Medical Update || More MRIs and Stopping Chemo

“And one has to understand that braveness is not the absence of fear but rather the strength to keep on going forward despite the fear.” – Paulo Coelho

Based on MRI results in August, we spoke with our new radiation oncologist, Dr. Mackenzie McGee with OSF, as well as the opinion of Dr. James L. McGee, and have increased the frequency of these scans and now have them at the gamma knife center in Peoria. There is a spot that could be brain mets but it hasn’t changed recently. It will be more closely monitored if they find enhancement, gamma knife radiology would be the next step.

In other news: With a decent amount of trepidation, we changed Dan’s maintenance therapy. He stopped chemotherapy (an infusion of Alimta [pemetrexed] every three weeks) and started Alcensa [alectinib], an oral medication. 

He had success with Alimta for 30 months straight. It is no cakewalk, so somebody get this guy a trophy. I’m pretty sure he set a record anyway.

Despite the success, together with Dr. Kumar, we chose to have Dan begin taking Alcensa because his chronic infections were getting increasingly tough to manage and affecting his quality of life. Last year, Dan endured six months of recurring cellulitis with two hospitalizations for drip antibiotics. He has had five months of the infection so far this year with multiple outpatient drips and constant, increasingly stronger, oral antibiotics. My fear of an antibiotic-resistant super-infection began to really stress me out and Dan was tired of it all on top of chemo side effects every three weeks.

While there are patients who only have the option to stay on Alimta, Dan has a few more. So we are more than astoundingly grateful.

[Disclaimer: I’m going to go into these options and if that is boring, you can just skip ahead.]

He is one of the 5% of patients with adenocarcinoma NSCLC who have the ALK gene, and there are several targeted medicines for it, referred to as “ALK inhibitors.” The medicine turns the gene “off” to temporarily stabilize the cancer. The first of these, Xalkori [crizotinib], was developed by Pfizer and approved by the FDA in 2011. I say “temporarily” stop the cancer because the cancer inevitably resists the medicine. Because of this, Novartis developed Zykadia [ceritinib] as a second line treatment, offered in 2014 after only a mere three years from clinical trial to approval. (This year, Zykadia was also approved for first line treatment.) Along with Zykadia, Alcensa [alectinib] was developed by Chugai (Japan) and then also fast-tracked in the US for approval in 2015. That is the one we are going with first.

I want to emphasize; Three life-prolonging medicines were developed and approved for Dan’s specific cancer within four years. That is crazy.

 Alcensa – structurally – there it is for any of you science nerds.

Anyway, once the financial aid was approved, we took the leap and Dan took his first dose Friday, October 6th. So now we wait to see how/if it works and what side effects he will experience. Three weeks in, it is the usual suspects–fatigue and constipation–but no nausea. Edema continues, which increases the chance of cellulitis, but so far so good. His is still on his daily antibiotic. He will have blood draws every few weeks to keep an eye on the usual numbers as well as new liver and muscle enzymes to watch.

And that’s the latest! More soon about what we’ve been up to and how Raine and I are doing. Thank you for taking the time to read this and for keeping us in your thoughts.

Happy Friday! Great News!

The results are back and I bet you can guess by our celebratory selfie in the oncologist’s office that they are good!

The MRI of his brain showed NO infection, NO clots, NO new tumors, and all lesions are confirmed necrotic–Dead. “Tumor necrosis” is the fancy medical term for that, and I feel like I want to carry a balloon around today with that written on it! What makes me even happier about this news is that there is also NO inflammation due to the necrosis. High five!

The CT scan showed NO growth and NO new tumors. Double high five! Oh man. So relieved.

Repeat MRI won’t be for 3 months (sweet!) and repeat CT will be routine in two weeks as we now move onto maintenance chemotherapy with pemetrexed (and still the trial drug ruxolitinib). The timeline for this maintenance phase is TBD as we don’t know when Dan’s cancer will progress again. We hope to see at least 5-8 months, which is the average for NSCLC. The greater hope would be 12-24 months! Let’s break the record book, Dan!  Regardless of the time, because of his ALK mutation, when this phase ends, we have two more targeted therapies we can pursue for him that are pill form, already FDA approved, and very promising. (And THEN, two more in the pipeline!)

