Durvalumab

[DFK]

Roseann-I loved getting to know you via your writings. You have spunk, humor and spirit, thank you for sharing. I stopped smoking cold turkey after 50 years....it was hard but I was determined...Six months later I get my Stg 3A diagnosis.....talk about a WTF moment. I remember telling my doctor that dealing with the anxiety of my diagnosis was really hard without my trusty crutch...the cigaret. Oh well, seems like that was lifetimes ago. Sounds like you have been able to find a happy medium and balance with your support "drugs" to continue with your Durvalumab while quieting your other medical challenges....always a balancing act, but you're pulling it off.

RonH-Yeah, couple steps and time now added to the start of your treatment but I think, it's a smart move to get the EBUS and cover your bases thoroughly before going forward. You're in my prayers....hang tough🙏🏻

Take care everyone, Blessings to all, Gratitude for today

DFK

[Sillycat1957]

Thank you DFK 😎 I sure do try

[Sillycat1957]

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

[DFK]

Roseann-Great on 5mg for pre treatment Durvalumab to calm the savage beast. No KRA’s for me. Wouldn't Keytruda be listed as your next option because of your high PD-L1 expression? 

Here is profile from my EBUS:

EGRF Mutation-Not Detected

EGRF Exon 18- Not Detected

EGRF Exon 19-Not Detected

EGRF Exon 20-Not Detected

EGRF Exon 21-Not Detected

EGRF T790M- No evidence of mutation

Not a candidate for TKI’s.

PD-L1 22C3 FDA- No Expression, 0%

Not a candidate for Keytruda ( Pembrolizumab)

ROS1 Gene Arrangement 4%-Represents Negative Result

BRAF Mutation-Not Detected

I did not get tested for KRA nor ALK........Hmmmmmm, that's something I can ask my oncologist about. My 26th dose of Durvalumab will be up in January. I only included this info in my post for others to read and compare as which biomarkers were done or not done on their end.

Take Care everyone, DFK

 

[Sillycat1957]

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

 

 

[Sillycat1957]

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

[DFK]

Roseann-Link did not work for me.

Hope you took a break from Dr. Google and freed your mind for mindless trivialities like Saturday Night Live with Billie Eilish...LOL🤪

Take Care, DFK

[Kleo]

On 9/18/2019 at 7:50 PM, Robert Macaulay said:

Intresting update on Durvalumab this week

https://www.astro.org/News-and-Publications/News-and-Media-Center/News-Releases/2019/PACIFIC-survival-rates-explained-Lung-cancer-sprea

Bob....that is exactly what happened to me! Went right to my brain!

I still say I had WAY too many steroids with my Durva.

And as far as this possible recurrence...maybe they will zap it! 

Zapping works!

Keep us posted....I still pop in and read up!

 

 

 

[Barb1260]

Hi Kleo. Any updates on your treatment?  

Thank you. The article was definitely interesting. 

[Robert Macaulay]

Kleo

I seem to be fortunate so far it cannot find my brain.😎

Have CT scheduled for first week in November and then the following week meet with Dr Zapper for his schedule and the next day with the Onc for the cocktail schedule, Will be intrested to hear what it entails give me something to do till the end of the year. lol

Take care  Bob

[Rower Michelle]

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

 

 

 

 

 

[Sillycat1957]

53 minutes ago, Rower Michelle said:

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

Wowee! Thanks, for that it helps my feeble brain lol! my report does say it was sent for comprehensive testing, it is pages and pages long with an explanation of what type of test was performed. the % of mutation etc. I will have to check with my oncologist to be sure. I just get ahead of myself sometimes 🤔I will certainly watch the video on You Tube. I like to know how things work in my body, I feel that's a good thing.

So, Michelle, again I thank you and I will keep fighting the fight one day at a time Roseann

 

 

 

 

 

[Sillycat1957]

21 hours ago, DFK said:

Roseann-Link did not work for me.

Hope you took a break from Dr. Google and freed your mind for mindless trivialities like Saturday Night Live with Billie Eilish...LOL🤪

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

[Eagle13]

Well said Michelle!

[Kate7617]

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.

[Laurel]

I had two bouts of pneumonia...one during chemo and the other after radiation.  I found that neirher the oncologist nor the radiologist were good with treating it.  My primary physician helped me through pneumonia.

