Durvalumab

[Robert Macaulay]

Ron

Thanks for the info this might be similar in my situation also,  as it looks like SBRT is on the cards for me at this time in November.?

[DFK]

Thanks so much Ron. You are providing such valuable information for all of us as you maneuver on the front lines. You're in my thoughts and prayers for PFS....carry on.

Take Care, DFK

[Barb1260]

12th infusion in process. Saw the oncologist instead of the PA. she’s not worried about the 5mm nodule on the left. Said if it grows we’ll do a biopsy. Could be inflammation because it pops of everywhere with the Imfinzi. At this point it means nothing. If it’s cancer we will zap it with cyberknife. Can somebody tell me if that is SBRT?  All these abbreviations play havoc with my chemo brain. Also putting me on Wellbutrin. Not only will it give me a little more pep but it will help with seasonal effective disorder because fall and winter are coming. It will also help with the weight gain and depression.  

[Rower Michelle]

I know how you feel Barb! Just called my onc today after a six pound weight gain in less than two weeks. Here comes the lasix again.  It’s a grey day here in KC someone flipped the fall switch fast here. 

If the Wellbutrin doesn’t kick in within six weeks, ask for a psychiatric evaluation, there are newer more effective agents available. Hang in there. 

[Tom Galli]

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

[Kleo]

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!

 

 

[Barb1260]

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!😎

[Roz]

But cyber knife (SBRT) doesn't work on multiple lesions right? Just if you have one mass that can be zapped?

[Barb1260]

Michelle-sorry about the gray days but right now I’d pay someone to get rid of these 95 degree days. Even the born and bred Georgians are complaining about the never ending summer this year. 

 

[Tom Galli]

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

[Sillycat1957]

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

 

[Sillycat1957]

On 10/2/2019 at 3:46 PM, RonH said:

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

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

[Rower Michelle]

Hi Ron!

I’m sorry I missed your post. 

You’re biomarker testing is actually wonderful news! I am ALK Positive too. There are five FDA approved inhibitors available to us with a very high quality of life. Kleo was spot on when she said oncologists get excited about targeting mutations.  

 

I’ve been on Alectiinib for almost a year with excellent results.  I wonder if your doc wants to try the Alectiinib first and save the radiation therapy for a later time.  The Alectiinib knocked out my Mets after a few weeks. The side effects are very manageable, most of us have had some issues with fatigue, weight gain & elevated liver enzymes.  

There are additional resources for ALK Positive patients- a vibrant closed FaceBook Community,       ALKies Unlimited (FB) and ALK Fusion (FB) Website: www.alkpositive.org and YouTube Channel with video feeds from the ALK Positive Summit in Atlanta last August. 

The next ALK Summit has a save the date for July 31-August 2nd (location TBD).  

The leading ALK researchers are here in the US- Alice Shaw MD at Mass General, and Ross Camidge MD University of Denver.

During the Summit Dr Shaw stated there was no better time to be hopeful with lung cancer than today, the research is accelerating survival rates significantly.  In addition to the inhibitors, research for a vaccine and cellular therapy is underway.  

Welcome to mutant land where life is good! 

Michelle

[Kleo]

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?🤔 

[Robert Macaulay]

Kleo

Could it be one location of the tumor from different angles.?

[RonH]

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

[Roz]

 Tom,

 I can ask my doc again. Last time I asked, she said that it would be like  getting a needle biopsy for every one and where I have more than ten nodules that are varying from 1-1.8 cm in the lower right lobe, and then two more in the lower left lobe area..radiation wouldn't be an option that would work. Still waiting for a phase 1 trial at this point.

Good luck to everyone out there!

 

Ro

[Rower Michelle]

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

[DFK]

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

 

[Barb1260]

Hanging in the ER waiting for CT results to see if I have pleuritis. Unexpected scanziety. The breathing pain was awful. 

[DFK]

Oh no, but you’re in the right place. You'll get thru this, hang tough, let us know outcome. Prayers for you Barb

DFK

[Rower Michelle]

So sorry Barb- not a fun place to be hanging out in.  Unexpected scans are unnerving. Keep us posted. 

[Barb1260]

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🥴

[DFK]

Barb, Just a bunch of pleuritis???? You make it sound like a walk in the park. Pleuritic chest pain is pretty darn fierce, usually brings people to their knees. Junk that you're 12 doses in with a case of pleuritis but great that there's no P.E., blood clot or pneumonitis. Sometimes the inflammation of the pleura/lining increases the "lubrication" and fluid can build up.....NSAIDS significantly help as well as rest but good to be aware if symptoms worsen because of fluid buildup. Take care now, enough excitement for a Sunday. Rest well...DFK

[Sillycat1957]

Barb,

Here's a little bouquet of flowers to help you feel a bit better💐.

So sorry about your trip to the ER, hopefully the pleuritis will resolve on it's own quickly and you feel better soon, sending prayers your way!

Keep fighting the fight

Roseann