Typical Carcinoid Tumor in Lungs

Hello @gapsc

When you last posted you were rather uncertain as to what to do about your treatment. I just wanted to drop in and say hello. I hope both you and your wife are doing well.

Will you drop me a note and provide an update?

@gapsc, I, too, would be perplexed in your situation. It can take a lot of energy to continue to asks questions as a patient, but I encourage you to continue to ask why. Perhaps they haven't explained the risks vs. benefits clearly enough. What is your understanding of the potential risks?

Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size reduction in tumor to possibly make resection possible. Although early indications were positive and I was able to tolerate the drug. the Oncologist decided out of the blue that it was not worth the effort or potential risks (news to me). Afinitor was stopped. A suggestion from Dr. Wolin of Mt Sinai in NY was to take Afinitor with the Lanreotide. the two drugs seem to work better. Again Afinitor was stopped. This has thrown me for a loop and the decision to stop that drug almost seems arbitrary. I really do not know what to do. So you asked a great question Coleen. I have sought alternative treatmentas since my initial diagnosis and it seems that unless I get the World Health Organization to back me up the suggestions are ignored. You might think that it is time to go elswhere...only to travel a great distance?.I am in Charlotte NC. I simply cannot afford to hop across the country to get a monthly shot. We are in our 80s and I care for my wife on a daily basis. Novartis the maker of Afinitor has been very kind to me and made Afinitor available. But I guess that may be the story of alternative treatments. You will get your shot and take your chances. there are no guarantees. Live well......be happy......thanks for reading GAP

Hi @gapsc, welcome back. Great to get an update from you. You'll notice I moved your update to the discussion group called "Typical Carcinoid Tumor in Lungs" where you participated before. I'm sure @hopeful33250 @mgreene and @ghassan will appreciate hearing from you again.

What led to the decision to stop Afinitor?

Hello Group...Just remembered I was a member here. And yes still chugging along with 2 whoppers. right lung and media sternum. Not much change though. Currently on Lanreotide injection every month and just stopped Afinitor. Lots of difficulty by radiologists to measure tumors accurately. Is it bigger...smaller or the same. The last CT very confusing to me but definite enough to stop Afinitor. Dr. Was looking for shrinkage. the wonderful word stable keeps popping up or even worse if the Radiologist looks sideways it looks the same. My nets are non-productive so it is also difficult to understand what symptom is actually attributable to the net. Crazee. right now I am going through an itch phase....itching all over and deep like a skin crawl. I have other afflictions but the NET gets everybody's attention. Everyone is learning.Thanks for reading GAP

Hello @ghassan

It has been awhile since you last posted and I was wondering how you are feeling. Have you made any decision yet regarding treatment (or not) for your lung carcinoid? Have you received any other medical opinions?

I hope you will post a follow up as you feel comfortable doing so, @ghassan.

Welcome to Connect:
I was diagnosed with Non Small Cell Adnocarcinoma 11 year ago with a CT scan at Mayo Clinic. I cannot tell you how shocked I and everyone who knew me was. I never smoked. Within 2 days i was in VATS surgery, all of my upper left lung and a wedge in my lower left lung was removed. I the past 11 years the research world of lung cancer has gown tremendously. I understand how emotional a diagnosis may be. I also believe there are now targeted therapies
for just about everyone.

The key to "Quality of Life" is proper diagnosis and proper treatment. I commend you for asking questions. I feel that I am alive today because I was
fortunate to be diagnosed and treated with an amazing team of doctors...who have continued to follow me. It may be very helpful to get a second opinion
regarding your diagnosis and treatment.

With one lung I have run a 5K race in every state and a 10 K in 4 of 7 continents. This fallI ran my first 10 mile race. I share this only because, I have
learned the importance of paced breathing, keeping active and not sitting on the sofa watching TV. We bicycle 18 miles a day in the summer and
Cross Country ski 6.5 miles every day, or run a 10K.

I love the sounds of your spirit, I have a feeling you are not one to give up. With lung cancer...Never give up! I know people who are stage 4 and have been kept living with a great quality of life because of targeted treatments.

Think about where you may want to go for your second opinion...and go if you can. In the meantime think about reading a book titled HAPPINESS by
Dr Amit Sood...the author. This book clearly helped me accept lung cancer and carry on moving forward.

Let's stay connected. And Never give up!

You deserve a cyber hug,

Best,

Hello @ghassan

I am glad that you did not allow yourself to be rushed into an earlier surgery.
The most important thing is to consult with a Carcinoid specialist. From my understanding there are many in Europe. Here is a link to a website that will give you names and locations of carcinoid specialists throughout the world, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/ In looking through the list there seem to be several in Sweden. Please keep in touch.

I look forward to hearing from you again.

Teresa

I was diagnosed with a .4c rectal carcinoid in 2000 and a recurrence in 2010. Four doctors — internist, gastro, invologist and research oncologist — told me in 2000 that a csrvinoud is only cancer-like, not really cancer. And that I had nothing more to worry about. My instincts told me they were incorrect, and of course they all four were wrong. It took awhile but I found one of three carcinoid specialists in the US, and traveled to him for a consultation. All that is to say find a specialist in lung carcinoids, even if it means traveling and extra expense. I wish you the best.

Thanks Teresa for the prompt answer , I saw the oncologist on the 18th of June to discuss the operation options I was shocked when they told that I am scheduled to be operated on , the 21st of June , which I rejected , I asked about the " Wait and Watch " option , are there any statistics to back up such option ? He gave me only one option which is lobectomy , my carcinoid is in the middle lobe of the right lung in the middle of the lobe on the bronchi , as I look at US cancer society site it shows so many other options , your help is really appreciated .