As most of you know, lung cancer is EXTREMELY underfunded when comparing lives lost. It kills more than the next 4 cancers combined.
The Department of Defense funds specific research called Congressionally Directed Medical Research Programs (CDMRP). One of them is the Lung Cancer Research Program (LCRP).
A brief history: Since LC was added in 2009 it only received its alloted $20 million for one year. It then went down to $15m, $12m, then only $10 million a year for the next four years.
This affects the programs ability to fund innovative research proposals. They had to reject 70% of proposals rated “excellent” by consumer peer reviewers. This is costing lives.
Thousands of advocates including organizations, patients, and caregivers, came together to slowly increase that number. Usually by $2 million a year and eventually getting back to $20 million in 2021.
This was huge! Lung cancer research has come so far in the last 10 years. Imagine what we can do with this additional research money for the deadliest cancer.
In 2022, we made a bold ask of $60 million for the Lung Cancer Research Program. We held over 200 meetings with Members of Congress in May at the GO2 Foundation for Lung Cancer’s Voices Summit and had several other meetings over the summer. Other cancer advocacy organizations joined us in urging Congress to prioritize cancer research, early detection, preventive services, palliative care and telehealth services in the year-end legislative package to accelerate progress against the disease.
They just approved $25 million for 2023!! This is because we fought hard, we shed tears, we told our stories, and they listened.
I’m so excited to see what discoveries this brings and how many lives will be saved because of it.
“You have lung cancer, and it has spread to your spine.”
I’ll never forget hearing those words. I went to the ER for relentless back pain that I’d had for 4 months. I thought maybe I had a herniated or bulging disc, but lung cancer never entered my mind. I was healthy, always tried to take care of my body, and I was only 40.
I have been blessed to meet amazing people because of my cancer. Some of which have become close friends. I have worked on advisory panels, speaker’s bureaus, and traveled to dozens of conferences to educate myself so I could help others. This has been my way to feel useful and contribute to society. Not being able to work anymore was really hard for me mentally, so I needed to find my new purpose. I think I was born to advocate for others.
Looking at my memories for this date makes me smile. I had a party to celebrate year 5, I went to Niagra Falls, lobbied in DC, and celebrated with family. It is not lost on me how I lucky I am that today marks 11 years since my diagnosis.
There was not a lot of hope for survival in 2011. Most died within a year. There are so many new treatments now which give me incredible hope. I have a rare biomarker driving my cancer to grow so there are fewer options but in the last 11 years three new drugs have been developed and another one is in trials. Some are more effective for ROS1 than others depending on your tumor’s genetics, but there ARE options.
I would love to raise $1100 this week for ROS1 specific research.
The ROS1ders, Inc was created by survivors to help further develop a greater understanding about ROS1 positive cancers and more treatment options. They’ve worked with researchers to help create NINE ROS1 cell lines through tissue and pleural fluid donations, which has more than doubled the number of ROS1 cell lines available for research. These cell lines are shared freely (for the cost of shipping) with academic researchers to accelerate research. Any donation amount will be greatly appreciated.
I learned today that my previous oncologist died Tuesday. Dr. Nicholas Vogelzang was my dr for 9+ years before moving to Florida. His specialty was GU cancers and he was in research at U of Chicago for many years. I’m grateful he moved to Vegas and I was randomly assigned to him. About a year into treatment I started having progression and my oncologist wanted to start me on another chemo. I had learned about biomarker testing from other survivors on Inspire (an online patient forum). We did a biopsy but it came back inconclusive. I was then told my cancer center would be closing and I would need to find another Dr. I didn’t know it at the time, but that was a blessing.
So I called Comprehensive Cancer Centers of Nevada to set up an appointment and was just assigned to Dr. V. He was kind and empathetic but also had a plan. He said “you’re young and healthy, you must have a treatable biomarker.”
He made a call on his cell phone with me in the room and said “Hey Randy, it’s Nick. I have a young woman here with lung cancer and we really need to get a biopsy. What do you think about doing surgery so we can test her tumor?” Well Randy was a thoracic surgeon and he was on vacation but he would have his office call me to schedule an appointment to meet him.
