There is much to catch everyone up on. First let me begin by telling you I finally had the two day Octreotide Scan. Going through this scan this time really showed me exactly how much my cancer has progressed. When I was first diagnosed it truly was no problem to lay in that tube for hours two days in a row. I actually used that time as almost a mediation period. I am not saying that I enjoyed it but I did it with no issues. Well three weeks ago the repeat of that scan was not as pleasant. The masses in my bones have just taken over. I think it was about eight minutes into the test that I was praying for it to end. By day two I was so worked up about not being able to finish the entire scan that Mark and the tech actually sat with me and cheered me through the whole thing. By the end I was crying and praying uncontrollable. When they finally pulled me out of the tube you would of thought I conquered Mt. Everest. I was hugging everyone and saying over and over again, "I finished it.....I did it". I felt so weak and like a complete baby. But I did it and at that point could care less what anyone was thinking. The scan was on a Tuesday and Wednesday and by Thursday afternoon I called a message from Dr. Freidland that my results were back. Mark wanted me to call him back insistently in fact he was upset I missed the call. However, knowing how the last few months have been for me I really was not ready to hear the news. So I waited the weekend and called him back on Monday.
Dr. Freidland and I went over the results and immediately I made an appointment to see him face to face. The Octreotide showed much progression in the tumors that I already have and several new tumors in my hips, back, legs and liver. I kept the news to Mark and myself until I met with doc and had a game plan. I love all those who care about me but it can be very frustrating for me to give bad news and not have any answers on a solution to those I am giving the news to. The first question that I am asked is, "what are you going to do about it?" and fighting cancer does not always have answers like that.
After my appointment with the doc we started taking steps to a new plan of action. I went for some CT scans to take a closer look at the liver and see exactly what the size of the tumors where. The CT scan also shows what is going on inside the liver and the tumors. With those results we can tell the seriousness of the progression. Dr. Freidland stressed that its time to get a move on some PRRT treatments. He did care if it was in Europe or Houston TX but just get something started before its to late. We are schedule tentatively to go to Houston on November 1st. I say tentatively loosely because their are several factors that come to play. Fist the finances, the LU-177 that has shown best results is extremely expensive. We are saving it's just get it all together. Secondly, I am looking into places in Switzerland, Germany and Holland to see if they are more affordable. So I am reaching out to my NET posses all over the world to please email me any information you may have. Mark and I both agree that money will not stop me from my fight but we need to make smart decisions before we spend this amount of money.
As many of you know the founder of Apple, Steve Jobs, passed away this week. The media has been reporting that he passed from a rare form of pancreatic cancer. That rare form of cancer is neuroendrocine, carcinoid or NETS.....whatever way you want to call it. It frustrates me that the media does not report on this further. Today there are several medical talk shows that could expand on this cancer and get the word out that it is the number one misdiagnosed cancer. In some cases it is a slow growing cancer but by the time its been diagnosed it may have been growing for years. Many times its to late once they detect it. I have atypical which means its more aggressive then other forms of NETS. Although, I've been told that its been three years since then. So who knows? My point is as simple as can be: SPREAD THE WORD about carciniod.
On a positive note The Fourth Annual, "Take a Swing Against Carcinoid Cancer Wiffleball Tournament" is only two weeks away. We need you to help us spread the word and grace us with your presences. PLEASE register ASAP. All ages and all types can play. We even had 80 year old Grandma take a swing last year. There is no running, its truly like you neighborhood backyard game of wiffleball. This event is such an amazing day. Great fun and wonderful prizes. We are even auctioning off a FL vacation. If you are not interested in participated come for the day to spend it with your family. Food, beverages and games for a $10 donations. Several groups were upset that they have a football game or a church event. This is event is all day. Come and go as you please. Get you hand stamped and leave. Come back when you are done with your schedule. Don't miss the joy and love that this day brings. Not to mention there is a big surprise this year. BIG SURPRISE!!!! It is truly a wonderful day. Days like these are the reason I fight with all I have. I love seeing all you guys there to support me. Please come.
Sunny
After over a decade of suffering from Carcinoid Cancer, Sunny Jennings Carney has decided to fight back. She has currently undergone two proven treatments in Basel, Switzerland and is planning to return for two more. She is also planning on going to Houston, Texas for a six month period to undergo experimental treatments that look promising but are not FDA approved. She has exhausted all the FDA approved treatments here in the United States and will not accept that this is all there is for her. She has dedicated her fight to help others understand this rare cancer and to find successful treatments in the United States. Her strong faith in God and will to never quit has turned a 6 month life expectancy to over two years presently.
Below is an entry that was written by Sunny's husband Mark when she had her third bout. To become updated on her journey please enjoy her posts.
Please check back for updates and event information.
Below is an entry that was written by Sunny's husband Mark when she had her third bout. To become updated on her journey please enjoy her posts.
Please check back for updates and event information.
| Sunny Carney Carcinoid Cancer Fund
C/o S & T Bank 2190 Hulton Road Verona, PA 15147 |
Sunny's husband Mark tells their story...
A mother of three boys, a daughter, the baby sister to a large family, an aunt, a godmother to several, a trusted friend, an outreach volunteer, a business owner and my wife. Sunny Carney lives up to her name every time someone speaks to her; she is beautiful both in and out. She has been my biggest motivator, my rock and my inspiration in tough times, my biggest fan in good times, and most importantly my best friend. Told 14 years ago that having children may not be part of our future because of ovarian cancer, she kept the faith, and is a wonderful mother to our three sons- Austen, Logan, and Nolan. She is always ensuring that they know the Lord, love of life, kindness to others, hard work, and occasionally when to "shape up".
Her boundless energy, healthy lifestyle and positive attitude are infectious. She has served as president of our children’s PTA, organized committees that benefit those who are less fortunate in the community and led drives for those who have been caught up in unfortunate situations. She has done so much for others, usually without letting anyone ever know, I could not begin to list them. Her strong faith in God and modest upbringing has given her a sense of giving that only she can explain. When she successfully started her own photography business, she also started a non-profit division photographing family portraits for area families fighting cancer. Her friends say she is amazing and she simply shakes her head and wonders what all of the fuss is about.
Her mother, sisters, brothers and large extended family will tell you she is the one you can count on to lend an ear when needed and never judge. She was raised by her loving mother and father who was the warden of the Allegheny County Jail and actually spent most of her childhood in the residence connected to the jail. At a young age she witnessed more of life’s tragedies and obstacles through her neighbors, the prisoners, than most of us can imagine.
Although all of the aforementioned is remarkable it is not what makes her truly special. Sunny is a two time cancer survivor and now is currently fighting for a third time. After beating ovarian carcinoid cancer and undergoing serious surgery for carcinoid tumors in her right lung just three years ago, the carcinoid tumors returned in her lymph nodes, liver and bones. The size and proliferation throughout the liver of these tumors mandates immediate chemotherapy in four treatments over the next few months as well as monthly octreotide treatments. These painful treatments will hopefully stop the growth but are not a cure. There are numerous tumors in her spine, her skull, her hip, her leg, and her shoulder...all in the bones and she will wait on potential radiation to fight those.
What my wife has is Carcinoid Cancer Syndrome, an endocrine disease which is rare and spreads from organ to organ. As of right now the only known treatment for remission is administered by renowned clinics in
Mark A. Carney
C/o S & T Bank
