Sillycat1957

For my fellow Durva Club Members…as promised, my updates:
I received my actual biomarker test report back today. Although I was told last week that I was EML4-ALK+ on the phone, I wanted to read the report for myself.
Yes the written report confirms what I was told over the phone, EML4-ALK Positive. There was also a "NFE2L2 p130F Missense Variant – GOF" listed (Whatever that is I'll have to do some reading on).
There were no EGFR KRAS BRAF ROS1 RET MET or ERBB2 (HER2) variants found.
For those that Inquired: My PD-L1 Expression is Negative.
So the wait is on for my Specialty Drug Insurance Company/Supplier to approve and send me my Alecensa (Alectinib). Wow, a 600mg dose twice a day!  The prescription was sent to them and I am just waiting for approval and receipt. Today I had to meet with the Oncology Nurse Practitioner today for "Targeted Therapy Alectinib Training", but to be honest between here on the forums and elsewhere I didn't learn anything new. But since I had to go in for my blood work (including thyroid panel and TSH) anyway why not listen to the NP for 30 minutes.
Best to all out there. 

Hey I’m lucky I got through 12 infusions before any bad reactions. 
Just a bunch of pleuritis. No PE or blood clot. Nothing new on the CT. painkillers and anti inflammatory until the onc okays the prednisone tomorrow if she wants to. I told the ER doc it’s usually prednisone for this from the immunotherapy. Said he knows my onc and thinks she may not want me to be on it at this point. Which is fine with me. Not in too much pain. Holding off on the opioids-I’ve had crazy reactions to some and unless my pain is a 20 no way. I have a high pain tolerance and rate this as a 4 on a 1-10 scale. My frame of reference is 32 hours in labor-not even close🥴

Good Saturday Everyone,
Wow, what a dazzling amount of exceptional info exchange. Thank you everyone for sharing, for helping me to understand more of this very complicated journey we're on. The minutiae of experiences, details shared and helpful tips in maneuvering procedures, medications, helpful web sites and symptoms gives me hope for a better tomorrow, an educated tomorrow. Thank you, thank you, thank you.
I have also spent some time getting to know some of you who have posted by going to your personal Lungevity websites and reading your introductions. Inspiring to know your personal stories and what you have all gone thru and how you continue to share your stories so newbies like me can learn and hopefully share too.
Michele-Thank you for GO2 You Tube Channel. I have watched a couple of video's and now have them on my radar. You are a wealth of information....thank you again for sharing. Makes me want to be a "Michelle Mutant" too 🥰
RonH-You have a gift of articulating your experiences with knowledge, humor and humility. So yes, please keep us "Durva's” in the loop. I remain perplexed as to the slight difference in standards of care when diagnosed with LC, so as you had mentioned in your previous post, from a patients perspective, thyroid monitoring and biomarkers can and do impact your plan of care and should be done at the start of care unless your medical team has a compelling reason not to do it. Great that you will be discussing with your MD as it may help future patients.
Barb1260- Great on starting Wellbutrin. Smart to know when wearing them big girl panties just doesn't quite do the trick. I too have experienced more leg/toe cramping in the past year than ever before. Not sure whether to chalk it up to getting older, more bike riding or Durvalumab. I never thought I was capable of moving lightning fast but those hamstring or calf cramps makes me bounce out of a dead sleep, out of bed, quicker than I thought was humanly possible. Anyhoo, my labs are normal and fluid intake adequate so I'm riding this one out for now. 
Ladies- Haven't heard too much from our men folk about weight gain....maybe it's a chick thing but I have put on a good 25lbs since starting Durvalumab. Like most of you, I was on the slender side and my weight was unchanged for a good 40 years.....this new me feels clunky and most irritating of all, none of my clothes fit. Small irritant for sure in the big picture but there none the less. This past week was the first time since January, I did not gain a pound or two prior to Durvalumab infusion. Oncologist said my weight has stabilized....REALLY! I don't think so, I have had to cut down on intake and increase my exercise program. I keep looking for fluid retention so I can push for a diuretic but for now, no obvious fluid retention so I'm staying the course with more exercise. Challenging at times when fatigue is my new bff.
Kate7617-You are in my thoughts and prayers.
Take Care all, DFK
 

