Prefer Realistic

[06211219]

My husband is a fire fighter was just diagnosed in September - small cell lung cancer extensive stage - 7 brain mets, had two removed because they were impeding on his brain stem. Has finished chemo 1/4 (Carbo Etopiside). Now he is on Tecentriq which was for bladder cancer then NSCLC - now they are giving it to SCLC. It's not a "wonder" drug as some have professed. In a limited amount of patients it prolonged their life by 2 months. I have to tell you - while I appreciate all of the positivity I see on here - it is bothersome that people aren't honest or or realistic. I have been searching for a forum to help get things off my chest - and every post I read it - everything will be ok.

 

I 100% do not believe that. You can not  survive brain mets. Period. He was given a year - and that's all I think about. I don't want to hear it's going to be okay. I want  to hear that sucks.

 

Sorry I don't mean to be disrespectful.

[LexieCat]

Hi, and welcome.  It DOES suck.  I'm so sorry you guys are going through this.  I'm not sure I'd go so far as to say nobody can survive brain mets--some people do.  But that simply doesn't happen for many people, and yes, it's important to balance hope with realism.  For a lot of people the options simply run out.  Sometimes I think that "hope" has to be directed toward what IS possible--reducing pain, getting to a place of emotional peace, if that makes any sense.  

Feel  free to vent here, anytime.  

ETA: I'm grateful to your husband for his service.  I worked in public safety for many years, and first responders make incredible sacrifices to keep us all safe. It's frustrating when we can't do something to spare them the hardship and suffering from something like cancer.

[06211219]

Thank you. I certainly don't discourage hope and well wishes for others, but I am of the feeling I will be left with our three children 2 of which are young and I am devastated and I know they will be too. And sometimes I just want someone to just agree with me and not necessarily offer words of hope, if that makes sense.

 

Thank you again. 

[LexieCat]

It makes total sense.  I can't even imagine how I would deal with the challenges facing you.  All I can suggest is to do what you can to appreciate the time you do have together and try to build a support system to help you through it and beyond.  

Please let us know how we can best support you.  We have members here with all kinds of backgrounds, if you need help with something specific.  Otherwise, it's just fine to use us as a sounding board or a place to vent.

[Lisa L]

I totally agree with you and it sucks and it is not fair.  This is a really good forum for you to vent, scream get out your feelings and just know people are hearing you...

[Tom Galli]

I also agree.

On Sunday, a high school friend passed with small cell lung cancer. We were target shooting in April, he was diagnosed with extensive stage in July, and passed after unsuccessful first line treatment last Sunday.  One hundred and eighty three days from diagnosed to morned. So small cell lung cancer is indeed ugly and treatment options have been largely unchanged for 30 years. Small cell lung cancer does indeed suck!

Your post is not disrespectful.  Hope is important to us because for all forms of lung cancer (until very recently introduced targeted therapy and immunotherapy), hope was our only effective treatment. My disease is worse than horrible.  Your husband's form is more horrible than mine.

I recall my medical oncologist telling me, after 4 recurrences, that I may be able to extend my life by recurring chemotherapy and that in that period, the FDA might approve a new effective treatment. I was surviving on hope and fortunately during this period, a new treatment emerged that saved my life.

I hope and pray the same happens to your husband.

Stay the course.

Tom

[06211219]

I'm so sorry to hear about your friend. And I am happy that your situation took a turn for the better. 

I will always "hope" something changes - but just like oncologists don't have a crystal ball - and everyone is different - I believe you also have to look at facts. People die from cancer - some types more than others. I believe his is as serious as it gets, and I see no good outcome other than him not having cancer.  I was looking for a place where people that have had experience with extensive SCLC would share their experiences, their feelings and their treatments. For me it is all about time - I almost obsessed with it. 

The doctors at U-Penn where he was diagnosed, his doctors at FCCC, all gave 6 months to a year. He refuses to hear or read anything negative - he has himelf returning to work as a fire fighter in 6 months. We have argued about this - because I am on the opposite side of the spectrum - give me the good the, bad and the ugly - I want to know - NEED to know - whereas he does not - definitely causes friction. Something I absolutely do not want to have with him.

Sorry just ranting.

I appreciate everyone's responses and well wishes - and my apologies again if I offended anyone with my original post.

 

[Rower Michelle]

There are no apologies necessary.  I don’t find your post disrespectful or offensive. There’s no doubt about this- it does suck all around.  Hopefully you are taking care of yourself as best you can. Vent frequently & don’t hold back.  No one here will ever judge you. 