So today is a good day for our little family living with lung cancer.

Thank you everyone for your thoughts, prayers, super rad vibes, and generosity. We love you all back!

Medical Update || The Left Lung + Platinum Chemotherapy

Let me do my very best attempt to bring you up-to-date with Dan’s health. Warning: Long post...

After the last CT scan, we did in fact proceed with two more platinum chemotherapy infusions (pemetrexed, ruxolitinib, and cisplatin) -rounds 5 & 6. After round 5, he was bed ridden for a week. His taste buds and other fast growing cells continued to struggle at the assault and he lost his tolerance for more food–cheese, garlic & onions, potatoes, for example. I tried not to worry as I woke him periodically for his meds, water or juice, and small bits of food. It was difficult to get him to eat much at all. One night I woke him and he could only manage 4 baby carrots. He lost ten pounds that week. I bought whey protein and added it to smoothies. I tried to get adventurous and add it to any snacks I could–fruit yogurt or spaghetti-but even the unflavored powder bothered him with a distinct taste that only he noticed.

His strength and endurance slipped away as he slept each day. A typically warm blooded guy, he now felt cold constantly and wore blankets and hats day and night. He grew so pale. Raine and I brought colds into the home but luckily Dan only caught very mild versions. However he has had trouble hearing in his left ear from the congestion and it hasn’t gone away. We were finally able to get him in for a blood transfusion the day after his 6th infusion (2/21/15). His level dropped to 6.9 and they typically offer transfusions at 7. It was disconcerting to watch him drop that low but I was so relieved to see color return to his face after he was administered two bags of blood. The combination of the additional blood volume and gratification knowing it was his final treatment with cisplatin seemed to give him some extra pep going into his recovery after the 6th round.

The dizzy spells he was having stopped after round 5 and we are encouraged that this could mean that they were more likely related to the blood volume/anemia issue with over-exertion and not his brain lesions. Of course, we always have to scan the brain to check things out and be sure, so an MRI was done February 1st and he is repeating it again today. The findings last month included:

Signs of possible bacterial infection, signs of possible new cancer OR blood clots/bacterial infection, stable tumors with improvement in his left frontal lobe where he had swelling (inflammation) due to the tumor dying/shrinking previously, and signs of softened/destroyed brain tissue.

We will know more about the status of each of these issues this Friday when we discuss the results of today’s MRI. At this point, the medical team has agreed that there are no signs of anything unusual given his condition/treatment, so we are just hoping everything has remained stable and that they can explain to us any necessary implications to consider with regards to his brain that hasn’t been fully discussed so far.

As a side note, Dan’s hair is growing back in and is very fuzzy and light (we have yet to figure out if it is gray or blonde) with some thicker dark patches growing more quickly. 

As for Dan’s lung. We had an appointment with a thoracic surgeon in February and were disappointed to find out that he can’t have the surgery to seal his lung to the chest wall and prevent further fluid accumulation. The best analogy I have heard to describe Dan’s lung is that his chest is like a glass bottle, with a balloon inside, and the balloon has a little bit of duct tape spread across the balloon, conforming it to a tight shell. The balloon/lung is awfully small and constricted. Of his 100% lung capacity, the surgeon estimated that Dan is operating with 60% due to that reduced left lung (probably operating at 10% itself).

As far as his lung capacity in day to day life, Dan typically feels well, but certain tasks make him short-of-breath or he would not be able to complete them at all. For example, he would not be able to walk 18 holes of golf or carry Raine up a flight of stairs. The surgeon asked Dan if he thought he could manage 9 holes of golf, to which Dan replied “Sure,” so the surgeon gently commented that he should be glad for that. It surprised him that Dan could even walk from the parking garage to the medical office without getting winded. This surgeon (who is all too familiar with lung cancer) examined all of Dan’s x-rays and imaging and felt that Dan’s stamina and performance was “remarkable” –indicative of his young age and great health.  (So let that be a lesson of good exercise and nutrition.)

It was a little difficult to adjust my mind to the status of Dan’s limitations as not being limitations that we would have removed (so that he can get back to normal) but permanent.  This is my healthy, strong 37 year old husband. I felt like the reality of his illness hit me all over again like a merciless crashing wave. Oh, right, this is cancer and it has damaged him and it will never go away. This is so unfair.

