Opal

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Tomm, CONGRATS!  Welcome to the I'm done my Durva club.
Barb will be coming around the corner very soon.  Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. 
Stay positive and stay well.
Hey Tomm, the K9s are asking why humans are wearing muzzles..  

Roseann,
Keep after them on the TSH (and the T3 & T4) tests. After 5 months of complaining about shortness of breath and fatigue while on Durva, my ONC finally tested my T4 and TSH. My T4 was down to 3.4 (normal range 4.9 - 12.9) and my TSH was up to 44.03 (normal range 0.178 to 4.53). Needless to say I was not a happy camper for not being tested sooner. The ONC has been slowly (and I do mean slowly) increasing my thyroid meds starting at 50mcg per day and working its way up over the past 10 months to 150 mcg. Just had another TSH test two weeks ago and my TSH was still at 18.6 although the ONC says my T4 was about normal (not 100% sure that I believe him as I do not see any T4 test results in the lab report, but the free thyroxine index was about normal). He however did bump up my Tirosint dose to 175mcg per day. Of course I had just received a 3 month supply of the 150mcg capsules, so we agreed to just be prescribed 90 days of 25mcg capsules to supplement the 150's figuring that was the economical thing to do. Of course that confused the hell out of ExpressScripts who promptly put a hold on the prescription and didn't bother to contact anyone. Online it said that they were processing the prescription and to check back in 24 hours. I checked daily for 1 week only to find out that was BS, it was really on hold as I found out this week. I feel a little sorry for the customer service rep and their pharmacist that I finally spoke with after being on hold for 45 minutes and explaining the situation 3 times before they comprehended that 150 + 25 = 175, and that I was saving them money. Then being told that I could go get it filled quicker at the local pharmacy was the final straw. My response was "so ExpressScripts is officially recommending that an insured customer with advanced lung cancer who is already respiratory compromised go stand in line at a crowded retail pharmacy in a state with stay at home orders in the mist of the COVID-19 pandemic?" Needless to say, my prescription is being express delivered to me tomorrow.
There are some very fine medical professionals out there, but you have to advocate for yourself and keep an eye on what is happening.
-Ron

Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.
Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 
Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.
Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.
Take Care, Blessings, DFK
Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

DKF   
I've already heard like seven cancer puns today...
If I hear tumor it's gonna benign

Well here I am waiting for #22. Saw the onc. She also states CTs are better than PETs and she’s not worried about it. Asked her how will we know if I get to NED. “I consider you NED and you are all scar tissue”. Woohoo 

You didn’t miss anything.  DFK and I received a PM from our JG with an update. 
Opal posted a request for prayers as her husband was admitted to the hospital at the same time she was having scans.   
I think the best way to support Opal is to find the best Jersey style pizza and eat at least two slices.  She’ll be back to the Forum when she’s ready.  
 
 

The entire family feels Opal’s loss.  Thank you for letting us know.  When Opal is returns to the group, we’ll all be here with open arms.  
Michelle

Good Sunday Morning to all,
A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 
Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.
At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 
I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.
Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 
I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 
Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.
We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 
Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.
Let me also relay that Opal's last scan was reported as stable, next check in 3 months.
Take Care, DFK

 
 

Hi Polly,
Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 
I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 
Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.
Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness
Take Care, Blessings, DFK
 

Grahame,
You are doing wonderfully and I am thrilled your scan showed a significant decrease in size.
Off the top of my head I can't remember my tumor size but it was significant, something like 5cm x 7cm and my first scan showed a 30% reduction and that trend continued until it was no longer visible on my CatScans......I can only see the same happening to you.  
A large area with margins in my lungs to radiate which is why my respiratory status is the most compromised. I always said my docs were looking for catastrophe's while I was more interested in little nuances that were particular to me. As soon as my heart responded with tachycardia with minimal exertion I requested a Cardiology consult and a repeat Pulmunary Function Test. Not unusual to have cardiac involvement after radiation, especially where my tumor resided. And I wanted to compare my lungs to my baseline PFT taken at diagnosis. Fortunately my heart is in great shape and can handle the assault that my lungs went thru. My PFT revealed some significant functional changes and a CatScan revealed Grade III pneumonitis. Because it was caught early, my pneumonitis resolved easily enough and I was able to continue with my Durvalumab. My PFT also improved to near normal.
I'm sure you're empowered to intervene if you feel the need to do so to ensure your best possible outcome. Another great tool was my phone camera. I remember once when I told my doctor I experienced petechiae on my lower extremities. He said that it wasn't possible. I then whipped out my phone and showed him some pics....he laughed and said, Oh yeah, that's petechiae. I think that was a turning point for him and me.....he started to really listen when I had something to report. And I was reassured that he was truly listening to my "nuances". 
I feel so very blessed to have survived treatment essentially unscathed. I wish the same for you.
Take Care, Blessings, DFK
 
 

BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results.
Best wishes for continued Durva treatment.
Opal
 

Opal-Prayers and positive vibes for your scan.
Michelle and Ron-Reading your posts about Alk+ was like having a Sunday coffee on my deck with you two. Very nice.
Take Care, DFK

BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results.
Best wishes for continued Durva treatment.
Opal
 

This isn't the proper forum for my request, but am most familiar with my Durva buddies here. 
Can I ask, if I may for your prayers and good vibes please. My hubby is in treatment for this dreaded disease but his is PanCan stg 4. He was doing great for 3 years till recently. He's had pain and docs trying to get his meds right and get him stronger to do chemo again. . It's been a nightmare. 
I am thankful I've been strong as I have been to care for him. 
Thank you, Opal

DFK, ecstatic to hear your great news! 
I'm scheduled for Ct this week. Hoping and praying for good news too. I need to ask why I don't get PET scans more often? 
So happy for you!!

