Rower Michelle

Hi Marie- I am an ALK mutant taking an inhibitor drug very similar to Tagrisso. We all learn to live with the uncertainty of what to do when our magic pills stop working which can be YEARS from today. So for now I live life everyday, laugh and try to do at least one fun thing each day. While I’m no longer working, my life as a continuous learner continues. I’m into tai chi ( but not very good at it yet so who cares? ) and learning this whole Food as Medicine thing in the hopes of increasing the length of the inhibitor ride. Ask your onc what the Plan B is if it gives you some peace of mind. (sometimes EGFRs go onto a chemo cocktail successfully) like Carbo/Taxol. My onc gave me Plan B & C with the hope in another year or two there’s going to be a next gen inhibitor around With all the EGFR research ongoing, clinical trial participation is a strong possibility. I’d like to think that when the time comes, there will likely be a new & better treatment even possibly a cure on the horizon. Try not to let the black cloud take up too much space. You might find some more specific answers on the EGFR Facebook page. Michelle

On the “bright” side, the pneumonitis was caught very early & you avoided an inpatient stay. Waiting for a few more days is a far better deal. You put that cancer on notice big time!

Well that sucks all around! I hope they can address the port issue. Mine never worked from the beginning thus I was thrilled when it came out! Hang in there!

Hi Katum Hope & wait are not words I’m generally not a fan of. It’s too easy to get lost in the shuffle. You might want to press again for a clearer answer. Something doesn’t make sense to me. Typically the MD who inserts the port is an Intervention Radiologist- not a pulmonologist or internal medicine specialist. They usually don’t follow patients after the procedure. I’d consider making another call to the oncologist if your Mom is not comfortable or the symptoms are worsening. Keep advocating! Let us know how it goes. Michelle

Hi Katum- Thanks for the update! Just a word of caution on the waiting. Learning to be a patient requires patience on the mindset shift to live with this stuff. A simple phone call can make the difference between peace of mind or a visit to the ER. So often times we think we can tough it out when in reality with LC it’s better to be proactive. LC is sneaky & we must not ever let our guard down. I had an issue with fevers after my first dose & landed in the ER. The docs were very aggressive wanting to rule out a pulmonary embolism. A stat CT scan was ordered up & I had a fountain of blood draws. Turned out to be a virus 🦠. I was so glad to be “over treated”! Keep us posted! Michelle

At least they caught it before the onset of any symptoms. Should make this more manageable until the next curve ball. I’m seven months into this now & just when I think I’ve got a handle on it- whammy! Learning to be more like Que Sera Bob...🥴

Hey Barb- Well that pretty much sucks! Hopefully the prednisone does the job quickly. Jersey Strong! Michelle

Barb & Tomm- could be a new set of “Durva twins”! Best to both of you trailblazers... Hope Bob and Cleo are doing well!

Hi Tomm Unless you have an unexpected reaction you should be able to drive. Probably not a bad idea to ride with someone for the first time. I pray all goes well for you! Michelle

Hi Tomm- Sort if related- when I was first diagnosed the treatment plan included Keytruda. We had a long talk with the medical oncologist about IVC. His thinking was IVC had to be spaced out to the mid point of the immunotherapy cycle. His concern was for the potential for an immune system overreaction. I don’t think anyone really knows. 🤷🏼‍♀️

Hey Shelkay- Glad to hear your update. The nurse navigator is in my opinion one of the critical team members. I love my nurse & scheduling team, I don’t know how I would juggle any of these appointments without someone in the health system. Let us know how the second opinion goes on Friday. Michelle

Hi Barb, I read your post this morning and thought about the book by Diana Lindsay, "Something More Than Hope". She is a 13+ year Stage IV LC survivor. When asked about her miraculous recovery, she responded, " I would say that I don't know. I entered into the world of not knowing and I remain in the world of not knowing. You have to be willing to hope and take the risk of hope." I totally understand your reservations about treatment unknowns- however- with our cancer therapies we are literally trailblazing the way forward. Essentially, I think of our group as the 1st generation of hope. You might want to ask the doc what happens if you don't elect to proceed with immunotherapy. You can weigh out the pros and cons. Let us know what the scan results show. Michelle