I ended up having the right lower lobe of my lung removed and 4 weeks later Dr. V called me at 10pm to share the news: my tumor was positive for the ROS1 biomarker. This allowed me to start a targeted therapy that I’m still on today 9 years later. I will forever be grateful.
He always asked about my advocacy and wanted to know what I was doing. He had the ROS1ders comic book in the front of my chart. We made a video together for Pfizer about ROS1 and attended a Coaches vs Cancer event together where I shared my story. He was a special man.
I’ve been reading all the posts on Twitter from his colleagues about the impact he made on them. Some saying he was the reason they went into kidney or prostate cancer. All saying what a difference he made in their lives. He was the co-founder of the Kidney Cancer Association and the reason many trials were brought to Las Vegas.
Las Vegas does not have many specialty oncologists and there is not a thoracic oncologist. I was lucky he was my dr. He was humble and knew he did not know everything about ROS1 cancer but knew I had access to those who did. When I had progression almost 5 years ago, he told me “get with your people and let me know what we’re going to do.”
It was hard to say goodbye to him when I moved to Florida. I had no idea of course that he would be stepping back just months later due to his own health issues. I learned in July that he was on hospice and he had lymphoma. A disease he overcame as a teenager and what drove him to be an oncologist. I wrote him a long letter and was able to have it delivered to him. I was sent a picture of him reading it. I’m happy I was able to express my immense gratitude to him before he died.
I know his body is free from disease now and he’s not suffering. But for today, I’m sad.
Well after 2 1/2 years of evading it, COVID invaded my body, and I shared it with a few others. There have been times that I have been in crowded and potentially risky places but the week leading up to getting it only consisted of 2 outtings: Walmart (a quick in and out and used self-checkout) and my oncology office for chemo. I still wear masks indoors unless eating and am very diligent about hand washing. I assume most of us will get it at some point and this variant is highly contagious.
It started with a hoarse voice (no sore throat), then a cough, sinus congestion, a SEVERE headache, followed by fever, fatigue, and body aches. A home test came back positive the 2nd day I had symptoms. It was like the worst cold and flu combined. For 3 1/2 days I only got out of bed to let the dogs out and get more water. My boys were great company. Joe’s symptoms started the day after mine. He also had a fever, aches, fatigue, and SEVERE headache. The headache was the worst part and coughing made it horrendous. Joe brought me food and water in between his own naps.
My dr called in paxlovid and I started taking it on day two. That stuff leaves a horrible metallic taste in your mouth for the whole five-day course. By day five, I felt much better and only had fatigue and a lingering cough. I was able to edge both yards yesterday but was very wore out after – it only took 20 minutes.
At day nine, Joe and I were still testing positive and I had to cancel my trip to Denver for a survivor conference and to see my son. I haven’t seen my son in 18 months, so this is beyond disappointing. My biggest fear is having any long-term effects from COVID. I have a few friends that still have fatigue several months later and some have had heart and cognitive issues. I already have brain fog from chemo and other drugs, I definitely don’t need it compounded by this virus too.
Be careful out there friends. While I’m cautious, I personally feel like I still need to live my life and do things I enjoy. Life is short. What’s the point if you can’t do things you enjoy?
It sounds crazy, right? 60 infusions of toxic drugs pumped through my veins every 3-4 weeks. The standard protocol is every 3 weeks but after about 18 months we changed to every 4 weeks to give me more time to feel better and enjoy life. It seems to be working well.
I was on aTKI (tyrosine kinase inhibitor) that kept my ROS1 driven lung cancer stable for almost 5 years before having slight progression. As I’ve shared before, a new biopsy didn’t give a clear direction for the next treatment so we added chemo to the daily TKI once the progression increased, and I’ve been doing that for 4 years now. AND I’m still stable!
After chemo today we decided we needed some time in the water and on the beach. My true happy place. Enjoy every day friends. Life is short.
I’m long overdue for an update. As you can see by my Facebook posts I’m diving right into life in Florida and really loving it. I’m in love with our house, our neighborhood, the parks, and of course the beach. Just can’t wait for Joe to be home in June to explore with him. Can I just say how grateful I am to have such a hardworking husband that makes so many sacrifices to provide for our family and make me happy. He’s a true blessing and I miss him fiercely.
