Rower Michelle

Thank you so much to Eagle 13 and to DFK, inspiring and uplifting messages, needless to say! I believe I had a bio marker EFGR and it is no, if there be any others I am all ears! And thank you Eagle 13! Hey its hard enough to be diagnosed with stage 3b lung cancer, then to have Doctors that tell you....We aren't expecting a miracle, and looks like you have one or two years to live was really the worse thing a Dr could possibly say! Well I am a firey red head ( back in day) lol and now I got my Irish up again, and with God willing we will show those former Drs Just what I am made of! I'm not going to worry, worry is useless, and I continue to be grateful for each day! You are all  in my prayers and with all the prayers coming around I can't lose! Thank you again, and I will let you all know what happens with PET SCAN when I know! Kate7617 

Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know.
Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain  hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus".
Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. 
By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know.
Take Care, Blessing, DFK
 

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! 🙏🏻
 
🦅

Hi all. #21 done Thursday. Blood work ok. Just a little tired so made myself be lazy all weekend. Don’t know what it’s going to be like mentally after this is done. 

#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

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

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

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

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

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

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

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

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

Wow, you must have been really relieved to hear this news!  You made the smart call to enlist the experts from day one, along with your Wonder Woman attitude it all played a part!  That’s awesome.  I hope you have a fabulous trip, if you are able, Moonstone Beach in Cambia California is worth a restorative visit, it was one of our favorite places (near the Hurst Castle). Carry on! 
Michelle 

DKF
really happy to read your success and joining the NED club. It's nice of you to let others know that PDL-1 is not required to get NED. When you come to Oregon if you find yourself and husband in Eugene there is this https://www.eugenesaturdaymarket.org/ ..the longest running saturday market in the USA. 
Two Hippies are walking down a railroad track stoned..
One Hippie says "This is a really a long staircase!"
The other Hippie says "I don't mind the stairs, it's this low  handrail that's killing me."

Hello- welcome to your new family.  I’m one of those Stage IV healthy people.  It’s more common than any of us could have ever imagined.   You might want to check out Diana Lindsay’s “Something more than Hope”.  She shares her survival story as an EGFR mutant which is so inspiring.  Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message.   It’s so on point!   The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment  
Another terrific resource is Anti-Cancer Living.  Lots of great information in there too.  
In addition, Facebook has some great support for EGFR & the Exon 20.   
Knowledge is power & hope is the driver on this road.  There’s so much hope on the horizon with all these clinical trials.  Stay strong.  We’re here for you! 
Michelle 

Went for a walk with dogs late afternoon after infusion this morning. Definite muscle ache and more tired than usual with this level of effort. See what tomorrow brings!!
grahame

Good Thursday Morning to Tomm (#22) and Barb (#20),
The countdown is on. Wishing you both uneventful infusions today. 
 
Barb, sorry to here about thrush issues from inhalers. What is MD giving you for your Thrush? I am taking Trellegy, a steroid inhaler and yes, I'm suppose to rinse my mouth after using. I will try to be more consistent. 
 
I feel like part of the Lungevity side line cheering squad holding that paper cup of water.....wishing you both uneventful finish line crossings. 
 
Recap, got the root canal for abscessed tooth behind me, and the head cold with infected sinuses with piercing ear aches behind me, then finally am looking at the flu in the rear view mirror though residual annoying cough persists.... but I am determined to finish my PETSCAN tomorrow. Results to be discussed on the 20th with Radiologist and Oncologist. But hey surprise surprise, my dentist was concerned that my tooth decayed so fast since my last x-rays were done in December and I had no dental issues.....so he had another good look at all my teeth. Well, well, well, I have another tooth abscess and this tooth may not be salvageable.....I find out Saturday after excavation if it’s s a root canal or extraction. One of my wisdom teeth. Dentist said pretty common for radiation and chemo to affect bone loss, gum recession and promote tooth decay. I was beyond upset, had my melt down and made all the appointments that need to be made. It's been a rough month but I am taking care of business and it's all okay. 
Take care everyone, DFK
 
 

Thank you Bridget for your kind and encouraging words. It's no fun being sick that's for sure and I'm usually not one that gets TKO'd, both physically and emotionally at the same time. This flu sure as heck took me by surprise and really mopped the floor with me. But I am on the mend and feel tons better than I did a few days ago. 
Take care all, thank you so much for your support and caring, DFK

 

Hi DFK-
The flu bites big ones.  I wouldn’t beat yourself up about it though. One of my LiveStrong LC ladies got the flu shot and she just dropped out because she got the flu anyway.  

I had an interesting meeting with my social worker recently, similar to your “why now” depression.  Her insight was we fight so hard to live “normal” lives with a big diagnosis that something pre diagnosis which normally wouldn’t have have caused us to pause becomes an uncharacteristic set back.  Another entirely unwelcome reminder that our bodies aren’t the same anymore. Take care of your mind as well as your body. Scanxiety stinks.  
A lot can happen in the next seven days to improve before the PET scan.  Prayers for you! 
Michelle

Flu sucks. Yep, get the flu shot. if you get the flu anyway after the shot, it will  be less severe, or that's the theory anyway, And the flu is depressing.  Your husband is right--at least partly- you will be better. I think there can also be an end-of-treatment depression effect. Kind of like post partum depression but no baby. We get focused on getting through treatment and it keeps the mind and body occupied. We have these frequent appointments, scans, tests etc, and then it all stops and now what? We can feel like we've been cut off or set adrift to deal with the new normal. It can be disorienting.  If it's affecting you, it will get better, too. In the meantime, feel free to come on this forum to complain, vent, grouse or whatever you need to do. We get it. It's OK.

Hi Durva Club! 
Just want to give a heads up there’s a newbie over in the Intro section, Polly, recently diagnosed with Stage IIIb NSCLC about to start immunotherapy.  She sounds like she can really use a hug.  Can you guys take a minute to send a little welcome?  
 
Hoping all is well with this gang, it’s been a quiet week!  
Michelle 

DKF   .. when you look for a  naturopathic physician look for one that is a naturopathic oncologist, that's the FABNO part and there are only about 115 in the country. Mine is cash when I see her but free to email question. The real expense are the supplements that you will need for your care plan. I take 15 different ones like curcumin, fish oil, vit d and more. Hope you feel better soon..
nice jokes..
Don’t interrupt someone working intently on a puzzle. Chances are, you’ll hear some crosswords.

Michelle, you are a dear and on top of your game. With your recommendations and Tomm's links, I should be in pretty good shape to find myself a Naturopathic doctor or an Integrative MD. 
Thank you for being so kind and generous.
Take Care, DFK
Tomm, Did you hear about the Origami factory? It folded.....