Hi Ron
You are most welcome!  I’m sorry that you were not tested right from the beginning, however it’s unlikely to have changed the treatment plan as Alectiinib is rarely used in Stage III. 
I was able to obtain Foundation One biomarker testing at no cost after the insurance company issued several denials.  There is a way for patients to be their own advocate and not go bankrupt. 
I’m not sure if you’re using commercial employer insurance, if so then Genentech has a $5 co-pay program.  Their website isn’t easy to use, but you can sign up for email alerts.  The goodie bag will come in the mail a few weeks after the first prescription. 
Please do not rely on Dr Google, the ALK research is moving fast so anything more than six months old is already out of date. A better place is the GO2 Foundation, Lung Cancer Living Room on YouTube.  There aren’t too many ALKs so you’ve got to patiently wait and listen to the whole program. 
As for the side effects, there is a document on the ALKPositive.org highlighting all of them with potential solutions.  
Almost everybody gets stepped down in the first two months due to elevated liver enzymes. Not to worry, this drug is so new that the dosing is one size fits all at the maximum allowable.  Not to worry if a dosing adjustment is needed.  
I don’t do any any social media- please let me know if there are any valuable nuggets. 
I had to meet a number of our “brother & sisters this summer”, they’re awesome.  
So happy continued trails to our Durva cousins! 
Michelle

Hi Ron, being a mutant sucks! I was lucky my testing was done from my Lung biopsy tumor. Not sure if you visit this forum but I belong to this one as well, called Inspire.com there are a lot of communities on there that you can drill down to what you need. I read a lot of info from lung cancer patients like us with all these crazy different types of mutations. Sending prayers your way
Keep fighting the fight, Roseann

Hi fellow Durvals,
Michelle, I have the same weight gain my onc says it's a combo of feeling better after chemo/rad and the Durva like Kleo said! I started 8/12/19 with a weight of 128 I'm 137 as of 9/23/19. I, too, am not a person who puts on weight easily.
Barb, I took Wellbutrin for about a year takes a couple of weeks to feel a difference, about a good 4-6 weeks to reap the benefits good med. I had to stop it did aggravate my epilepsy. I have the same issue with my feet, although not now it's my toes and pain in the balls of my feet ugh! I take a 5mg steroid daily which helped with my other side effects so far. I see my oncologist tomorrow, and go for my 4th infusion on Monday if all my labs are good. I just have slight chest and stomach pain now? I had to skip one treatment because of nasty side effects
I never got this Goody bag! I think Robert Macaulay got one because he was the first person in his area to get Durvalumab! All I got were side effects! LOL!!!
Keep fighting the fight!
Roseann
 