This isn't the proper forum for my request, but am most familiar with my Durva buddies here. 
Can I ask, if I may for your prayers and good vibes please. My hubby is in treatment for this dreaded disease but his is PanCan stg 4. He was doing great for 3 years till recently. He's had pain and docs trying to get his meds right and get him stronger to do chemo again. . It's been a nightmare. 
I am thankful I've been strong as I have been to care for him. 
Thank you, Opal

This isn't the proper forum for my request, but am most familiar with my Durva buddies here. 
Can I ask, if I may for your prayers and good vibes please. My hubby is in treatment for this dreaded disease but his is PanCan stg 4. He was doing great for 3 years till recently. He's had pain and docs trying to get his meds right and get him stronger to do chemo again. . It's been a nightmare. 
I am thankful I've been strong as I have been to care for him. 
Thank you, Opal

DFK - Thank you for inquiring. And congratulations on the NED. Enjoy your west coast vacation, you deserve it!
Yea, I am still lurking about and checking on the Durva Club members and keeping all of you in my thoughts. I've been kind of silent with nothing new to post but do read every posting in this Durvalumab group. So happy the read of some of the NED results with the Durvalumab treatments. I see there are a few new members here so welcome to them from a former Durvalumab patient with 18 infusions under my belt until after having a reoccurrence and one new local lymph node involvement and then finding out that I was PDL-1 Neg and ALK+ (confirmed CT/PET/Lung Needle Biopsy/EBUS). From what I understand, since there was no progression elsewhere I am still classified as a Stage 3A. 
As I reported last December, after 6 weeks of being switched from Durvalumab to a TKI (ALECENSA - [Alectinib]) due to the ALK+ mutation, the December CT had indicated a possible small effusion and a possible slight case of pneumonia at which time I was placed on antibiotics. At the begining of January I had a X-Ray to check on that which resulted in the radiologist reporting no changes to the malignancy, but also no indications of an effusion or pneumothorax. I am scheduled for my next CT in early March. 
It is still a struggle to get my ONC to remember to order Thyroid tests along with the other monthly blood tests/port flush. After reminding him last month that I likely still had elevated TSH levels and being told that that it had dropped off the radar, it was finally tested again several weeks ago, with a TSH level result of 16. It's been almost a year now of slowly increasing my dosage of Tirosint (Synthroid) and I've only dropped from a high of over 44, down to 16. Getting more than a little impatient with the slow pace of treatment, but at least my T4 levels have just now risen back up into the normal range. His opinion was that the TSH level is trending in the right direction. My response was that I would hope so since it has been nearly a year! My latest "discussion" with him was why he has never, not even once, had my CPK levels checked. He started to say it wasn't necessary until I whipped out the info sheet on ALECENSA which states that it should have been checked. Long story short, it now WILL BE checked in early March. With the cost of the Alecensa, I hit both my yearly deductible and yearly max out of pocket within the first two weeks of January, so I told him that I was having this and any other test medically justified test that I wanted whether it was there or through my PCP. One thing that I've learned from all of this is that you have to learn as much as possible from others (like in this forum) and then advocate for yourself. 
I do have to say, although I, like many of you, I suffered through some of the many side effects of Durvalumab, but I can also say that the side effects of the Alecensa are no picnic either. Other than taking 8 capsules a day, primarily my main complaints are with the constant fatigue and shortness of breath after any exertion at all. Of course the weight gain side effect also doesn't help either of those issues either. I am becoming very impatient about getting the results of my next CT as I am curious if this TKI (at about $15K per month) is helping or not. Unfortunately unlike Durvalumab, Alecensa is not a possible cure as it only delays progression for some people until such time that the beast mutates again and finds a way around that medication. I guess luckily when that time comes, there is a third generation TKI now available that works even better for many patients. I guess we'll see.
In other matters, I am still working full time, but giving either retirement or going out on sick leave and then LT disability some consideration for this year. I probably will if I progress over to Stage 4. I don't mind the work (office work) except for maybe working with some of the millennials, but I dread the walk between our parking garage and our office building everyday. By the time I get there I am huffing and puffing excessively at which times it takes 10 minutes to start breathing normally and my heart rate to return to normal. Decisions decisions….
I am sending well wishes to everyone here.
Till next time...take care and continue to fight the fight! My thoughts are with each and every one of you.
RonH

🙏 Opal - You and your hubby will be in my thoughts and prayers. 🙏