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Eagle13

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  1. Like
    Eagle13 got a reaction from RonH in Durvalumab   
    Hi Mike,
    Biomarker test can be done from a blood draw.  Durvalumab did not work for me.  I was not tested for PDL1 prior to the infusions.  I had 8 infusions and ended up with a Pleural Effusion.
    I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 
     
    🦅
     
     
  2. Like
    Eagle13 got a reaction from Rower Michelle in Durvalumab   
    Hi Mike,
    Biomarker test can be done from a blood draw.  Durvalumab did not work for me.  I was not tested for PDL1 prior to the infusions.  I had 8 infusions and ended up with a Pleural Effusion.
    I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 
     
    🦅
     
     
  3. Like
    Eagle13 got a reaction from LexieCat in Durvalumab   
    Hi Mike,
    Biomarker test can be done from a blood draw.  Durvalumab did not work for me.  I was not tested for PDL1 prior to the infusions.  I had 8 infusions and ended up with a Pleural Effusion.
    I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 
     
    🦅
     
     
  4. Like
    Eagle13 reacted to RonH in Durvalumab   
    Hi Mike,
    As a former Durvalumab user, I wanted to ask if you had your biomarker testing done before starting on the Immunotherapy? I too had the chemo and radiation and was then started on Durvalumab. After receiving 18 infusions, a CT/PET indicated a possible progression, so my ONC had a lung needle biopsy sample sent off for Biomarker testing. This testing confirmed that I was PDL1 negative, and ALK positive, so the Durvalumab had little or no chance of working. About the only good thing from the Durvalumab treatments was that I got to meet many great people here in the Lungevity Forums. Eighteen months ago I then switched to an oral Targeted Therapy drug, Alectinib. It has its own unpleasant side effects to deal with, but not quite as many as I had with Durvalumab. Just saying that if you haven't yet had the biomarker testing done, you should discuss with your Oncologist about doing so. Best Wishes.
    -Ron
  5. Like
    Eagle13 reacted to Rower Michelle in Durvalumab   
    Hi Mike, 
    Welcome to the Durva Club.  While I'm sorry you find yourself here, this is a good place to learn from a number of others who have crossed the Durva finish line.  
    I'm very familiar with Jane's program.   Here is the US, it's considered fairly controversial.   She's a big supporter of Metformin, and I've had physicians over here in the US take a deep dive into the research.   It's all inconclusive.  Supplements with lung cancer treatment can become very tricky.  One of my peers took a DIY approach and ended up unintentionally impacting the effectiveness of his treatment plan because it washed the chemo out of his system too quickly. 
    I am treated by a Board Certified Physician in Integrative Medicine. There are a number of supplements that I take that were reviewed and approved by both my clinical pharmacist and my oncologist.  My oncologist will generally go along with what the pharmacist recommends.  I am taking one off label drug, Low Dose Naltrexone (which is mentioned in the footnote of Jane's book).  LDN does have clinical evidence to support it's efficacy.  I've been taking that now for two and  a half years.  My labs and supplements are carefully monitored.  In the beginning as my treatment plan was initiated there were quite a few and as my cancer stabilized, many of them were discontinued to hold in reserve if there is a recurrence.  
     I think physicians's attitudes are starting to change about some of the alternative/integrative medicine approaches.  I've had lengthy discussions with my oncologist about this, at first he was skeptical, then he was curious, and now he says, let's not do anything different without talking to your Integrative Doctors.  
    Here's a resource from NY, Memorial Sloan Kettering for you to take look at: 
    https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
    I hope you find this helpful.  
    Michelle 
  6. Like
    Eagle13 got a reaction from JamesB in Durvalumab   
    I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
    My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
     
    🦅   
  7. Like
    Eagle13 got a reaction from Tom Galli in Durvalumab   
    I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
    My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
     
    🦅   
  8. Like
    Eagle13 got a reaction from Sillycat1957 in Durvalumab   
    I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
    My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
     
    🦅   
  9. Like
    Eagle13 got a reaction from LouT in Durvalumab   
    I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
    My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
     
    🦅   
  10. Like
    Eagle13 got a reaction from Opal in Durvalumab   
    I had my port removed in Dec 2018.  Last Durva infusion was July 2018.  I was glad to have it removed and have not needed it since. 🙂
    My treatment changed and am fortunate that I have not needed any infusions.  I feel very blessed. 🙏🏻
     
    🦅   
  11. Like
    Eagle13 reacted to Kate7617 in Durvalumab   
    Hi Polly, something that I learned along the way, check what your PDL1 is, mine was negative,  also make sure that auto immune disease does not run in family history. I had a very bad experience with durva, and right from the start had very very bad side effects, also with breathing. I do pray that the Dr that is treating you is on top and has your complete recovery in mind, unfortunately I didn't have that experience and now suffer from the after effects, I am not trying to scare you, however you need to be your own advocate, I certainly wish you every success and hoping that you are breathing a little better now! You have had success with chemo radiation and that is TERRIFIC! All I know is that Durva is not suited for everyone. Also check to see if you have bio markers. You have to be aware of all that is available to you. Prayers are coming to you now from me! Kate
  12. Like
    Eagle13 got a reaction from Tom Galli in Durvalumab   
    Request a biomarker test.  It can be done with a blood draw.  Depending on the results you may match with one of the targeted therapy drugs like Tagrisso.  Durva didn’t work for me.  I was biomarker tested and prescribed Tagrisso.  I have been on Tagrisso for ~18months now with no progression.  
     
    Never forget the power of prayer! 🙏🏻
     
    🦅
  13. Like
    Eagle13 got a reaction from DFK in Durvalumab   
    Request a biomarker test.  It can be done with a blood draw.  Depending on the results you may match with one of the targeted therapy drugs like Tagrisso.  Durva didn’t work for me.  I was biomarker tested and prescribed Tagrisso.  I have been on Tagrisso for ~18months now with no progression.  
     
    Never forget the power of prayer! 🙏🏻
     
    🦅
  14. Like
    Eagle13 got a reaction from Rower Michelle in Durvalumab   
    Request a biomarker test.  It can be done with a blood draw.  Depending on the results you may match with one of the targeted therapy drugs like Tagrisso.  Durva didn’t work for me.  I was biomarker tested and prescribed Tagrisso.  I have been on Tagrisso for ~18months now with no progression.  
     
    Never forget the power of prayer! 🙏🏻
     
    🦅
  15. 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
     
  16. 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
     
     
  17. 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
  18. 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,
    🦅
  19. 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,
    🦅
  20. 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 🍻
    🦅
  21. 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,
    🦅
  22. 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,
    🦅
  23. 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,
    🦅
  24. 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 🍻
    🦅
  25. 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 🍻
    🦅
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