Hi Michelle,
Thanks…yes in my readings on ALK+ Mutations, I ran across your name many times, read most of your posts and saw that you were ALK+ and on Alectinib. Michelle after reading all of your posts, I was going to nominate you as the "Queen of the ALK+ Mutants".
I spent most of Thursday evening and part of the night reading all about ALK+ mutations and the treatments. Since I had had my EBUS Biopsy Thursday morning I had a nice nap that morning curtesy of the Versed and Fentanyl. Even after I got home, I slept all afternoon so as a result I had plenty of time overnight laying awake to do my reading along with the aid of Dr. Google. I can’t wait to get started, but of course my prescription drug insurance company requires a “coverage review” before approving. Thanks also for the names and links to the various support and information groups. I have been to most and put my application in for the Alkpositive.org as well as their associated Facebook page. I plan to watch a few YouTube videos over the weekend on the subject matter. I am pleased to hear of your excellent results with Alectinib. I do kind of dread the weight gain side effect as I’m one of those people that even gained weight during the chemo and radiation treatments, and then again while on the Durvalumab. Just what I need, another aid in gaining weight! Also I am a little concerned with the effect on the liver enzymes, it was one of the first things that the Durvalumab hit me with and caused me to be temporarily taken off it for 5 weeks last year.
The results of my EBUS biopsy yesterday surprised the Radiologist, the Med Onc, the Rad Onc as well as the Pulmonologist who performed the procedure with it coming back as malignant. With the small indication size and PET scan uptake SUV barely detectable above the background on that lymph node, all had said that thought it would be found to be benign. Of course it wasn’t, so initially I was a disappointed that I would no longer be considered for SBRT of the recurrent tumor in my lung. Fortunately my biomarker test had came back the day before and my Med Onc sounded pleased with it and also said that it was actually good news and he specifically stated that he would have me started on Alectinib. I of course did a quick internet study on it and it does sound quite promising. As I understand it, it is a 2nd generation TKI. Even the Pulmonologist said the same thing, that it should be considered a good biomarker test result. Although maybe not a cure but it at least provides a good likelihood of reasonable extension of time before further Mets, especially to the brain. Some days I can barely function with what little grey matter that God gave me to begin with, so I can’t afford to lose any brain cells! Like you say, it may likely be best to save the SRBT till later if and when I might need it. (Although quite frankly I was looking forward to frying that b*stard malignant lung tumor with radiation just to get even with it for returning!)
To those out there that their Onc has not had biomarker testing done, if I was you I’d nudge the Onc to do so. I know that in my case they needed both a tissue sample (from a biopsy) as well as a blood sample to do the testing. Since I was having a biopsy anyway due to the probable recurrence, the Onc felt it was finally time to have the biomarker test. While I have not compared the various biomarker companies that perform these tests, my Onc used the Tempus xT test kit. There is a quick online form to fill out, and for most insurances it is “out-of-network”, however Tempus apparently will normally approve a $100.00 maximum out of pocket cost to the patients no matter what the insurance company pays or does not pay. For $100 I would have done this long ago and personally feel that it should be done with the very first biopsy confirming a cancer diagnosis. Perhaps the Tempus xT is not the most comprehensive biomarker test out there, but at such a low cost, some info is better than none at all. This is especially true for us ALK+ mutants (approximately 4% of all NSCLC cases) as it was already known that the various immunotherapy meds do not seem to work on us. I do understand that it is all part of playing the percentages, and the doctors go step by step following their normal treatment protocols that fit the majority of their patients, but I wish I hadn’t spent 10 months thinking that the Durvalumab was likely working for me when in reality, it probably wasn’t. I do believe that I have a very good Med Onc and have no regrets selecting him, but I will be suggesting to him (from a patients point of view) that he start the TSH thyroid testing as soon as starting patients on immunotherapy, as well as when his patients have a biopsy done to confirm cancer, and if it is confirmed, that they go ahead and send that sample out for biomarker testing at the very beginning, even before any chemo and/or radiation. Knowledge is Power!
Anyway, I want to thank all the Durvalumab club members for their support, prayers and well wishes. I’ll be sticking around here and updating from time to time, but I will now also be spending time with "Michelles Mutants".😉 Best wishes to all.
-Ron

They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 

Hi Ron, being a mutant sucks! I was lucky my testing was done from my Lung biopsy tumor. Not sure if you visit this forum but I belong to this one as well, called Inspire.com there are a lot of communities on there that you can drill down to what you need. I read a lot of info from lung cancer patients like us with all these crazy different types of mutations. Sending prayers your way
Keep fighting the fight, Roseann

Hi fellow Durvals,
Michelle, I have the same weight gain my onc says it's a combo of feeling better after chemo/rad and the Durva like Kleo said! I started 8/12/19 with a weight of 128 I'm 137 as of 9/23/19. I, too, am not a person who puts on weight easily.
Barb, I took Wellbutrin for about a year takes a couple of weeks to feel a difference, about a good 4-6 weeks to reap the benefits good med. I had to stop it did aggravate my epilepsy. I have the same issue with my feet, although not now it's my toes and pain in the balls of my feet ugh! I take a 5mg steroid daily which helped with my other side effects so far. I see my oncologist tomorrow, and go for my 4th infusion on Monday if all my labs are good. I just have slight chest and stomach pain now? I had to skip one treatment because of nasty side effects
I never got this Goody bag! I think Robert Macaulay got one because he was the first person in his area to get Durvalumab! All I got were side effects! LOL!!!
Keep fighting the fight!
Roseann
 

Ros,
CyberKnife on multiple locations, I’m not sure. I can’t think of a reason it couldn’t. There are easier stereotactic types like image guided radiation therapy IGRT. 
My CyberKnife started with a thorasic surgeon implanting 5 very small gold targets (called fiducals) to allow radiation device to track the target tumor while I breathed.  So if fiducals are needed, that might limit treating multiple sites. 
Radiation oncologists are getting very aggressive treating multiple tumors with precision radiation. I’ve heard terms like “spot welding tumors” or “scarring down tumors” at conferences. 
Stay the course. 
Tom

Thanks Tom, I knew you would answer that.    
Told the onc about my feet cramping up for a full day after the last treatment, she said she hadn’t heard that one before. She confirmed what I had been saying all along-this stuff is still so new, they are still learning about it. So we are still blazing this trail fellow Durvas!😎

Ron....I think the docs get a little excited when they find a mutation. It gives them something to target!
Still reminds me of Professor X and his XMen though.😄 I personally have NO mutations. Nada. Not even a speck of PDL1. They don't know what to do with me!😏
What a tough call though....radiation or targeted therapy. I am like Tom with the radiation...big fan. I did the 5 day treatment and will say it definitely kicked my butt... so much more than the 30 day first treatment I had. But they were also aiming at the lung cancer- in my brain...I'm sure it's totally different!
Barb & Michelle....I actually gained a few pounds while on the Durva. And I'm not a weight gainer...I'm a twig. So I really don't know if the Durva was the culprit or just the steroids they had me on. Both maybe!
 
