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Eagle13

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  1. Like
    Eagle13 reacted to DFK in Durvalumab   
    Dear dear Opal, 
    What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
    As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
    As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
    Take Care, DFK
     
  2. Like
    Eagle13 reacted to DFK in Durvalumab   
    Good Wednesday to all,
    Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
    Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
    I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
    Enjoy your day and greet it head on with gratitude.
    Take Care, DFK
     
     
  3. Like
    Eagle13 reacted to Rower Michelle in Durvalumab   
    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
  4. Like
    Eagle13 got a reaction from Charles in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
  5. Like
    Eagle13 got a reaction from DFK in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
  6. Like
    Eagle13 got a reaction from DFK in Durvalumab   
    When I was on Durva they told me alcohol was okay. Like your Onc said, moderation.  If you like chocolate beer I have a couple recommendations
    ”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing
    or
    Samuel Smith’s “Organic Chocolate Stout”
     
    cheers 🍻
    🦅
  7. Like
    Eagle13 got a reaction from Robert Macaulay in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
  8. Like
    Eagle13 got a reaction from Tom Galli in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
  9. Like
    Eagle13 got a reaction from Tomm in Durvalumab   
    Hi Tomm,
    I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday.  There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018.  I pray that the Tagrisso will keep working for a long time.
    Thanks for asking!
    Take care,
    🦅
  10. Like
    Eagle13 got a reaction from Sillycat1957 in Durvalumab   
    When I was on Durva they told me alcohol was okay. Like your Onc said, moderation.  If you like chocolate beer I have a couple recommendations
    ”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing
    or
    Samuel Smith’s “Organic Chocolate Stout”
     
    cheers 🍻
    🦅
  11. Like
    Eagle13 got a reaction from Tomm in Durvalumab   
    When I was on Durva they told me alcohol was okay. Like your Onc said, moderation.  If you like chocolate beer I have a couple recommendations
    ”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing
    or
    Samuel Smith’s “Organic Chocolate Stout”
     
    cheers 🍻
    🦅
  12. Like
    Eagle13 got a reaction from Rower Michelle in Durvalumab   
    When I was on Durva they told me alcohol was okay. Like your Onc said, moderation.  If you like chocolate beer I have a couple recommendations
    ”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing
    or
    Samuel Smith’s “Organic Chocolate Stout”
     
    cheers 🍻
    🦅
  13. Like
    Eagle13 got a reaction from DFK in Durvalumab   
    Well said Michelle!
  14. Thanks
    Eagle13 got a reaction from Rower Michelle in Durvalumab   
    Well said Michelle!
  15. Like
    Eagle13 reacted to Rower Michelle in Durvalumab   
    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
     
     
     
     
     
  16. Sad
    Eagle13 got a reaction from Charles in Durvalumab   
    Barb,
    I developed a pleural effusion while on Durva.  Ultimately, I was taken off the Durva because of it.   The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me.  I had 4 Thoracentisis done removing 6 liters of fluid from my left lung.  The fluid was cancerous and moved me from 3B to stage IV.   That was last July,2018.  I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday.  I am considered stable with no progression.  There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all.   I recommend asking for a biomarker test.  There are many new treatments beyond immunotherapy.
     
    🦅
  17. Thanks
    Eagle13 got a reaction from Robert Macaulay in Durvalumab   
    Barb,
    I developed a pleural effusion while on Durva.  Ultimately, I was taken off the Durva because of it.   The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me.  I had 4 Thoracentisis done removing 6 liters of fluid from my left lung.  The fluid was cancerous and moved me from 3B to stage IV.   That was last July,2018.  I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday.  I am considered stable with no progression.  There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all.   I recommend asking for a biomarker test.  There are many new treatments beyond immunotherapy.
     
    🦅
  18. Like
    Eagle13 reacted to Kleo in Durvalumab   
    Yes Rower Michelle!.... This is the new protocol now....just as the durva was. 
    Gotta wonder..... how similar are Tecentriq and durvalumab considering they target the same thing? Just like Keytruda and durvalumab….🤔 
     
  19. Like
    Eagle13 reacted to Rower Michelle in Durvalumab   
    I’m willing to sell tickets to that show down tomorrow!  Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts.  It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation.  Early studies suggest good results in PFS.  
    Ask the doc to show you which abstract is most applicable and have them provide you with a copy.  Sounds like this is going to be worth it in the long run.  
    Good luck-lock and load.  
  20. Like
    Eagle13 got a reaction from Kleo in Durvalumab   
    Kleo,
    Did they do the full biomarker tests?   I think I would ask for another full test.  It can be done with blood.
    https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/
    praying for the best 
    🦅
     
  21. Like
    Eagle13 got a reaction from Barb1260 in Durvalumab   
    Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups.  I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected.  The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment.
    🦅
  22. Like
    Eagle13 got a reaction from Tom Galli in Durvalumab   
    Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups.  I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected.  The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment.
    🦅
  23. Like
    Eagle13 got a reaction from Tom Galli in Durvalumab   
    There are breakthroughs in treatment taking place everyday.   This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions.  Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice.  It has made a world of difference for me. 
    Forums like this one and other focus groups you can join are a wealth of information.  Be sure and do your own verification on things you learn.
    🦅
  24. Like
    Eagle13 got a reaction from Barb1260 in Durvalumab   
    There are breakthroughs in treatment taking place everyday.   This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions.  Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice.  It has made a world of difference for me. 
    Forums like this one and other focus groups you can join are a wealth of information.  Be sure and do your own verification on things you learn.
    🦅
  25. Like
    Eagle13 got a reaction from Curt in EGFR - Tagrisso ( osimertinib)   
    Almost 8 months on Tagrisso now.  Scans showing no progression and stabilized.  Everyday is a new normal.  Managing the side effects and able to do things I could not before Tagrisso.
    🦅
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