I cried during that appointment; I felt completely unable to let the tears stop.

Now, 4 weeks later, I am focusing on what he is able to do, and how much better that will be when he is further healed from the platinum chemo. We are almost 3 weeks post-infusion and he has been able to go back to work for short days, help play with Raine and put him to bed, and continue to do some chores around the house–all in VERY small doses. (Trust me, I am like a hawk!) He remains slightly anemic but his appetite is good and some of his taste buds are changing back, so he succesfully had pizza and pierogi last week!

We will know more about the status of the cancer on Friday when we discuss his CT scan results. Our hope is that everything has remained stable and he can start maintenance chemotherapy (pemetrexed–standard for advanced NSCLC and research shows good for ALK) on Friday to keep the cancer from growing again/spreading further as long as we can. Dr. Duffy estimates another three weeks and he will start to feel much more like himself again, because the low dose of pemetrexed that will be administered moving forward should have minimal side effects. (Thank goodness!)

I will write a post on Friday to let you know what we find out!

P.S. THANK YOU to everyone who has been volunteering, sending care packages and cards, donating money, and encouraging us. I wish I was able to thank each and every one of you in person! Please know that we value every donation and act of service. You can continue to use our Wish List, GoFundMe, and Lotsa Helping Hands. These have been miracles for us–in addition to the early Spring here in Oregon.

Change the Future of Lung Cancer

Ross Camidge, MD, PhD, University of Colorado Cancer Center from TEAM DRAFT on Vimeo.

Now that we are into a few rounds of Dan’s treatments and know his genetic information, it is time for a 2nd opinion.

Dr. Duffy has recommended Dr. Camidge, a world leading expert on Lung Cancer. I love this guy’s passion!

Dan's Cancer

So here is what I have learned so far. And this is all mostly in my own words so you know, it is probably 98% actually correct. Sometimes talking to doctors feels like I am playing telephone when I was a kid. Did I get the right message that we started with? And I honestly don’t know if learning more about the science of his disease helps me or hurts me. Which means it is both. I am simultaneously empowered by gaining knowledge and terrified by understanding the quiet, deadly nature of cancer cells. So if you want to learn more, keep reading. If you would rather not know, stop.

Dan’s cancer is 100% definitively lung cancer. We know this because a very smart and diligent person in a lab put the cells that were found in his chest fluid underneath a microscope and stained them to identify their biomarker. Different cancer cells have their own biomarkers and I think of it kind of like a thumbprint. The markers tell doctors where cells are from. The cancer started in his left lung, approximately up to 9 months ago. (There is currently no cancer that has been detected in his right lung.) Trust me, it is very weird to think back to January and realize this whole time, cancer has been growing and spreading in his body.

Not everyone who has lung cancer has the same type. There are two types, and Dan’s is Non-Small Cell Lung Cancer (NSCLC). Within the NSCLC type, there are 3 different types of tumors. Dan’s tumor is Adenocarcinoma (the most common in the United States for both men and women. It occurs mainly in current or former smokers, but it is also the most common type seen in non-smokers. It is more likely to occur in younger people than other types.)

There are stages of this type of tumor, determined by how much it has spread. Our oncologist, Dr. Duffy, used the analogy of a large city expanding with suburbs and using up all the resources it can. When the city and its suburbs are too large and there are no more resources, the people move elsewhere and start new cities. That is basically how I understand Dan’s tumor. A little city in his left lung that used up its local resources and then spread scouts out to his lymph nodes, bone, and brain, and built towns there. The tumors in those areas of his body are still the Adenocarcinoma, not new cancer. So Dan doesn’t have bone cancer or brain cancer, he has lung cancer that has spread  (which they refer to as “Metastasis.”) We know of these locations because of a PET scan done at the hospital. They used glucose in his bloodstream to activate cancerous cells* and those spots show as a brighter light on the scan. It was important for Dan to see his scan and talk about it with his hospitalist, Dr. Goldstein, so that he could actually see what was inside him. I didn’t want to see it (ugh!) but he made a good point that after his treatments, we would want something to compare his new scan to. He is lit up like a Christmas tree right now and we are hoping for more dark space next time!

