DFK

#23 done last thrusday, blood work in normal range.. just some fatigue on the day.
Barb ... how was your #22? Hope your doing well.
Money talks. But all mine ever says is goodbye

Good luck!

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
 

Michelle – I had remembered that you were also ALK+ but that you don’t do FB. I do routinely read the 5 to 10 posts a day on the ALK Positive “private” Facebook page that has almost 2000 members. It is quite an active page and very “international”. It’s very informative, sometimes to a point well above any possible comprehension by a non-medical person such as myself, but it is interesting to hear about what the various standards of care are in other parts of the world. Just in the past few days there have been posts from people in Russia, Sweden, Malaysia, UK…and the list goes on and on. The Admins of the FB page are quite knowledgeable regarding ALK+ NSCLC and several have direct contact with the countries top Oncologists and Researchers.  Since you mentioned the ALK Summit in Denver this summer, yes I am considering going. I would certainly like to hear what Doctors such as Lin, Lovly, Camidge and Shaw have to say on current research. There is also talk about having discussions on ST and LT disability as well as Medicare, etc.
Yea I kind of figured that the Insurance company that handles my employers LT Disability Program would be difficult to deal with and that I would see strange cars parked outside from time to time. Plus part my company's program is that you also have to apply for Social Security Disability at the same time, and appeal it if denied, and then they deduct what ever you get from Social Security from what the Insurance company pays out. It all sounded like a big hassle.
I was planning a road trip out to El Paso anyways to visit an elderly cousin this year, and although Denver is not quite in the same neighborhood (but it is in the general region), I may just add a week onto my trip and attend the Summit first and then spend a few days in the Rockies as well as stop by Pikes Peak on my way south to El Paso from Denver. I’ll probably make my decision on how my health as well as my CT results are in March and then again in early June, but at the moment chances are good that I’ll be there. 
Sorry to the Durva group for this off topic posting!
Later - Ron

Georgia, thank you for showing you care by messaging me, truly appreciate you doing that! I made an appointment for this Wednesday to speak to my new onc regarding clinical trials and hoping for good news. thanks again, and I will keep you posted. Enjoy your day!

Kate,
I'm a "newbie" so keep that in mind, lol.  I read most of the postings re Durvalumab and did see one that had a resource to find a clinical trial. This may be 2nd guessing your onc but I don't believe any one doc can know about everything either.  Since you mentioned clinical trials, on this site, I found clinical trial resources Including a Clinical Trial Navigator if you want to pursue that. The link is below.
https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials
My husband has stage 3B lung cancer, had chemo/radiation last year and has Durvalumab now #11 so far. Has had some side effects but progress is good so far. We want to be optimistic.
Everyone here has been so helpful to us, I just wanted to chime in.  Please keep posting your updates - we care and want to help if possible
Georgia

Barb and Tomm- Great on continued uneventful infusions.....so close to the finish line.
Life after Durvalumab-My observations after 6 weeks
1) Significant lessening of joint aches and pain. Chest muscle pain non existent. Was taking Motrin 800mg alternating with ES Tylenol daily for comfort, have not taken any analgesics in weeks. This is huge!
2) Weight stable and unchanged whereas during infusions I gained a pound every two weeks.

3) I'm not a bundle of energy but I can meet my daily responsibilities without crippling shortness of breath or fatigue and needing rest breaks. Not having to plan and be absent for every two week infusions is pretty sweet. I am enjoying my respite.
4) My heart continues to go from 75 beats per minute to 120 taking our stairs.....just 13 of them. I suppose to meet my respiratory needs, it is what it is. Saturation steady at 98-99%. After my 8 mile bike ride, I'm taching away in the 140’s, with my Saturation at 96%.....still within my target parameters. This has not changed at all since completing Durvalumab.
Take Care, Blessings, DFK