 

Barb,
Is CyberKnife SBRT? Yes. SBRT stands for stereotactic body radiation therapy and one form of that therapy is CyberKnife. There are others but they all do the same thing: precisely zap tumors. 
I'm a fan. Likely CyberKnife saved my life almost 16 years ago.
Stay the course.
Tom

Good Tuesday to Everyone,
#19 blessed uneventful infusion. All labs remain within normal parameters. 
Side effects at this point:
Itchies remain though localized to radiation area on back
Chest area pain front and back...some muscle, some nerve. Alleviated with less activity and Motrin as needed
Fatigue comes and goes, I just go with the flow.
EGD today-Esophagus perfectly normal, ENT appt. next month to check my vocal chords. Voice still a little hoarse and squeaky.
Kate7617-I am praying that you find your way and make a decision that sits well with you. 
Kleo-Read your postings.....you're fierce; very admirable. Congrats on progress so far with your many unexpected detours.
Take Care Everyone, DFK

Rower Michele-Thank you for biomarkers 101 and resource info. Informative, yet you made it very understandable. Somewhere in my arsenal of literature I have the 2019 NCCN (National Comprehensive Cancer Network) Guidelines and treatment algorithms for all biomarkers and for those with no biomarkers. If any one is interested I can find it and post. I refer to the NCCN as my Cancer Center uses their guidelines for care. Website is NNCN.org. 
Kate7617-Three to four months post CRT, I developed shortness of breath and lowering pulmonary function scores. Bottom line, diagnosis pneumonitis where my original tumor had been. Oncologist felt cause was radiation, Radiologist felt it was the Durvalumab. I was taken off Durvalumab (doses #8 and #9 held) for a month and placed on high dose Prednisone. My shortness of breath was immediately alleviated with Prednisone and four months after that episode, my pulmonary function tests are nearly pre chemo and radiation normal. Been very fortunate to dodge any other pulmonary problems. I'm coming up on #19 Durvalumab tomorrow and plan remains to receive all 26 doses.
Thank you everyone for informative posts and support.
Take Care, DFK
 

Sorry the link didn't work, but Michelle pretty much explains it in an earlier post. I read it on Inspire.com It was posted in the immunotherapy community I think, went back to find it and I couldn't. However, I certainly shut my mind down, for quite some time, did some walking, a little gardening, listened to some much needed music to soothe my soul I'm okay for today. Hope you are as well 😊 I missed SNL, Roseann

Hi Barb!
Right now they only have me doing the 2 immunos...Tecentriq and Avastin every 3 weeks. Just had my 5th dose I think? They only did 2 Taxol chemos with immuno and then stopped the chemos as it was too much for me at once! Bleh.
My last MRI showed all the small tumors were gone. (I think that's thanks to radiation!) They removed the one that was causing me pain. And the one I have left had shrunk. So....fingers crossed that last one goes away or shrinkie dinks too! If not...surgeon said he can get it. But...ewwwww. I don't like brain surgery. 😣
I think Tecentriq is a lot like the Durva. It's a PDL1 inhibitor. I don't have PDL1 but doc seems to think it'll still work. I asked why give me the same kind of drug and she said they target the same thing but use different pathways. And she thinks it'll boost the Avastin. 
 
Bob....good it can't find your brain!  Keep that thing hidden! 😎 Sounds like they are already planning to zap it. 

Hello everyone that is getting IV durvalumab, after CRT, is any one coming up with lung inflammation, OGC, that the Dr won't treat? I have had 5 infusions with durvalumab, and I am getting very bad side effects, sharp pain in my right lung in back, radiating around to my front chest. was treated with Leviquin 500 mgs 7 days. My recent CT scan shows that there is still inflammation but Doc says my results are good. Huh, I will never understand conflicting jargon. Oh Well on to the Doc today, and see what happens. PS The CT was on Sept 17th, and as of today I do feel like I am breathing with less difficulty. Thanks to all of you! And you are all in my thoughts and prayers.

