it’s Friday and that I had my fourth and final nuclear scan this morning, so there’s nothing more for me to do before flying back home tomorrow. I really miss my family. After this morning’s scan I drove to another office and met with the doctor to review my results.
The news is essentially this: stable disease. That’s good news because it means that there are no new tumors and nothing is growing or spreading. Not to get too technical, but the MRI report states, “Stable to slightly decreased size of bilobar hepatic lesions.” Again good news which means that my largest tumors in my liver have actually decreased in size ever so slightly. The largest of those tumors measured 4.7 x 4.3 cm before my first therapy in August, and it’s down to 4.5 x 4.2 cm as measured Tuesday, just prior to my second therapy. That’s only a modest gain but progress nonetheless. I’m very pleased that the therapy is working and really looking forward to more dramatic results after the second, third and fourth rounds.
In general I’m feeling somewhat better this time than I felt after the first round. I’m still pretty tired though. Plenty of time to rest this afternoon, then looking forward to heading home tomorrow.
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.
Well enough about the weather already because apparently my ranting isn’t going to drop the mercury one bit.
Here’s a picture of the wonderful home we’re staying at in Spring TX with some old friends, Mary and Russ and their two sons. It’s really great to have a comfortable environment and some excellent home cooking during this adventure.
Today involved two scans in the same apparatus with a similar nuclear injection. They were octreoscans, where the isotopes bind to my tumors so they can get a good idea of how effectively the real therapy next week will also bind to my tumors. Tomorrow and Friday will each entail an additional octreoscan to track that effectiveness over time.
I also had an MRI today. I don’t care what anybody tells you or where you have it done, but when you’re 6’2” with broad shoulders squeezing into a little tube with your arms bent over your head while a loud machine screams at you for a prolonged period of time is never fun. It’s all part of the process however and I know that the images are invaluable in displaying very clear pictures of my tumors.
The good news is that I’m back on my octreotide injections this evening and am already feeling a little better. I’ll be on them until Sunday night when I’ll have to go off again to prepare for next Wednesday’s therapy.
The other PRRT patient that we met was on a second scanner in the same room with me today. She and I spoke briefly this afternoon, and of course we’re both very hopeful for great results from this therapy. She has also been off her injections for a couple days so we were commiserating. This is all a little easier with a shared experience.
Tomorrow will be another octreoscan and a PET scan (which I’ve never had before). I’ll post more after that. Take care y’all.
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.