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

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

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

DFK
thank you for your very kind words
no treatment now 
I asked for clinical trials, nothing being offered so needless to say I sit on the edge of my seat everyday. Not sure of anything, however Who is? I’m going to talk to new onco this week local papers are showing promising hopes about clinical trials. I don’t understand why nothing but every 3 months have PET SCAN. I don’t know???? Wishing you all the best DFK I’m so happy you made NED! Stay close, we need your optimism! Kate

TJM ... your are incorrect , Eugene is the best PAC 12 football team and town with the best Green and yellow,  we won the Rose Bowl this year.  Go Ducks!!
"Worrying works! More than 90 percent of the things I worry about never happen."
 

DFK. Go Breavs! (Not sure if that is the school). If it is OSU and you haven't walked the campus in years I highly recommend that you take a stroll. Nicest campus in the Pac 12. Corvallis is the best town in the Pac 12.
Avoid Eugene at all cost and NEVER wear green and yellow... 😎

Great news!!!!!!!!!! I do have a couple questions.
My onco told me the tumor will never be gone it is now scar tissue which they hope doesn't contain any cancer. Yours is gone?
Did your onco say that perhaps the chemoradition did the job? When i ask mine about my good response so far she says we don't know if it's the immuno or chemoradiation.
I'm almost a year since treatment started and the last CT said "stable". 9 more Durvalumab treatments, have stopped twice for various problems. 
I don't post much but reading everyone's journey is very helpful. Joe.  

Hey Ron-
Good to hear from you.  I know you’re probably active on the ALK FB Page, I’m the lurker with ALK here.  Just a thought on the disability/retirement. I filed for disability and didn’t regret it. I received a list of key phrases from a disability attorney for my doctor to document in my medical record.  Wasn’t a fun process and the private employer sponsored disability insurance company did send at least two private investigators to keep an eye on the house (ugh).  
Social Security was a piece of cake in comparison. 
Alectinib kills my energy too while the scale increases 1 1/4 Lbs per month.  As Bob says Que Sera Sera.   Hope to see you in Denver this summer.  
Michelle

I (Georgia) read the following posted by Eagle 13 on 12-9-18, but don't know if any of it would be helpful;
I (Eagle 13) was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion.  I am now Stage 4.  Biomarker testing was done on the fluid that was pulled.
I sought a second opinion with the agreement of my Onc.  My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid.  Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy.  The targeted therapy is 1 pill I take once a day, every day at the same time.  The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso.   I am a non-smoker.  EGFR is typical for non-smokers who get  non small cell lung cancer.
Here is the explanation of the biomarkers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137804/

Kate7617 ..
sorry to hear you are having side effects, this is the 1st I have heard that durva caused basel skin cancer. This info. may be of use to you https://hemppedia.org/cbd-oil-skin-cancer/
From reading this forum I've notice that most side effects happen around infusion 5-7 and then our bodies start adjust . Fatigue is almost always an issue. My guess is your about to feel better. Your  Onc  gives you Durva with curative intent and you can see people becoming NED from getting it. Some good news is that we get Durva, only released to the public 2 years ago and before that all they could do was wait and watch for cancer to return..  we are very lucky to get this. The  past if over, the future isn't here... be here now. Best of luck on your journey, you are not alone.
A pun, a play on words and a limerick walk into a bar.
No joke
 

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

DKF,
Congratulations - what good news, so happy for you.  Thanks also for sharing all the details - it is so helpful for me to pass on to my husband - had #11 recently and most side effects seem to have resolved for the time being.  I have learned so much on this forum and appreciate everyone's comments and experience so much.
Again, yea !
 
