Rower Michelle

Aw, Opal! Thank you both!

Well my friend, as I read your post for some reason it conjures up an image of Wonder Woman using those magic bracelets to deflect the “evil C”. There isn’t a light at the end of the tunnel- it’s a BONFIRE! Your perseverance is inspirational to all the future Durva Club members. Almost to the finish line, as we say in rowing, good racing! Michelle

Eyes on the prize Barb! You got this!

DFK- A big KC Whoo hoo for nearing the finish line of Duva as NED. Outstanding!

Hi Kate- Gosh, I’m so sorry to hear about the unrelenting Durva side effects. To piggy back on the others perhaps there is a clinical trial available? That’s where the GO2FOUNDATION can help find a match or Bridget’s recommendation for a second opinion might come in. It’s worth pushing this issue over the just wait & see. Keep us posted! Hang in there. Michelle

Hey Roseann That is very good news indeed! Funny I named my tumor Bill- after the Kill Bill movies. Death to the monster! You are doing this! Whoo hoo! Michelle

Hi Bob, Well if there’s anyone who can handle this new treatment plan, it’s you. All the best heading into round three. We’re all going to be there for you. Carry on. Michelle

Our prayers are with you next week as you head into surgery. You know in all those years in healthcare I saw a lot of posts on LinkedIn (most of them pointless) however one of them seems to stand out: the road to success is never a straight line. It’s fraught with unexpected twists, turns, ups, downs and just plain curve balls that can throw anyone off course. The difference to achieving the goal is perseverance in the face of uncertainty & adversity. That sounds pretty much what we’re all doing here every day. Unlike our working lives, lung cancer doesn’t get to go on vacation, so we have to keep going forward. I hope you have a speedy recovery. Michelle

Death to the beast! Onward. Side effects suck. So sorry about that, keep fighting!

Thanks @Curt Ok, we're under a winter storm watch here in KC (REALLY??). Don't like to go outside when it's under forty! Snow tomorrow. YUCK. Anyway, I tracked downed the research summary from one of Saturday's presenters, Dr Zhang, from the University of Iowa (not the Dr. Wall of Shame Dude). Here is the outcome on the AE and IO published in October, 2019. https://www.cancertherapyadvisor.com/home/news/conference-coverage/iaslc-north-america/iaslc-north-america-2019/gut-microbiome-lung-cancer-risk-immunotherapy-treatment/ Here is the link about this from MD Anderson that was also discussed: https://www.cancertodaymag.org/Pages/cancer-talk/October-11-The-Week-in-Cancer-News.aspx I was taking one of those OTC pre and probiotics and the first thing my Integrative Medicine Doctor at the University of Iowa did was tell me to discontinue, even though I take take targeted therapy. I tried the DIY keifer it was just too gross for me so I buy mine to make chia pudding. Here's the recipe: 1 Cup Keifer 1/4 cup chia seeds 1 tsp of cinnamon 1 tsp of maple syrup You can add things like a table spoon of oats, barley, rye or blueberries Place in a jar, shake it up and viola two to three hours later you've got "pudding". Chow!

Barb I was thinking about you during this presentation- I guess that most boardwalk foods are not microbiome friendly. 😂

Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event. I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks. “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience. He wasn’t a positive see the bright side of life type of Doctor. Shame on him!! Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s). It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome. Too much of “good thing” is bad for you. those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva. In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. You guys inspire me! Michelle

Hi Ron- Yep, all of those side effects! The only thing I can say is that it’s a worthwhile trade off For some reason Alectinib is dosed at the highest “tolerable” in a one size fits all category. Approximately 3/4 of patients get stepped down to a lower dose which decreases most adverse effects. Hang in there through the “fine tuning process” with all those upcoming labs! Michelle

That’s such wonderful news Tomm!

Hi Barb- The Durva Road isn’t an easy one for sure. The treatment break will hopefully help relief some of the pain which can be debilitating physically and emotionally. You’ve got serious mo-jo so carry on- Jersey strong. Michelle

Barb- Glad to seen the Jersey spirit alive and well. Skip the opiates onward with roids . Get some rest- no working through this one... hang tight.

So sorry Barb- not a fun place to be hanging out in. Unexpected scans are unnerving. Keep us posted.

Hi Ron You are most welcome! I’m sorry that you were not tested right from the beginning, however it’s unlikely to have changed the treatment plan as Alectiinib is rarely used in Stage III. I was able to obtain Foundation One biomarker testing at no cost after the insurance company issued several denials. There is a way for patients to be their own advocate and not go bankrupt. I’m not sure if you’re using commercial employer insurance, if so then Genentech has a $5 co-pay program. Their website isn’t easy to use, but you can sign up for email alerts. The goodie bag will come in the mail a few weeks after the first prescription. Please do not rely on Dr Google, the ALK research is moving fast so anything more than six months old is already out of date. A better place is the GO2 Foundation, Lung Cancer Living Room on YouTube. There aren’t too many ALKs so you’ve got to patiently wait and listen to the whole program. As for the side effects, there is a document on the ALKPositive.org highlighting all of them with potential solutions. Almost everybody gets stepped down in the first two months due to elevated liver enzymes. Not to worry, this drug is so new that the dosing is one size fits all at the maximum allowable. Not to worry if a dosing adjustment is needed. I don’t do any any social media- please let me know if there are any valuable nuggets. I had to meet a number of our “brother & sisters this summer”, they’re awesome. So happy continued trails to our Durva cousins! Michelle

