Opal

Thanks Barb, Michelle and Grahame for your kind words of support.
 
It would be no surprise to anyone that I had a sleepless night prior to my MD appt to discuss PT/CT results. I felt especially vulnerable since I was experiencing new aches and pains from the flu. Pulled a muscle below my ribs from vigorous coughing and strained my lower back, again from vigorous coughing. In my mind, these were solid indications of metastasis to my ribs and spine. As I mentioned before, fear of the unknown are horrible victors and there are no boundaries as to what my overactive mind can conjure up. My dear husband is always tasked with pulling me back to earth from the stratosphere of the "C" what if's.
 
Ron H, thanks for reading, how are you faring with treatment?  Tomm, Tom, Curt, thanks for reading and your support. TJM, thanks for reading and welcome. Your tenacity will take you far. 
 
Early on in my treatment, I had a little secret that I kept to myself. During my bike riding, I envisioned that with each stroke of my foot pedal, I was killing "billions" of cancer cells. It became my reason to never miss a ride. Even when the weather was iffy, or I just wasn't feeling the love, I still had my task of killing billions of cancer cells. One especially rainy day, there was a break in the clouds and I ran outside, bike in hand screaming to my husband, I've got to go, I got some cancer cells that need killing. He of course was befuddled but knows that in my "C" world, I am always trying to work things out. 

Take Care everyone, DFK
I was wondering all night where the Sun had gone, then it "dawned" on me.....

Happy Friday to All,
February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕
Questions I had for Oncologist
1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.

R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 
2) What now? 
 
R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
 
Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.
I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 
Thank you everyone for your support. 
Take care, DFK
 

Michelle-guess it was the heels because it’s much better today. Didn’t see the onc today but got #19. And I lost 1 lb so woohoo-gotta celebrate the small things. 

Kind of seems like only us ladies are putting on the pounds. No where on Durva adverse effects did I see weight gain mentioned.

Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs.  The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted.  Doesn’t make sense to me but these were two different docs in competing health systems.  Oh well.  
 

Hi Opal. My doc says no. The nutritionist agrees that it does cause weight gain as everyone in the practice on it is complaining about gaining weight. Que sera sera

Kind of seems like only us ladies are putting on the pounds. No where on Durva adverse effects did I see weight gain mentioned.

Hi Barb,
Yes that is one of the tricks the nurses have me do in addition to the pumping, it's amazing what they have up their sleeves isn't it! I know know you certainly are doing the count down now for sure, I have my calendar marked with the infusion number I'm on so I can keep track of them. But dang it, I keep having to cross them off and change them, so now, I will just go with the flow until I get close. Like around week 18 maybe LOL! As for gaining weight, I'm right there with you, I've gained 30lbs! but I did need about 20 of them! But now it has to stop. I got my T&A back Yay! I will certainly enjoy the Y 😁
Hi Michelle,
I am so looking forward to Tai Chi, my balance is so off kilter. Can't do a tree pose in Yoga any more.  I will ask my Neurologist about the Naltrexone, is it a prescription medicine, or over the counter? Glad to hear how the Live Strong Program improved your Lung function that's awesome, I could use some of that, my oxygen levels are are anywhere from 96-98 when my levels are checked I would love to be at 100%
Wishing everyone a great night,
Roseann
 

Hi Roseann,
I’m excited for you!  I’m in week two of LiveStrong, so far very happy with the program.  I don’t expect it’s going to take any of this alectinib weight off but it will help with strength.  I’ve been doing Tai Chi for a year now. I believe it helped restore my oxygen capacity back to 100% (doc said given the condition of my right lung at diagnosis he’s surprised I’ve had a such significant increase) and greatly improved my balance.  I sailed through the balance assessment at LiveStrong.  
 
If you’re looking for a creative non opioid pain relieving potential cancer fighter that is inexpensive ask your naturopathic doc about low dose Naltrexone.  It doesn’t interfere with immunotherapy- my friends on Keytruda also take it.  
Keep us posted!
Michelle

Thank you everyone for your kind words and induction to the POST Durva Club (PDC).
There's not much written about returning to a symptom free pre Durva life so I will do my best to journal my "findings" and share with all. I am still officially, with a BMI of 24.58, within normal weight parameters for my height. Of course 25.0 is considered overweight. "Overweight" is not a label I'm comfortable using but I do understand the stress of our bodies carrying that extra weight. So my 30lb weight gain, fatigue, joint/muscle issues and headaches are annoyances I look forward to looking at in the rear view mirror....adios, au revoir, goodbye and good riddance. We shall see.
Barb, Tomm, and Roseann-Opal and I (Official PDC's) are waving you forward......as well as all your faithful Lungevity cheerleaders. 
Thanks all, Take Care, DFK
P.S.-Yes Michelle, my oncologist shaking my hand at every visit was a quirky little deal and I did ponder the whole Ground Hog Day aspect, "Have we met?". But after awhile, I realized that he's just a sweet gentle man as in Gentleman, and it truly was a sweet greeting gesture. 