Georgia

Wow!!! Great news NED is the best news ever! I have changed onco and I am very happy, although I still have a lot of side effects from 5 infusions of Durva, I have Hashimotos thyroidists, and my skin is finally doing so much better! after the 5 infusions all I did was go from one Doc to another first a cardiologist, then thyroid doc, dermatology doc, had basel skin cancer all caused from the Durva, I asked to stop the treatment before I got to 5 but the Dr kept pushing me to continue, it was a terrible experience, and I am still suffering anxiety from it, although I am positive we all have experienced anxiety from the cancer itself. I wish that I was able to tolerate the Durva, with a PDL 1 Neg it seemed fruitless to me. I am so happy that DFK is now NED, that is wonderful news, congratulations! I asked if there be an alternative to Durva, and was told, "not in this setting" needless to say my former onco was not the best at giving bad news. Well onward I go, March 9th I get another PET/scan and follow up with new onco please pray for me, it is very scary not having much support here from home, and I appreciate all the good news everyone has to offer. Kate 

Happy Sunday to all,
Joe-Good to hear from you. Is my tumor gone? I suppose, since a PETSCAN measures uptake, then in that sense my tumor is "gone" since there is no SUV reading. I was also told by my Pulmonologist that I will have scar tissue where my tumor was. Now, on my CatScans, over the course of a year, you can definitely see the large tumor at diagnosis and subsequent scans show a smaller and smaller mass until the last cat scan showed no mass at all. So again, my tumor is "gone". I have a high probability of developing pneumonitis and/or pulmonary fibrosis where I was radiated. Pulmonary function tests will show how effective my lungs are functioning and how much pathology has taken place because of the radiation. I did develop Pneumonitis 4 months post chemo/radiation or 3 months into Durvalumab. This was treated by one month of high dose Prednisone and one month OFF of the Durvalumab. I included the little "blurb" of 3 years after diagnosis, if you are still in remission, it is probably due to the immunotherapy's success in training my lymphocytes to recognize and kill my cancer cells. My oncologist was very adamant in saying it is much to early to tell if my NED or remission is due to immunotherapy. My oncologist, when questioned about the efficacy of chemo/radiation never fails to tell me how I always have cancer cells circulating in my body, and how conditions have to be right for a tumor to start. Then he throws in the Carl Sagan billions and billions of cells are needed to make up a tumor. Lovely!  I started my Durvalumab treatments January 2019 and completed 26 doses January 2020. Though catscans throughout my treatment always showed my tumor decreasing in size, this PETSCAN done one month after my last Durvalumab confirmed my tumor is "gone". Surveillance scans in the future will be where the rubber meets the road.
Opal-Thank you for your kind and encouraging words. I am disheartened to hear of the challenges you have been experiencing caring for your husband. Please know that you and your husband will be in my daily prayers. I wish for you a clean scan and for your hubby, a resolution to his pain and forward movement to his chemo.
Kate-You are a survivor and I love that you are still swinging at bat despite your many challenges. Taking off the brakes on your immune system does wreck havoc on your body, no question. Your adverse response started early on which was very disconcerting for sure.  Good luck on your PETScan coming up in a few weeks. Not tolerating the Durvalumab has put you without any treatment? I'd be interested to know, after all this doctor hopping and smoothing out the wrinkles that Durvalumab brought on, what, if any treatment will your new oncologist recommend? 
Ron-Thank you for such a detailed and heartfelt update. My sense of it all is that you're hanging tough, taking the hits, making adjustments and carrying on. Admirable. Very good point you make about Durvalumab having an end point and is given with a curative intent whereas your TKI is a maintenance drug that has no end point unless it fails.  That’s a lot to wrap your head around. It never ceases to amaze me how much, as cancer patients, we are asked to shoulder, and adjust...again and again and again. Resiliency prevails and I suppose that is a good thing for us. The decision to retire is a tough one.....I wish you an easy road in making that a reality should you want that route.
Georgia-Did your husbands skin sensitivity resolve? 
Tomm- Thank you for the link and recommendation for Saturday Market in Eugene.....sounds like a fun place to hang. I especially love the artwork that comes out of "Oregon". I went to school in Corvallis and frequently visit a gal pal in Portland. Love the Pacific Northwest area and we are looking at trains, planes and automobiles for upcoming vacay.

