RonH

Happy New Year to all as well. I’ve just been living and working and was football Grammy for a while there, not the pros my grandson. Getting ready to start spring practice, which starts February here in the south. No news good or bad health wise. 3 years since diagnosis, almost 2 years finished with treatment. Now on the 6 month schedule for scans, finally. Still have my port, scared to tempt fate by taking it out. I don’t know how I’ll get over that fear. And I get to see all the great ladies at the doc’s office every 2 months for flushes.  Michelle sorry about your mom. 
Hugs and kisses to all!!

 

Hi All, and happy new year. It's a great feeling welcoming another year. And hard to believe the time that passed since Durva forum started. 
I was so truly happy to see posts and especially the 5 year cancerversary, Tomm. Way to go! TX for sharing. It is great encouragement, at least for me. November was 3 years I finished my Durva. March are scans and if all is well, I should be able to do scans annually. Makes me a bit nervous but I will think positive.
M Rower, sorry to learn you lost your Mom. I help out to care for mine, she turns 91 end of this week. 
Lexiecat you're in my prayers.
Barb, Ron, Sillycat, Eagle 13, Tom G and anyone I may have left off here it's great to see your posts.
God Bless, stay safe and healthy. Hugs to all.
Opal
 

Hi Ron...
good to hear your doing well with ALK+, I'm doing well too and hope the rest of the club is staying safe
I'm so excited—it's time to take out the garbage. What should I wear?
So many coronavirus jokes out there, it's a pundemic.
The only jokes allowed during the coronavirus are inside jokes.
 

Just checking in on my friends in the "Durva Club". I hope everyone is doing well and having a nice holiday season. Wishing everyone a healthy and prosperous year to come. The Durva Club sure is quiet these days.....I am hoping that is primarily due to the Durvalumab having helped everyone. I am still during well over in the "ALK+ Targeted Therapy" area. - Ron
 

Hi Justin,
Welcome to the club that nobody wants to be a member of.  Let me first tell you something you need to hear; "Lung cancer is NOT the automatic death sentence it once was!".  We have members here with as much as 16 years since diagnosis with cases starting in Stage 3.  Now, the other thing I can tell you is; stay away from Dr. Google, it is not your friend and the data they use is averaged over a 5-year period so it does not reflect what is happening on the ground right now, today.  We all have a lot of experience to share with you and will be happy to answer your questions.  Just know that from now forward You Are Not Alone. 

One of our leading members wrote an excellent treatise called "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find that here. 
As you learn more of your diagnosis and develop questions please share them here and we'll provide the best responses that we can for you.  Receiving a lung cancer diagnosis is overwhelming, but do your best to stay calm and focused on learning more about this disease, spending some time here and getting involved with your treatment team.  Also, if a biopsy is taken (surely it will be) you need to advocate for biomarker testing to see if there are any genetic anomalies that would make you eligible for immunotherapies now or in the future.
Hang in there, and I look forward to hearing more about your case and any questions you have.
Lou

Hello All...
I thought I'd visit this really quiet support forum. I don't see questions coming from new Durva people or anyone telling us how their infusions are going and if they are having any side effects or questions.  How is your blood work, fatigue? Are you having your TSH checked? Mine went up to 139 with no one testing, normal is .3 to 5 mU/L.  Get your Pd-L1 checked too.
I want to share my good news with my fellow travelers. Today is my 5 year canceranniversary. After all the tests I was diagnosed with Stage 3a lung cancer. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and  added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo. I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and  lucky me after that I got to take Durva. I have been in remission for 3 years now.
I want people to know there is hope and Durva does work for many. 
Stay safe.
old joke   ....My aunt’s star sign was cancer, pretty ironic how she died. – She was eaten by a giant crab

Vicki,
Are different immunotherapies used for different tumor compositions? In a word, yes. There is a concise but complete discussion of immunotherapy treatments and lung cancer here.
Stay the course.
Tom

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. 
 
🦅
 
 

Exactly one year ago I had my 26th and last Imfinzi infusion. So far so good!!  

Hey Barb!
It’s a weird anniversary someone outside our circle of friends here would understand so a big hug of congratulations to ya!!! That’s great!  

Yeah Barb!! It's hard to believe isn't it!? You go girl!!!
Let all of us in the Durva Club celebrate many more anniversaries with you!
Opal

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

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

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

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

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

https://www.jto.org/article/S1556-0864(21)00022-8/fulltext?fbclid=IwAR2DlB6INSmAvksYzf94yS-txd8wGG_1jjI_fWZiWi9Tl3-Np1tcmEUUtKU
Good news. Hope the link works!

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

Silly at-I still have my port. I almost feel like if I take it out I’m tempting fate-as soon as it’s gone I will need it. 
I’m going to wait a while. 

Barb, a little late, but good for you! I hope every cell comes back cancer free!
On another note, I finally finished my year long (very long) treatment of Durvalumab! On Aug 24th, Yay me! There were times I thought I would rather die. Don't fret y'all newcomers to the Durva Club 🤪 I can be quite dramatic at times! But all's good. I had a few hic cups along the way.
I welcome you all to the club. It has helped me to navigate my journey quite well. I have a CT Scan and Bone Scan schedule at the end of this month, then I see my Oncologist on November 12th for the results. Happy to say I am off all pain meds and Xanax too. However, I am way too squirrely and think maybe I should be on some kind of anxiety med, also I was given Tramadol for pain, I hate it, makes me want to puke. 
Michelle, even tho I gave my APRN and DR the info on Naltrexone for pain relief, they insist that it is for drug addition. But they are willing to refer me to a pain clinic. Unfortunately, they are missing the point completely. Ugh! My Onc feels my pain is cancer related so I should no longer be in pain WTF! Am I now cancer free? Does she know something I don't?
Guess I will just wait for my scans and appointment in November 😁
Have a great weekend everyone
Take care
Roseann

I see a lot of new names here and not many of the old "Durva Club" members which I hope is a good sign that Durvalumab worked for many. I did do a member update elsewhere in the Lungevity forums, but I wanted to post here as well as I spent so much time here over the past 2 years and met so many great people here. I still stop by here from time to time to check on you all. I would name names, but I don't want to leave anyone out because so many have been an inspiration and provided support, even during those "dark times". You know who you are!
My Update:
Diagnosed NSCLC 3a in May of 2018 with initial treatment being Concurrent Chemo/Radiation which was then followed by Immunotherapy. After 18 Durvalumab Infusions my CTs indicated probable recurrent cancer in main tumor and possible additional lymph node involvement/progression. Due to indicated likely progression, the Immunotherapy infusions were stopped. From subsequent NGS Testing (Tempus) of a biopsy tissue sample I discovered that I was PDL-1 Negative and EML4-ALK Positive. In October 2019 I started Targeted Therapy with Alectinib. Having had several CT's Biopsies, and PET Scans since, each indicating less indication of progression, the findings of my latest CT last week now read:  
No convincing signs of recurrent or metastatic disease in the chest. Postradiation fibrosis of the right upper lobe as described previously noted surrounding groundglass changes and nodularity of the right upper lobe has resolved and was probably related to postradiation pneumonitis. Mild scarring noted in the lingula, otherwise the lungs are well aerated. No new mass, consolidation, pleural effusion or new worrisome nodularity.
A great 64th birthday present!
Hope all are well.
RonH

I won the appeal!!!  Just got a call from the nurse case manager for the insurance company. PET approved!  She’s calling the oncologist to get it scheduled. I already left them a message as well.