Hi Ron! I’m sorry I missed your post. You’re biomarker testing is actually wonderful news! I am ALK Positive too. There are five FDA approved inhibitors available to us with a very high quality of life. Kleo was spot on when she said oncologists get excited about targeting mutations. I’ve been on Alectiinib for almost a year with excellent results. I wonder if your doc wants to try the Alectiinib first and save the radiation therapy for a later time. The Alectiinib knocked out my Mets after a few weeks. The side effects are very manageable, most of us have had some issues with fatigue, weight gain & elevated liver enzymes. There are additional resources for ALK Positive patients- a vibrant closed FaceBook Community, ALKies Unlimited (FB) and ALK Fusion (FB) Website: www.alkpositive.org and YouTube Channel with video feeds from the ALK Positive Summit in Atlanta last August. The next ALK Summit has a save the date for July 31-August 2nd (location TBD). The leading ALK researchers are here in the US- Alice Shaw MD at Mass General, and Ross Camidge MD University of Denver. During the Summit Dr Shaw stated there was no better time to be hopeful with lung cancer than today, the research is accelerating survival rates significantly. In addition to the inhibitors, research for a vaccine and cellular therapy is underway. Welcome to mutant land where life is good! Michelle

Hi Ken, life happens so when it rains, it pours. I will pray for a good outcome on those scans. We all know how nerve wracking the whole process is. I wanted to jot off a quick note of caution regarding the reverse mortgage. My father is a former banker and says they are to be avoided like the plague due to predatory lending practices. Unfortunately, my in-laws have fallen victim to such practices. Several years ago, unbeknownst to us, the parents took out a lump sum reverse mortgage (instead of monthly generated income). Due to the accrued monthly interest payments, the house is under water with zero equity. There are no funds available for future catastrophic repairs and soon they will be facing eviction (in their 90s). I hope you have a good attorney on hand to navigate the potential pit falls. Looking forward to your next post! Michelle

I know how you feel Barb! Just called my onc today after a six pound weight gain in less than two weeks. Here comes the lasix again. It’s a grey day here in KC someone flipped the fall switch fast here. If the Wellbutrin doesn’t kick in within six weeks, ask for a psychiatric evaluation, there are newer more effective agents available. Hang in there.

Good to hear from you Kleo! Maybe you’ll finally get an immuno goodie back on the double combo?? You’re an inspiration girl! Keep on rockin’!!!

Hi Rosann & DFK I have the ALK driver mutation and maybe I can she some light from mutant land pertaining biomarkers, TKI & Immunotherapy The “standard biomarker panel” consists of EGFR, ALK, ROS1 & a PDL-1 percentage. There’s quite a controversy as to when the standard panel is done if the cancer is Stage III or above where the goal of treatment is with curative intent Payment for biomarker testing is Sometimes driven by the health insurance medical necessity guidelines to only pay at Stage IV. In an ideal world everyone with adenocarcinoma should be tested for a driver mutation but it’s expensive (close to $6k). The “standard panel” is considered insufficient for treatment planning purposes since there are many other driver mutations. The gold standard is called (get ready) comprehensive biomarker, a full panel, molecular testing, next generation sequencing, or oncogene testing (whew). All means the same thing. While there are a few companies in the US who perform this analysis, most physicians use Foundation One in Boston. Another reason for comprehensive testing is greater sensitivity, there are two ALK tests. The standard panel can turn up indeterminate. It’s important to know which ALK test was completed. TKI are inhibitors in pill form used to put the brakes on a mutation. Durva and Keytruda are classified as a immunotherapy which is a “targeted “therapy for those with a high PDL-1 percentage. In other words there are two types of targeted therapies: TKIs and Immunotherapy. TKIs and Immunotherapy in some cases do not mix (pneumonitis). This is true for the ALK inhibitors. “Mutants” don’t respond to Immunotherapy even if there is a high PDL-1 (no one knows why). I don’t think this is anything you have to worry about now. All this stuff is very complicated, research is emerging so quickly anything more than six months old is already out of date. Dr Google is not our friend. A great resource is the Lung Cancer Living Room on YouTube by the GO2 Foundation. Last week the key presentation was on Immunotherapy. Even though it’s two hours you might find it to be worth your time. Hope this helps to clarify some. Keep up the fight! Michelle

Thoughts & prayers are with you Ron. Waiting sucks, hopefully the next treatment plan will kill the little bugger.

Very sorry to hear about your update Ron. The best news here is that you have several options available to you for the next line of treatment. Your medical team is being aggressive in stamping out the stubborn little monster. Keep up the fight...