I was having a bad day so I bought a bottle of vodka, gin and whisky and put them in an elevator and sent them to the top floor. I didn’t have a good reason. I just needed something to lift my spirits.
Take Care All and I ditto Ron....very well wishes to all as we navigate....... DFK

Happy Sunday to all,
Joe-Good to hear from you. Is my tumor gone? I suppose, since a PETSCAN measures uptake, then in that sense my tumor is "gone" since there is no SUV reading. I was also told by my Pulmonologist that I will have scar tissue where my tumor was. Now, on my CatScans, over the course of a year, you can definitely see the large tumor at diagnosis and subsequent scans show a smaller and smaller mass until the last cat scan showed no mass at all. So again, my tumor is "gone". I have a high probability of developing pneumonitis and/or pulmonary fibrosis where I was radiated. Pulmonary function tests will show how effective my lungs are functioning and how much pathology has taken place because of the radiation. I did develop Pneumonitis 4 months post chemo/radiation or 3 months into Durvalumab. This was treated by one month of high dose Prednisone and one month OFF of the Durvalumab. I included the little "blurb" of 3 years after diagnosis, if you are still in remission, it is probably due to the immunotherapy's success in training my lymphocytes to recognize and kill my cancer cells. My oncologist was very adamant in saying it is much to early to tell if my NED or remission is due to immunotherapy. My oncologist, when questioned about the efficacy of chemo/radiation never fails to tell me how I always have cancer cells circulating in my body, and how conditions have to be right for a tumor to start. Then he throws in the Carl Sagan billions and billions of cells are needed to make up a tumor. Lovely!  I started my Durvalumab treatments January 2019 and completed 26 doses January 2020. Though catscans throughout my treatment always showed my tumor decreasing in size, this PETSCAN done one month after my last Durvalumab confirmed my tumor is "gone". Surveillance scans in the future will be where the rubber meets the road.
Opal-Thank you for your kind and encouraging words. I am disheartened to hear of the challenges you have been experiencing caring for your husband. Please know that you and your husband will be in my daily prayers. I wish for you a clean scan and for your hubby, a resolution to his pain and forward movement to his chemo.
Kate-You are a survivor and I love that you are still swinging at bat despite your many challenges. Taking off the brakes on your immune system does wreck havoc on your body, no question. Your adverse response started early on which was very disconcerting for sure.  Good luck on your PETScan coming up in a few weeks. Not tolerating the Durvalumab has put you without any treatment? I'd be interested to know, after all this doctor hopping and smoothing out the wrinkles that Durvalumab brought on, what, if any treatment will your new oncologist recommend? 
Ron-Thank you for such a detailed and heartfelt update. My sense of it all is that you're hanging tough, taking the hits, making adjustments and carrying on. Admirable. Very good point you make about Durvalumab having an end point and is given with a curative intent whereas your TKI is a maintenance drug that has no end point unless it fails.  That’s a lot to wrap your head around. It never ceases to amaze me how much, as cancer patients, we are asked to shoulder, and adjust...again and again and again. Resiliency prevails and I suppose that is a good thing for us. The decision to retire is a tough one.....I wish you an easy road in making that a reality should you want that route.
Georgia-Did your husbands skin sensitivity resolve? 
Tomm- Thank you for the link and recommendation for Saturday Market in Eugene.....sounds like a fun place to hang. I especially love the artwork that comes out of "Oregon". I went to school in Corvallis and frequently visit a gal pal in Portland. Love the Pacific Northwest area and we are looking at trains, planes and automobiles for upcoming vacay.

I was having a bad day so I bought a bottle of vodka, gin and whisky and put them in an elevator and sent them to the top floor. I didn’t have a good reason. I just needed something to lift my spirits.
Take Care All and I ditto Ron....very well wishes to all as we navigate....... DFK

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

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!!