Rock on Wonder Woman!  I chuckled this morning about your oncologist, reminded me of the movie Fifty First Dates.  I’m quite sure you left your mark and due to your tenacious spirit you have paved a smoother road for future Durvas.    I suspect the team learned more from you given this new world of high tech treatment.  
Well done!   Just like Tom Petty said... “now I’m FREE”.   I hope you “fly like an Eagle” into this next NED chapter.  Hugs to you. Hooray!  
Michelle

DFK, welcome to Post Durva Club 👏. You did it!!
Your updated post gave me goose bumps. So can relate.!  Did you ring tge bell?  And may I say YOU are a "tough cookie" or wonder woman. Your  travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. 
Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. 
Also mindful of my blessings,
Opal
 

DFK, welcome to Post Durva Club 👏. You did it!!
Your updated post gave me goose bumps. So can relate.!  Did you ring tge bell?  And may I say YOU are a "tough cookie" or wonder woman. Your  travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. 
Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. 
Also mindful of my blessings,
Opal
 

Congrats to DFK!  Enjoy the freedom!  

DFK, welcome to Post Durva Club 👏. You did it!!
Your updated post gave me goose bumps. So can relate.!  Did you ring tge bell?  And may I say YOU are a "tough cookie" or wonder woman. Your  travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. 
Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. 
Also mindful of my blessings,
Opal
 

DKF
really great news that your NED and treatment is complete, sounds like you had a great team. I want to thank you for posting the good and the not so good of your journey.
 

Grahame-I have no personal experience with Vitamin C infusions, Metformin, a cholesterol lowering Statin or Mebendazole that is used either alone or in conjunction with Durvalumab immunotherapy. I have read on the benefits of Vitamin C and Metformin. The dog dewormer has been making the rounds recently but I have not read enough about it to have an opinion.
Roseann-So sorry to hear your #11 has been held in lieu of possible Uveitis. Hoping you get that eye evaluated el pronto. And please share what your Naturopathic MD has to say. You seem very spirited and focused to take care of business. Good for you, keep blazing.
Opal and Roseann-I am beyond ecstatic to have had my port inserted but it was a traumatic insertion. I requested conscious sedation because I KNOW I cannot handle even the mention of pain. But the radiologist took quite a bit of time convincing me it would be a short procedure, a walk in the park, most patients get by very easily and comfortably with just local anesthesia. We went back and forth about it and he told me that on the day of my procedure, I could opt for either. Well stupid, stupid me believed him about it being nothing more than an IV stick.....so I gave consent just for local numbing.
 
And for me it was horrific. Though I was numb, I felt every tug and pull and manipulating that was going on and it was not conducive to feeling calm and nurtured. I could hear the Radiologist instructing his team on what he needed and on how the catheter was not cooperating.....words no one should hear when you're lying on the table, AWAKE and anxious. To add insult to injury, they bandaged me up good and secure, only for me to hear the words, "Aw shucks, I forgot to flush her port". Off came all the layers of occlusive bandages stuck like super glue to my skin because they used benzoin tincture. So my skin was ripped raw and ANOTHER dressing was applied after I was flushed with Heparin. Took my skin a couple months to heal from that assault. 
I love my Port, but I will never let another Physician convince me what is best for me when I KNOW myself better than anyone. I really wanted to trust what my radiologist was saying but he should have listened to my aversion to pain and needles and my ease into anxiety with intrusive procedures. So after grand standing about this whole Port thing, you bet'cha Roseann, I'll be knocked out plenny good with conscious sedation for the removal. Opal, again, you are some tough cookie to have had the fortitude to take those needle sticks week to week. I applaud you. 
 