[Infomaven]

I really appreciate this post. My Dad was diagnosed only 2 months ago and I sit in his room today, on my birthday, wondering if we’ll make it to tomorrow. He was diagnosed with extensive SCLC on his own birthday in November. He had WBRT after diagnosis but was determined to be too weak to proceed with chemo after several falls & a scan that showed his mets had spread beyond his brain to his bones, liver, pancreas, kidneys, and lymph nodes just a few short weeks after his initial scan. 

Our family fought alongside my mom almost exactly 10 years ago as she battled NSCLC. Chemo didn’t make anything better for her, only caused more pain and suffering. Even though Dad technically could’ve undergone chemo, we were aware it could hasten death for him & had no medical benefit for him. He chose not to proceed when it came right down to it. There is no magic bullet for SCLC despite advances with NSCLC since mom’s illness. 

It totally sucks. Soon, my kids won’t have any living grandparents on my side & my sister & I will be all that’s left of our little family. Dad has been amazing through this brief journey & the only thing I can see as a benefit right now is that he’s teaching me as much about how to die with courage and grace as he taught me about how to live life on a daily basis. 

Dont feel like you need to sugarcoat anything. Call a spade a spade & vent all you need to.

[06211219]

I am so sorry that your family is going through this. 

To lose one parent is horrible, but to be facing losing both - I can’t imagine. My thoughts are with you. 

[06211219]

And happy birthday - although I imagine it isn’t that happy at all. 

[JoshK]

Hi There,

This is certainly the place to get it all out there - we've all been there or are there, and SCLC truly is one of the worst. There's nothing wrong with feeling however you feel and certainly nothing offensive about voicing that here.

However,  I do want to correct something regarding Tecentriq and clinical trial data in general. Oftentimes, you'll read the study reports or headlines of what seems to be a big deal, but you don't get why people are so excited. So, this study touted as a major breakthrough reported a 2-month improvement in PFS, OS or whatever. Those are baseline statistics for how reports across all kinds of diseases and medications. However, what that practically means is not that it prolongs some peoples' lives by 2 months. Rather, it means that for most people it doesn't work at all, but for a sub-population of SCLC patients, it prolonged there life very significantly (in many cases even longer than the time period of the study). That's how immunotherapy seems to work - it produces durable responses in a distinct population of people (but usually eventually stops working), but it doesn't help for most people. So, if your husband's tumor has the right genetic profile, than there is a chance it may very well be a life-saver for him. But, as with much with these new treatments and this terrible disease, so much is uncertain...some people who don't have the right signs in their genetic tests, and it somehow works, and some people who have all the right signs aren't helped. It's a crap shoot.

Best of luck in everything!   

[06211219]

Thank you Josh, and I appreciate your response. 

[06211219]

And just to clarify - I wasn't saying Tecentriq wouldn't work - just that his oncologist couldn't give me any data - any info I received I read. Maybe it would be helpful if they published data of the individuals it DID help. Their genetic testing/age/sex/stage etc. At this point I haven't seen anything (doesn't mean it isn't out there). And I was also under the impression SCLC isn't tested for genetic profiles/mutations/markers? At least his current doctor and his initial doctors at Penn said they didn't - that was more for NSCLC. My apologies if I am wrong. 

Talking to the doctors and doing my due diligence researching - it seems the deck is stacked against him. He is male and it had already spread to his brain at diagnosis. So I just don;t feel very positive. Maybe that works for some people (maybe even most) - but for me I don't want to set myself up for a horrible fall - this is the worst news my family could have received.

 

I do appreciate everyone's responses and kind words. 

 

[Tom Galli]

Unfortunately, a small cell lung cancer diagnosis is the worst news anyone can receive.

I've read a lot of study reports in 15 years of sifting through clinical trial reports.  Scientists and doctors who perform the study are interested in the aggregate, not the individual. In fact, clinical trials are biased against capturing and reporting individual results. They are normally double blind to avoid bias and individual data sets are normally not reported.

Most small cell studies I've looked at are focused at inhibiting programmed death ligand 1 (PD-L1) and programmed death 1 (PD-1) signaling. PD-L1 and PD-1 are not tumor markers in the Targeted Therapy sense.  They are proteins on each cell in the body to protect cells against immunotherapy assault.  The aim of the research is to unmask these proteins in small cell cancer and open the cancer cells to attack by the immune system.  There are a number of active lines of research and some promising discoveries -- Tecentriq.

But the deck is stacked against small cell.  By percentage of research dollars spent, the deck is stacked against all lung cancer research.  