I just had chemo #58 yesterday. Yes, I’m as astonished as you are! May 6th will be 4 years ago that we added chemo (pemetrexed/alimta) my targeted therapy drug (crizotinib/xalkori). I was hoping that would buy me time through the end of 2018 when another drug would be approved. And here we are going strong and still stable. Thank God and science. I also took my friend Carla for sushi. It was her first time and she ate it but I don’t think she’ll be rushing back. I enjoyed it!
On May 16th it will be 9 years ago that I started xalkori. That amazing pink pill kept me stable with no evidence of disease for almost 5 years before having slight progression. We watched those new little suckers for 9 months before they started to grow and recruit more little bastards. After a new biopsy didn’t give a clear answer for the resistance, and consulting with 3 experts, we decided to add the chemo. It has turned out to be a great choice for me.
In addition to Mother’s Day in the US being on May 8th, my birthday is May 10th. I’m happily turning 51 this year. Every time I complete another trip around the sun is a true blessing and times I did not think I’d see when I was diagnosed in 2011. We’ve come a long way baby!
Living with stage 4 lung cancer isn’t easy. My body can’t do the things my mind thinks it can. That frustrates me. What’s worse is when my brain just says “nope, not today. I’m done. You’ve used me too much. I’m tired. Just stop.” That’s really frustrating but I’m adapting. It’s definitely a work in progress. Us type A personalities with a few control issues don’t do well in that situation. I have learned just let it go MOST of the time, but you know…… have you met me? LOL
I was not crazy about my new onc and after having an intense discussion I decided it was time to move on. I met my new, new onc a few weeks ago and I really like him. He’s younger and from Puerto Rico. He’s very straight forward, no BS, and very open to collaborating with Dr. Camidge when the time comes to find a new treatment option. And a lady from my support group last night told me she’s been seeing him for years and he works well with her nephrologist. So that’s great news.
I have scans at the end of the month so I will keep you posted. Thanks again for all the support and love. You guys make this journey easier, and I wouldn’t want to do this without you.
This may be long……. As you all know, I’m a planner. I tried to coordinate everything so I could hit the ground running as soon as we arrived to Florida. We pulled into our new driveway on Nov 6th and I met my new primary care physician (PCP) on the 10th. I met NP Denise and she was wonderful. She went over my history and I told I was there for referrals to oncology (preferably Moffitt) and to pain management. I was hoping to expedite it as much as possible to avoid any delays in chemo which was due Nov 15th. I realize this was a long shot and figured chemo would likely be delayed a week or so. Not a big deal.
I was informed that I’d get a faster approval from insurance to go to Florida Cancer Specialists, then move to Moffitt when necessary. I told them I was concerned that no one was familiar with ROS1 at FCS and would prefer Moffitt where I’d have better treatment options moving forward. She left to talk to Jennifer in referrals, they called FCS and said Dr. Chamberlain has treated ROS1 patients. So I agreed to meet him. After scanning all 2000 pages of my medical records (10 years worth) those amazing women got insurance approval AND an oncology appointment the next morning! That is no small feat.
I was happy Dr. Chamberlain had already reviewed my records and we just summarized them together. He said he has treated 3 other ROS1ders, yes they have many lung cancer trials there, and he trained at Moffitt. His personality is a little different (kind of cocky, kind of goofy at the same time) but seems straight forward which I like. When I asked him about future treatments options when chemo stopped working he said “there are quite a few.” He pulled them up on his computer and there was one, entrectininb. I told him “there are not many and that drug won’t work for me if I become crizotinib resistant.” After he was done talking I gave him a few highlights about my advocacy and told him I was a very informed patient. He said if at any time I wanted another opinion I could get one at Moffitt and he fully supported that. So for now I’m sticking with FCS.
There was a little haggling to be done with insurance getting a pre-med approved then chemo was scheduled for Wednesday Nov 17th. They have you do labs, see the Dr, then get chemo. They were running late so my normal 50 minute infusion became a 2 1/2 hour visit. Hoping that will get shorter and I won’t have to see the Dr every time once I get established. But yay! chemo was only delayed 2 days.