Take Care all, DFK
 
 

Good Thursday to All,
Crossed the finish line yesterday. Very uneventful #26 infusion.
And to be honest, a little bittersweet. I was saying goodbye to the very people that have carried me for the past 17 months. The same staff who:
taught me about my cancer as I cried and sniffled,
who navigated ALL my appt's in a different city,
who taught me about my Durvalumab,
who laughed at my comedic antics and stories,
who allowed me to slum in a private infusion room for a couple hours with laptop set up while waiting for my drug,
who juggled appointment times so I didn't have to fly in an extra day,
who held my hand during numerous procedures,
who massaged doctors offices so I could see Specialists a little earlier than the usual 4 months waiting time
who kept me up to date in copies and DVD's of my medical records,
(My Pulmonologist) who gave me his personal cell so I could call him instead of flying in for ONE. MORE. APPOINTMENT, ditto for my PCP,
(My Cardiologist) who at first staid and stiff now smiles and gives me a hug when we pass in the hallways. 
(My ENT) who apologized for the long wait but had me diagnosed and fixed within two weeks of our meeting, and who explained in detail how radiation paralyzed my vocal cords, 
(And my Oncologist) who though rarely uttered more than a few words, always smiled at me and shook my hand (18 times) as if meeting me for the 1st time and always told me what my next step would be. I learned to trust this quiet and kind man in my journey, and together with the loving help of all, they have brought me fairly unscathed to NED. I am more than appreciative, I am overwhelmed with my good fortune.
So for each "today", I will do my best to be mindful of my blessings. I'll be sure to post follow-up progress reports. 
Take Care, DFK
 
 
 

DFK, you must be counting the days by now. I know I did. Time seems to fly except when you want it to. Just think, 2 weeks from now at this time Durva will be behind you. Congrats on a mission well accomplished.
I vote you and Rower get together and  take your knowledge, encouragement and gift you both seem to have to help others with your words, and travel the world, or at least across the States, cheering others like us on.  
Giving thanks,
Opal

Hi DFK,  Thank you, but no tough cookie here. My doc said I have good veins (hope they still are) and there was no need for a port unless I really wanted one. I get weak in the knees and was more afraid of a port so I declined. I will say some infusion staff were so good I never felt  the needle. 
Anyway, I think you got this and will breeze thru your port removal just fine. Remember you came out on top before and you will do it again. Sending good wishes and prayers your way.
Take good care,
Opal

Hi DFK,  Thank you, but no tough cookie here. My doc said I have good veins (hope they still are) and there was no need for a port unless I really wanted one. I get weak in the knees and was more afraid of a port so I declined. I will say some infusion staff were so good I never felt  the needle. 
Anyway, I think you got this and will breeze thru your port removal just fine. Remember you came out on top before and you will do it again. Sending good wishes and prayers your way.
Take good care,
Opal

Hi Grahame, I'm 3B same as you,  mediastinal but Right lung. Also radiation and same chemo.  I recently completed #26. Tomm's description of infusion was same for me. Yes labs were done each time before infusion. They watched thyroid. Actual infusion in chair was just about an hour.  Other then pinch for IV I felt nothing. I only saw my oncologist at appointment after CT scans which was every 3 mos. Otherwise I saw nurse practitioner.  
Good luck to you. 
Opal

DFK I did not have a port. It was my onc's decision and I was good with getting a stick every other week. One in the hand for labs then in the arm for infusion. I'm a big sissy for needles too. I'm repeating myself, mostly from joy, but the lack of fatigue is most noticeable and I am so glad it's gone.
I feel pretty much my old self pre Durva, pre diagnosis except for the extra weight. I never had a weight problem so it's a bit annoying. 
Any other questions, ask away I don't mind. 

Hi Grahame,
Same here, had labs drawn every two weeks before the infusion and met with my oncologist every other infusion or once a month.
But before I started Durvalumab (and chemo), my oncologist recommended I have a port surgically placed. I agreed as I have a very low tolerance to pain and needles. I have had no problems with my port over the course of the year. I was also provided with a numbing cream to put on my port before the infusions so I essentially did not feel the needle going in and being removed. They also drew all my labs from my port and if I needed a CAT Scan with contrast, again my port was utilized. I guess it's all a matter of preference if you want a port.  I will have my port removed if my upcoming Scans are clean.
Also, before I started Durvalumab, "someone" had to check if my insurance would cover the infusions and you should know ahead of time if there are any costs that you may incur. Durvalumab is a costly medication that even with insurance , you may or may not have a co-pay. If finances are a concern, they have staff, be it office staff or a Nurse Navigator that can provide you with organizations that may assist with costs. 
I also met with a Nurse Practitioner before I started who instructed me on what kind of drug Durvalumab is, what the goal of Durvalumab is and what side effects the doctor would be monitoring and I needed to report. 
I was never on a regular schedule for Cat Scans but because I had some problems with increasing shortness of breath and vocal chord damage, I did have a total of four Cat Scans over the course of a year. 
This is a lot to absorb in addition to your recent diagnosis as well as your recent completion of chemo and radiation. Take care of yourself first, ask questions of your healthcare team and keep a positive attitude as much as you're able. It's a tough road we're all on but doable when information and support are within reach.
Take Care, DFK
 

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