Hi Rosann & DFK
I have the ALK driver mutation and maybe I can she some light from mutant land pertaining biomarkers, TKI & Immunotherapy
The “standard biomarker panel” consists of EGFR, ALK, ROS1 & a PDL-1 percentage. There’s quite a controversy as to when the standard panel is done if the cancer is Stage III or above where the goal of treatment is with curative intent  
Payment for biomarker testing is Sometimes driven by the health insurance medical necessity guidelines to only pay  at Stage IV.  In an ideal world everyone with adenocarcinoma should be tested for a driver mutation  but it’s expensive (close to $6k).  
The “standard panel” is considered insufficient for treatment planning purposes since there are many other driver mutations. The gold standard is called (get ready) comprehensive biomarker, a full panel, molecular testing, next generation sequencing, or oncogene testing  (whew).  All means the same thing.   While there are a few companies in the US who perform this analysis, most physicians use Foundation One in Boston.
Another reason for comprehensive testing is greater sensitivity, there are two ALK tests. The standard panel can turn up indeterminate.  It’s important to know which ALK test was completed. 
TKI are inhibitors in pill form used to put the brakes on a mutation. Durva and Keytruda are classified as a immunotherapy which is a “targeted “therapy for those with a high PDL-1 percentage.  In other words there are two types of targeted therapies: TKIs and Immunotherapy. 
TKIs and Immunotherapy in some cases do not mix (pneumonitis).  This is true for the ALK inhibitors.    “Mutants” don’t respond to Immunotherapy even if there is a high PDL-1 (no one knows why).  I don’t think this is anything you have to worry about now.
All this stuff is very complicated, research is emerging so quickly anything more than six months old is already out of date.  Dr Google is not our friend.   
A great resource is the Lung Cancer Living Room on YouTube by the GO2 Foundation. Last week the key presentation was on Immunotherapy.  Even though it’s two hours you might find it to be worth your time.
Hope this helps to clarify some.
Keep up the fight!
Michelle
 
 
 
 
 

https://www.medscape.com/viewarticle
Here is an interesting read on Tyrosine Kinase Inhibitor (TKI) I hope the link works. I was following a thread in another forum and someone had mentioned that if our Immunotherapy fails we should be careful when we start TKI therapy due to potential severe adverse yikes! Any thoughts on this? Ugh! I think I'll take my Xanax and try to go to sleep. I think I let Cancer win today 😱 Tomorrow will be better
Goodnight all Roseann

Hi DFK,
Hope all is well, thanks for that info. My testing was done from a lung biopsy. I also had a lymph node light up on my PET/CT scan so maybe that prompts them to check for more mutations? Just a scratching my head and wondering kind of thought. Makes sense to me. But good grief I'm no doctor! Thank goodness I'm not driving that bus 🤣
And yes DFK, my report says Keytruda for first or second line treatment. If Dr Google and I understand correctly, Keytruda is a TKI, which I haven't even had yet. That's something in my pocket in case the Durvalumab doesn't do what my Oncologist and myself and the help of my good Lord wants it to do for my nasty lil tumor who I call George, I will move on to Keytruda.
My other markers are: BRAF Mutation=Neg,  ALK Gene=Neg,  ROS 1 Gene=Neg, EGFR =NEG, PDL1 90% High Expression
KRAS extended snapshot results: Positive A KRAS mutation was detected in Exon 2, Codon 12
So now, that I know, what I still am not sure, what I know 😜 I will continue to fight the fight! With my eyes as wide open has I can, and just keep praying for Gods will in my life. Because He can, I can't, and I'm gonna let Him!
Sending Prayers and restful sleep to all my fellow Durva infusers!
Take care Roseann
 
 

Hello everyone,😩
I have a question, I tested KRAS positive which according to my pathology report only 25% of people have this gene, so we must be special! Anyway I was curious if anyone here getting Durvalumab, with that particular mutation, has finished the 26 infusions progression free? Because from what I understand on my report there are not many treatment options, it lists Keytruda as my next option? Earlier Pre Durva I asked my Oncologist about Bio Markers and she told me not to worry ugh! My next appointment is 10/4 and I just want to know is this stuff gonna work? My PD-L-1 is 90% I don't want to risk scrambled eggs for inside, BTW the 5mg steroids seem to be helping a bit with my issues from last infusion Yay!
 Fighting the Fight 😸 Roseann

Thank you DFK 😎 I sure do try