Hello Opal- Fellow Jersey Girl here. Exit 150. Yes a MRI can show cancer on your spine. Totally understand your situation. I’m really hoping you have a mutation. If that’s the case you might not need radiation- I had spinal Mets at the time of my diagnosis. I was too numb to be terrified. The onc said he wasn’t worried about it so I didn’t dare go to Dr Google. The targeted treatment knocked out the cancer in a few weeks. No radiation required. The MRI showed the cancer on the spine is gonzo. Stay Jersey Strong Michelle

Hello- welcome to your new family. I’m one of those Stage IV healthy people. It’s more common than any of us could have ever imagined. You might want to check out Diana Lindsay’s “Something more than Hope”. She shares her survival story as an EGFR mutant which is so inspiring. Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message. It’s so on point! The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment Another terrific resource is Anti-Cancer Living. Lots of great information in there too. In addition, Facebook has some great support for EGFR & the Exon 20. Knowledge is power & hope is the driver on this road. There’s so much hope on the horizon with all these clinical trials. Stay strong. We’re here for you! Michelle

Hey Shelkay- I watched the March 19th Lung Cancer Living Room from the Bonnie J Addario Foundation this past week on YouTube. It’s two hours but you can skip over the introductions if you’re short on time for the 1 hour presentation by Dr Carbone. He talks about the future of LC treatment in terms of finding a cure. The most exciting report was the future for the mutants! It looks like the industry is moving toward combination of inhibitors to overcome treatment resistance. Similar to HIV disease researchers are looking at cocktails instead of mono-therapies to treat LC mutants. I don’t think you’re going to find much information out there as you’re definitely diving into trailblazer land. The fact the your oncologist is looking at treating the cancer at the molecular level instead of an organ sounds very encouraging to me. Please keep us posted! Blaze on! Michelle

So glad to hear you’re doing well!

Hi Charlie Thanks for your post- it’s very interesting. I’ve heard of a few PDL-1s monitoring their diet & PH levels too They are all in NED. You might want to see if there is an Integrative Oncologist in your area to help you put together a comprehensive treatment plan. When I was first diagnosed, I suppose like many, I did hours of research. For me the internet can be a scary place. My Integrative oncologist aka the hippie doctor is doing a great job. The less time you spend online is more time to enjoy doing other things. Hope this helps! Michelle

Hi Charlie. Sounds like you are making great progress. God is good everyday! So glad you found us. You may also want to check out the breathing excercises by Andrew Weil MD. You can purchase the CD on Amazon or look at some of the YouTube videos. They will help the healing process. I do them everyday & on my last CT scan the “lung junk” was gone. Of course I have my prayer posse too & that works! Michelle

Yes Barb the whole money thing is so completely ridiculous. I’ve just decided to develop a different orientation to zeros & not worry about it. I see brochures all over KU espousing their low cost payment plans. So figure that you’re getting Mercedes healthcare with a Camry type payment. Negotiate, negotiate & negotiate.

Hey Kleo- Great to hear from you! So I get the inflammation & here is what my hippie doc recommended for me: 4 grams of curcumin, 4 grams of fish oil & 2 capsules of Inflammatone all by Wellavate. Plus my weekly spa treatment of acupuncture. Gotta say I was so super skeptical about all the hippie stuff but the look on my medical oncologists face of utter bewilderment is priceless! So far so good for me. Michelle

Hey guys- Something interesting happened today during my acupuncture appointment with the hippie doctor. He asked if I would be willing to be interviewed by a first year med student taking his class on Introductory Integrative Medicine. She’s already learning about the importance of bio-marker testing! She had a pretty good working knowledge of it. So there is hope for the next generation of docs if medical schools are teaching this stuff to the pups. They are also being trained to be more curious about lingering coughs that do not respond to antibiotics or allergy meds. Sounds like we’re making some progress. This gal was excited to meet a real LC mutant- not just one on paper. LOL.

Yippee!

Thinking about you Kleo....

Oh- I just remembered that one of the drugs used for my procedure was fentanyl. Serious constipation followed- so you might want to ask about mixing some Miralax into your egg nog.

Hey Cleo- I has a needle biopsy it was CT guided by the radiology interventionist. They gave me some wonderful drugs to put me in la la land. Didn’t see or feel a thing. No pain afterward either.