*Glucose fuels all cells of the body, including cancer cells, and cancer cells use the glucose faster than regular cells because they are fast-growing cells. The sugar does not make cancer cells. Please do not send me literature on a sugar-free diet. We are aware of research studies about sugar and tumor growth and our doctor is as well. Dan isn’t gulping down gallons of soda each day but at this point, he is also not depriving himself of some of his comfort food, in moderation. Please respect his choices and know that we are having a constant dialogue with our doctor about every possible thing. We live in Oregon after all, so our doctor has heard a lot. Portlandia could easily do a comedy sketch about a patient’s visit to the oncologist’s office with many, many questions. 

The tumors in his lung caused the blood clots that caused his chest to fill with fluid and eventually created his shortness of breath. Otherwise there were no symptoms. His tumor was able to grow and thrive in his lung and as the tumor dispersed its waste, the lymph nodes in his chest collected it and the tumor repopulated inside those. There were no symptoms for this as well. After the tumor spread by blood cells to his bone in his spine and his brain, still no symptoms occurred. Our oncologist explained that often the only indication for lung cancer can be sudden weight loss or maybe a cough mistaken for a cold. We thought the last month Dan had caught a cold I had and was also having bad summer allergies. As of March, Dan was actively getting into the best shape of his life. He was inspired by a good friend who was having a hard time keeping up with his toddler and got fit. Dan set his goal and achieved it. He went from 280 to 230 and introduced daily portion control, stretching, and cardio and/or yoga exercise. It is ironic that he never looked or felt better. We will never tease out what part of that 50 pound weight loss involved his cancer.

Lung cancer happens pretty fast and has little warning, right? It is extremely common to be diagnosed at an advanced stage because there are no symptoms until the cancer has grown or moved to another area and created symptoms. Curable cancer seems to be defined by finding it at a stage where it can be removed and then preventing further spread. It is next to impossible to do this with lung cancer. Even if all of Dan’s tumors were miraculously removed at all of the locations it has been found, there is still more disease below our levels of detection, and it will always repopulate. It will never be stopped permanently. The most common age group for persons diagnosed with Adenocarcinoma is 70’s or 80’s, at which point the body is commonly already weakened and diseased by other conditions. It is difficult to put them through aggressive treatment. Often the body is not strong enough, or the side effects reduce the quality of life that is left.  

But Dr. Duffy will be damned if someone wants to put Dan in that category. He is 37, quite fit, in perfect health (otherwise) and at this point, his other vital organs are not affected. Yea! She and Dan have discussed his treatment strategy and they are going all out–balls to the wall–so to speak. (Pardon my French.) She encourages him not to read anything on the Internet or literature based on statistics because he is the exception to the rule. The first time we met her, she walked in the room and looked at him and said, “I shouldn’t be talking to you.”

A crucial part of determining his best treatment is identifying the genetic markers of his Adenocarcinoma. There have been advancements in the understanding of lung cancer and its genetic mutations. These mutations act differently and/or are driven by different proteins and therefore respond to different treatments accordingly. This means all lung cancer patients don’t receive one batch of the same chemo. There are highly specialized versions and Dan will get those, in addition to any research/trial versions related to his type of tumor. All of this remains to be seen and we eagerly await results (hopefully in a week) and our next meeting with her October 15th to start our strategy. In the meantime, his 10 treatments of radiation to his brain have likely reduced the size of the 5 tumors in his brain and will prevent complications. We are SO fortunate that they had not grown or overpopulated such a vital and sensitive area of his body. While his treatments have ended, the radiation will still do its work. He has had no side effects but could still feel tired or have headaches or nausea in the coming weeks.

So that is everything in a nutshell that I know right now. I needed to write it down. Putting thoughts into words on paper or a laptop screen help me. I also re-organized some cupboards and obsessed over our outfits for our family pictures tomorrow. You do what you have to do.

Thank you to the lovely families and persons who have mailed and delivered cards, care packages, gifts, and meals. You don’t know it, and I feel like I will never be able to adequately articulate my gratitude, but every time I receive help, it makes a big difference, no matter how small the gesture. I want to thank you all with a thousand kisses and tears of joy.

xoxo,
Leah Ruth