[Kleo]

16 hours ago, Barb1260 said:

Hi Kleo. Any updates on your treatment?  

Thank you. The article was definitely interesting. 

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. 

[Rower Michelle]

Good to hear from you Kleo!  Maybe you’ll finally get an immuno goodie back on the double combo?? You’re an inspiration girl! Keep on rockin’!!!

[Kleo]

Hi Michelle!

I never get the goodie bags!😣 All I got was a home test for my stool. Ridiculous crap 🤣

[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

 

[DFK]

oops, typo....NCCN.org for National Comprehensive Cancer Network

DFK

[Kate7617]

3 hours ago, DFK said:

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 post

3 hours ago, DFK said:

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

DFK Thank you for letting me know your experience with durvalumab I have had very bad side effects from this durvalumab, I feel that it is causing me more harm than good right now, Too much to go into. I opted out of my treatment today, and asked if there is an alternative to durvalumab, Doc says "not in this setting" so what that means I don't know. I don't know what to do at this point. Any suggestions will be more than welcome, Kate7617

 

s and support.

 

 

 

 

 

 

3 hours ago, DFK said:

Take Care, DFK

 

 

[Opal]

Kleo, great to hear from you!  You still have that sense of humor. 😄 keep it going.

I never got a Durva goodie bag either (just the rash, remember?) so don't feel too bad. I think Bob😎 got one because he started this forum. Ya think?

Got you in my prayers every day Kleo.  

Take good care

Opal

[DFK]

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

[RonH]

Just another quick update on life after Durvalumab:

My Onc called today saying that he received my Biomarker test results (EGFR) and that I had tested positive for the EML4-ALK gene mutation. I guess I have officially joined the ranks of the "Mutants" out there. The Onc said that they have had good results on PFS (Progression Free Survival) with a TKI called "Alecensa" (Alectiinib). I still have my Bronchoscope/EBUS tomorrow morning to biopsy a small indication on a lymph node that didn't show up on the PET scan last year, but showed with a very slight uptake this year. If it comes back benign, then a decision has to be made, SBRT on the one tumor in my right upper lobe or to start the targeted therapy. I guess the SBRT has around a 80% success rate, however the Rad Onc's are concerned as that location was already treated with radiation last year during the initial CRT. From my readings it is rare for them to treat the same location twice and UCLA says that they only do it in very select cases. (???). Of course, even if the SBRT is completely successful, there is no guarantee that I don't have some cancer cells floating around looking for a home. The other option is the Targeted Therapy which the ONC says shows good PFS, but is not considered a cure, however it does seem to help prevent/reduce metastasis to the brain. He also says that it also has some pretty significant adverse effects on some people. (Nothing like reading that that 2.8% of the people in the trials had an AE of death - yes I would say that was pretty adverse).

I guess after  tomorrow I may have several options to consider over the next week. Of course yesterday I spent several hours with the Radiation Techs being fitted for the body restraint and breathing control belt for the SBRT and having 4 CTs done with and without the belt. I didn't much care for that breathing control belt as it felt like someone sitting on your chest/stomach restricting your breathing. I do understand the reason for it to limit the movement of your lungs (and therefore the tumor) during treatment but it was rather unpleasant.  Tentatively I start the SBRT (subject to change) the week of the 14th, for 5 consecutive days. If the lymph node is malignant, the SBRT is out and I'll go straight to the Targeted Therapy (pills twice a day, with apparently extremely expensive pills) the week after.

I hope be able to get my full biomarker test results from the Onc before too long, but he felt the news about the positive EML4-ALK results was important  enough to call me about and the only result that really mattered for me. Not to mention that when the call came in, I was standing in a middle of a cemetery having just attended a funeral and it was not the most conducive location to be able to question the Onc in detail. No, I do not know what my PDL1 Expression is yet, but as Michelle noted earlier, "“Mutants” don’t respond to Immunotherapy even if there is a high PDL-1 (no one knows why)." so that explains why I am no longer on Durvalumab after 10 months and 18 infusions. I sure wish that all the Oncs would do the biomarker testing UPFRONT).

Thanks All - I guess I will go do some reading on the above.

-Ron