First, I need to apologize for not posting my fourth post regarding the PRRT treatments that I have been getting. I’m so sorry the post has not been written yet and posted BUT….I do plan on writing it as well as a summary of my experiences and some additional posts. Life and cancer has been keeping me on my toes lately and so the final post has been delayed a bit. While we are on the subject of delayed posts, I also do plan on finishing the posts on B17 that I have been writing. The book I have been reviewing chapter by chapter is very informative but a little dry…and so I stopped reading it. Honesty….rare, isn’t it. 😀 So, onward and upward…here is A Quick Update About My PRRT Treatment Carcinoid Cancer…
Update: Also, here are links to all of the other PRRT post I have written. Post #1 is an intro to PRRT , Post #2 is about my first trip , Post #3 is about trip 2 , Post #4 is about trip 3. There are a few more but they are just little updates while I was writing these main posts. There is one more big post that I am working on but…you know how it is….been sick, fighting insurance companies, fighting airlines…and so on. I will be posting about my last trip which is number 4 and I will post on hotels and restaurants and I will do a “wrap up” post. At least…that’s my big plan. Thanks for being so patient. 🙂
I have been grouchy lately. 🙂 I had plans to go to Excel Diagnostics in Texas to get my follow up scans but I found out AFTER I BOOKED MY FLIGHT that my gallium 68 scan was not covered by my insurance. In fact, they didn’t cover the first gallium 68 scan either. So, there was no point in flying all the way to Texas to get scans that I can get here in North Carolina. Why did that make me grouchy. Well, Excel has a communication problem. They communicate very well to my doctor BUT not so good with me. If I had known that my first gallium 68 scan was not covered then I would not have booked these plane tickets. This scan was done almost half a year ago. 🙁 I lost a minimum of $600 for a re-booking fee to my airline AND no refund for the tickets. My only option is to USE the credit for ALL THREE of us or lose the money. Now, honestly….we don’t have the money to take a vacation and we don’t have the time either. So, we may lose more money. That really makes me grouchy. OK, I said my piece. Oh, wait…I just need to get this in – ha ha ha!!! I hate insurance companies…we are fighting with 2 of them right now. Grrr….grouchy….but that’s another post, right??!! 😛
Now, I’m sure most of you can relate to why I am grouchy but, in the same way music calms the savage beast, caring calms the beast within me. 😀 The one thing that I can say about the people at Excel Diagnostics is THEY CARE!!! In fact, Lisa and I were pretty amazed at how much they care. Now, of course every person is unique and I cannot speak on behalf of every employee that works there BUT…overall….what an amazing bunch of people.
From the receptionist to the the ladies in the back to the technicians to the doctors….they are quite an amazing group. Trust me, I know caring when I see it…I’ve had to deal with the opposite too many times. I’ll bet you Net and carcinoid cancer patients know what I’m talking about. 🙂 Any how, you can hold a grudge when people care. How much do they care? I complained about the lack of communication. Guess what they did? They made excuses….just kidding. No! They apologized and explained that they were short handed and were doing their best. Then…they apologized again. Then explained themselves again. Then apologized again and apologized for their colleagues. Um, OK! I’m not angry any longer!!!! 🙂 How can you stay grouchy when they care AND apologize and they didn’t give me some sort of lecture….just honesty and an apology. Thank you for caring so much guys. I have lost more money and been misdiagnosed by doctors and staff that couldn’t care if I lived or died. I was a number…or an insurance payment….or both. Excel stands out…they are Excel-lent. 😀
A Quick Update About My PRRT Treatment For Carcinoid Cancer
27% tumor shrinkage! Yes! 27%!!! That’s almost 30%!! Basically, a third of my cancer is gone!!! AND…I have read that it keeps shrinking after that! Fingers crossed, right?! 🙂 Here is the email I received just a day or two ago.
After reviewing your records here are the final result of your treatments.You have received a total of 4 cycles of LU-177 Octreotate PRRT with a Cumulative dose of 801.966 mCi of LU-177 PRRT.
The radiologist choose to follow 5 target lesions using an IV contrast enhanced CT of the abdomen and Pelvis. Prior to starting therapy the total diameter of those 5 lesions was 35.3 cm After receiving the 4 cycles of LU-177 PRRT that I outlined above, the Total diameter of those 5 target lesions is 25.7 cm, which is a 27.2% Decrease in size of the target lesions. This is considered STABLE DISEASE.
Happiness and Joy!
So, how about that! Fighting is worth it. I found out about PRRT on my own. I was given a chemo regimen that was ineffective in treating carcinoid cancer. I researched the chemo regimen and then I refused it and found another doctor. I was told I needed emergency surgery. I found out that he was probably wrong and so I sought a second opinion. I was told that he was wrong and so I refused the surgery and found another doctor. I was told I was going to die in 7 then 5 and then 2 years! I have already beaten the 2 years by 1 year and have only 2 more years to go and I will have reached the 5 year survival mark. Only 2 more years after that and I will have reached the 7 year mark that they originally gave me. David will be 12 by then. 4 more years and he’ll be driving a car. Yes, I’m making plans. Can you say “cure”? 😀 In each of these cases I found a doctor who was more educated than the last. Eventually, I found PRRT. I researched it and pursued it. I found doctors to help me make my decision (Duke Radiology) and I went for it.
It pays to fight, to keep a positive attitude when you can and try to hang in there for a cure. Don’t believe everything they tell you. Sometimes they’re just reading from a paper or reporting what the “data” says. Sometimes, they don’t care enough to look at you as a person. I know a lot of things are out of our control as cancer patients but take back control where you CAN control things. Educate yourself, try to stay positive, enlist others in your “struggle”…I know you can do this. 🙂