From the start.
June 13, 2014 (the mis-diagnosis story):
Frank had a brochoscopy this morning which came about because of a cough he has had since last November (2013). He saw a physician this in March who ordered a chest x-ray which showed a partially collapsed lung and then did a follow up in April after he tried an albuterol inhaler, deep breathing, and continued with some cold medication. There was no change from his baseline x-ray so he was referred to see a pulmonologist, Dr. Spencer. Dr. Spencer ordered a CT scan, an asthma test, and another breathing test. The asthma test and other breathing test came back negative. Frank has great oxygenation and his labs look good but the CT scan confirmed that his left lower lung is collapsed. Dr. Spencer then ordered the brochoscopy to look further in the collapsed lung.
The results from the brochoscopy show that Frank has a left lung carcinoid tumor which may be located in the left main branch and not just the left lower lobe. A biopsy could not be performed due to the tumors vascular nature. We are told that the carcinoid is a neuroendocrine tumor that can be simple or more complex. I am praying that it is a typical lung carcinoid which can be surgically removed, has a low likelihood of metastasis and no other treatment will be be necessary. We have been referred to Dr. Langdon who is a thoracic surgeon who we will meet on the 25th of this month. After this appointment hopefully many of our questions will be answered but as a result of my conversation with Dr. Spencer this morning this tumor will need to be removed and depending on the location the left lower lobe or the entire left lung will have to be removed. I suppose we will have to wait until the tumor is removed to know the staging and if any other treatment will be needed.
Frank is doing great, he has been napping and enjoying his lack of responsibilities (doctors orders) while I have just been trying to wrap my mind around all of this while scrapbooking. I was hoping it was asthma but God is shaking up our lives a little! Our ten years of marriage has been without any big challenges so we are more then ready to overcome this! Your prayers would be greatly appreciated! Please forward this on to the rest of the family and I apologize for not personally calling all of you but feel that this is less exhausting and will get to all of you in a timely fashion!
Love you all!!!
P.S. Frank claims that coughing for 6 months has given him the best abs ever and he is extremely disappointed that he will not be able to run marathons or participate in triathlons anymore (like he ever did anyway…)!!
Katijo & Frank
June 26, 2014 (the correct diagnosis story following 2nd opinion at Mayo Clinic):
We’ll start with the Ugly. . . Today we met at Mayo with Dr. Peikert the Pulmonologist who finally gave us some answers. Here we go. . . The official diagnosis is Stage 4 lung adenocarcinoma, which is a non-small cell lung cancer that has metastasized to the left 6th rib and 7th vertebrae. The diagnosis is the result of the second brochoscopy that Frank had on Monday when the biopsy was obtained. We had to painfully wait until today for the results and they are not what we were hoping for!
So now what? Mayo pathology is continuing to test the biopsy that was taken on Monday to determine if the tumor has one of about six specific mutations that will respond to medications that aggressively attack the tumor. We are praying for this because drug therapies are very effective and allow us to avoid a traditional chemo-type of treatment! We will know those hopefully by next week and a treatment plan will be developed. Right now we know that the cancer needs to be stopped systemically through either drug therapy or chemotherapy before anything can be surgically done.
Tomorrow Frank is scheduled for a rigid brochoscopy that will gather more of the tumor and open up his airway. The tumor will be sent to Boston for further mutation testing and removal of the tumor will hopefully help Frank’s coughing subside. He is also scheduled for an MRI of the brain to determine if there is any metastasis there which will add to the treatment planning.
So the good… We are very confident with the team of doctors that Susie helped us find at Mayo and feel that they are going to offer us the best treatment plan. Frank and I have spent many quality hours together and are facing this new challenge together with growing respect and love for each other. I have also successfully gotten caught up on all three boy’s scrapbooks, finished a book, and may be looking for more car appropriate projects.
The best positive out of all of this is the love, support, and prayers that all of you have given us! We are so blessed to have all of you in our lives! You all have been asking what you can do to help and I am going to be asking for your help once all of treatments get underway. Trust me I will not be afraid to ask! Please keep praying for us!!!
Katijo and Frank
June 27, 2014:
Frank had his third bronchoscopy this morning to debulk the tumor…which basically means they cleared out and removed a big chunk to open up the airway as a temporary measure. Frank already feels like his breathing is better and his cough has a change in quality.
Frank also had his MRI of the brain and the results show no metastasis to the brain – thank God!