We also found out my iron is really low making me anemic. I’ve never had this issue before but infusions are required. The normal range for iron is 37-145 and mine is 16 so it’s likely I will need 2 or 3 to get me into normal range. We aren’t sure why it’s low so we’ll go from there I guess. Hoping it gives me more energy once I have the proper amount of hemoglobin. That was a 3 1/2 hour infusion on Friday which required a little Benadryl after my nose and throat got a itchy. Typically the infusions are 3-8 days apart but I’m not sure when my next one is yet.
I also have scans scheduled for this Wednesday. It almost feels like when I was first diagnosed and had several doctor appointments a week. By Wednesday, I’ll have had 4 in a week. I’m used to seeing my onc every 3 months at scan time. Hoping this will change also as I get established here but at least it’s only 5 minutes from our house. Overall, I’m really impressed at the speed and efficiency that has made all this happen this week.
We’re getting settled into the new house. We’re having an addition built in the backyard for Joe’s Niner room/man cave so his stuff is temporarily in other parts of the house. The room is being built as I type, then electrical, drywall & paint, and finishing touches and a patio. It should be done the first week of December so our house can be functional for Christmas.
Everything is moving along. I can’t wait to start playing in the yard and planting stuff! I have so many ideas. Thanks for following our journey and for all the encouragement and love.
We only had a 3 hour, 189 mile drive. I was so happy to cross Tampa Bay. We drove a total of 2356 miles over 41 hours.
We walked around the house, Joe seeing it for the first time in person. Thanks honey for trusting me AGAIN and buying our house without seeing it first.
Joe kept telling me I was crazy for cleaning our old house so good before we left. No one wants others people’s dirt. I was optimistic that our new house would be just as clean. It seemed very clean when I first saw it. Overall, it was but I needed to clean both bathrooms and the frig.
We unloaded my car and the RV. I think all my plants survived. My big tree may lose a limb since it got bent. We got everything put away for now and our truck comes Monday.
The boys wandered around the house, sniffing every corner multiple times. They weren’t happy when we left to eat dinner and get a few groceries. Jake scratches at the door.
We actually ate INSIDE at a Mexican restaurant near our house. I ate there once with my parents in May. The food and service were both really good.
Overall the drive was smooth today. We drove 563 miles, 10 hours, through Mississippi, Alabama, and made it into Florida.
I refused to spend a single dollar in Alabama which wasn’t hard since we only drove through it for about 90 minutes. I know they’ll never know, or care, that we didn’t spend our $120 in gas there, but it makes me feel like I did my tiny part.
The traffic and weather was good all day until the last hour. It rained and was foggy and I hate driving in the dark in unfamiliar places. I pretty much prayed the whole last hour.
Our room is MUCH better tonight. We’re having pizza from Little Caesar’s and having a drink. Or two.
It was a pretty uneventful drive – which was great. We drove another 560 miles, 9 hours and stopped in Jackson, MS. Jake slept almost the whole day but was awake most of the night. Not good for his parents.
Our hotel was pretty awful. Many gross things but we were too tired to leave. I knew there was a Cracker Barrel nearby so we were excited about dinner. Called in my order and was told it would be 30 minutes. I arrived to pick it up and my order wasn’t ready. They were very busy with lots of to-go orders so I waited another 30 minutes and checked again. She asked if I called the right location, I showed her the phone number I called and told her the amount was $36. She said “Oh, I have an order for Luther for $36.” Sooo…. my food has been sitting here for 30 minutes getting cold and my ice cream is melted. Can you please have them remake it?
After 10 minutes of no communication I asked for the manager. I did not want to be that person but now I’m getting hangry – 9 hour drive, Shitty hotel, I just want my food. I explained to her that I know they’re very busy but could they please re-make my order. In 10 minutes we had hot food and it was delicious! And she only charged me half price.
On the drive there’s alot of conversations going on in my car – with myself, with Jake, with God.
I’m just so incredibly grateful we get to make this trip. When I was diagnosed with stage 4 lung cancer in September 2011 I was worried it would be my last Christmas and my mom and Joe would be raising my kids. Thanks to research I’m here 10 years later and moving to the beach – my happy place.
One more long day of driving, then a short one on Saturday. Keep praying for travel mercies there may be rain ahead.
Faith, Family & Friends 