July 10, 2014:
It’s been two weeks of waiting and we finally have a treatment plan but before we get to that let me get you all caught up…
On Monday Frank received a phone call from Dr. Peikert, the pulmonologist and it was good new in the world of lung cancer, Frank is unique and special! Yes we all know this but now his tumor is also unique. The results for the biopsy show the tumor to have ALK+ mutation! This is good news because there is a pill called Crizotinib (Xalkori) that aggressively targets the cancer cells and is not as toxic as traditional iv chemotherapy…meaning no hair loss, suppressed appetite or immune system. Hopefully it will be life as normal!
Over the course of the last few days the physicians wanted to make certain that the spots on the vertebrae and rib were metastasis and not something else. This gave us some hope for up grading the cancer staging. So Frank had an MRI of the spine and a rib biopsy and they confirmed that it was metastasis, so no such luck. These results really don’t change Frank’s treatment plan.
The plan for Frank is to begin taking the Crizotinib (Xalkori) once it’s approved by insurance and shipped to us since there are only a handful of pharmacies in the US carry it. Then he will have periodic follow ups with the oncologist, Dr. Pham. After a couple months Frank will have a repeat PET scan to gauge the effectiveness of the pill. Once determined effective and depending on the amount of tumor shrinkage surgery may be discussed to remove the lung mass and most likely the entire lung.
We are told that this is not the typical treatment approach for stage IV non-small cell lung cancer with the ALK+ mutation, but given Franks age and otherwise good health they will be taking a aggressive approach. With this plan and confidence in the doctors we both are feeling positive and hopeful of a miraculous cure!
Thank you for your prayers and please continue to pray for Frank!
September 19, 2014:
On Thursday afternoon Frank and I took the now all too familiar drive to Rochester, MN for his repeat PET Scan and oncology appointment on Friday. All week I was feeling anxious even though Frank kept telling me he felt so good and knew the medication was melting away his tumors. I felt 90% sure this was true and was trying to stay upbeat and as positive as possible, but that 10% of doubt kept creeping in to my mind, making me easily irritated and anxious. On the drive up I felt like I was going to explode, the result of the scan couldn’t come soon enough for me, while “surprise”, Frank was as calm as could be. I cherish our drive time together and absorb the one-on-one time we have to talk to each other without our three normal little interruptions. This is the best time for me to learn what Frank is really thinking and feeling. He is absolutely amazing me with his trust in God, calmness, and comfort in what ever happens.
Friday morning started out with Frank’s PET Scan. Normally a straightforward procedure, Frank spiced things up by fainting in the chair while they were flushing his IV with saline. Passing out was a first for him but they got his feet elevated and he recovered quickly. After sorting that out, the scan itself was a non-event. After the scan we grabbed some lunch then headed back to meet with Dr. Pham, the oncologist at 1:00. I was getting really anxious to hear the result of the scan! As soon as Dr. Pham entered the room he was smiling and quickly informed us that the scan looked good – really good. Wow! Instant relief!!!! I knew I was going to cry no matter what the results of the scan were but I was so elated that I could shed some tears of relief, joy, and thanks! Dr. Pham was very impressed with the tumors response after only two months on Xalkori. In fact if you remember, we pushed for a scan after 2 months when his initial recommendation was to scan at 3 months. He was really shocked at the magnitude of the response. The tumors on the sixth rib and seventh vertebrae are completely resolved as well as the lesions in his left main-stem bronchi and left lower lobe brachial. The large tumor in the left lower collapsed lung that was measured at 4.4cm has decreased to 1.7 cm and the lobe has re-inflated. Dr. Pham described the results as “80% of the way there” and added that we’re only about 25% of the way through a normal 9-month treatment cycle. Frank will be re-scanned in December and we hope the tumors will all be completely resolved.
Frank will remain on Xalkori until the 9 month mark before we would discuss surgery. If the response remains as miraculous as we’ve seen so far, surgery may not be required (i.e., the surgeon may look at the scans and not know exactly what to cut out assuming the lung is functioning properly and the tumors have dissolved). However, the range of patient response to Xalkori remains everything from 100% effective where patients will continue the meds for years (the longest we are aware of is 6 years now), to somewhat ineffective where it loses its potency after 9-12 months and a second line therapy is required (Ceritinib most likely).
We are obviously relieved and excited about our latest news! Although it feels like a lifetime ago that Frank was diagnosed and taking his first pill it has only been 3 months since his diagnosis and 2 months on Xalkori. The lessons we have learned in these three long months are an awakening on how to live our lives. There is going to be no more waiting and delaying to go and see the world, visit our friends and family, and simply just cherish each other. Frank and I can not express how thankful we are to be loved by all of you!
Katijo and Frank
December 31, 2014:
<Insert more great news here>