I recall your stating your need to know compared to your husband's desire to not know.  My wife and I had exactly the same difference in view points.  I'm an engineer and I need to know how everything works but when it came to my lung cancer, fear overwhelmed my curiosity.  My wife on the other hand was the research engine, and I can recall her trying to tell me details and me doing everything I could do of to avoid discussing details.  During oncology consultations, especially after my 3rd recurrence, I stared silently at the clock while my wife and doctor discussed possible treatment alternatives.  I'd enjoin my surgeon in conversations about hair transplant procedures to avoid hearing details about my situation.  Now that I've been NED for more than 10 years, I'm back to my inquisitive self.  So I completely understand your friction dilemma.  My wife became "large and in charge" and I followed orders.  That is how we got beyond the friction.

Stay the course.

Tom

 

 

[06211219]

Thank you for that explanation.

 

That is pretty much how it goes - I talk and talk and ask questions, and he just quietly sits there. I am not judging or holding that against him - I can even imagine how this is for him. 

[JoshK]

Hi there,

The only hard data that is out there unfortunately are the averages, which don't really tell the story given that it kind of works or it doesn't...that's why they make such a big deal about something like two months - when the average moves, it means something! There were other hopeful studies with Keytruda. Opdivo seemed like a winner until the last trial results, and then there are a few other things in early stage development.

As to individual success stories - check these sites, the Facebook SCLC group and other online resources. They usually don't publish individual case studies until long after the fact, but there are people with SCLC involved with some of those early studies who have been alive-and-well for years on immunotherapy. One I know has made it 3 years on Keytruda I believe. In the Facebook group, there are people who've made it 7, 9 and >10 years. Some of them were extensive.

You're also right about biomarkers - while PD-1 / PD-L1 are the winners in NSCLC, there is a lot of debate if they are even relevant for SCLC (and I believe they're very rare for SCLC anyway). However, what I've found in going through this journey with my Mom is that a lot of the latest thinking isn't really published, and you see snatches of it online and then often can't find it again unless you saved it somewhere. In this fashion, I came across some studies and writing (which I can no longer locate) that indicated TMB (tumor mutation burden) and microsatellite instability seem to be relevant for SCLC in terms of immunotherapy efficacy, but that isn't certain, and investigation into clinically relevant mutations continues in clinical studies. 

So, yes, given the uncertainty genetic testing is usually not done for SCLC, but we did it anyway! We got a Foundation One test, which had such interesting results that one of leading experts on SCLC (associated with Lungevity I believe) at Memorial Sloan Kettering offered us free of charge their own genetic panel, which is even more accurate. It showed my Mom with a high microsatellite instability and a high TMB, which the doctor said should bode well for her in terms of immunotherapy efficacy, and it is quite rare for SCLC. Again, none of this is certain, but that's what some of the smartest people on this disease believe.

As for my Mom, she was diagnosed almost exactly a year ago with a small primary tumor and a single brain metastasis (which caused a seizure and how we found out there was an issue to begin with). She had the brain met surgically removed (she was lucky enough for that the be possible) and then treated with gamma knife. After that chemo took care of the primary tumor quite quickly. She had 6 cycles total, but the tumor was basically gone after 2. She's been cancer free ever since and suffered no side effects from any of her treatment except hair loss, some bloating from the steroids and 1 day of bone pain from the neulasta. She then opted for consolidation radiation - that also isn't the standard of care for SCLC either, but after some promising studies some of the more forward-thinking doctors are recommending that too. She had no side effects from that either and continues to do well!

The point I'd like to make is that you're right - with SCLC, the deck is stacked against you. The stats aren't good (though they're better than what you can find online, which are dated). However, there can be hope. It's good to be realistic, as you are, but look at someone like my Mom or these long-term survivors out there. I live in fear waiting for the day that scan comes back ugly, but she has already done so much better than the odds...in fact, given that average survival time after diagnosis is like 10-11 months, the's already beaten them!

So, your husband was told 6-12 months, and indeed that is the average. However, no doctor can tell you who beats the average, and it might just be your husband. How is your husband anyway? Side effects? Symptoms? What is the status of his scan post chemo?

I wish you both the very best of luck.

 

 

[LexieCat]

I really love reading your posts, Josh--they are SO interesting and informative.  I always feel like I've learned something.  Thanks for sharing all your research and expressing it in such an easily-understood way.

[06211219]

Thank you Josh, and I appreciate your response and all of that information.

He is ok. No shrinkage but stable after all of his chemo. He had 5 cycles. The last two they added the Tecentriq, and he will continue on with that as maintenance, provided the insurance will still cover it. They only approved 4 injections and that was 60k. Has lost about 70 pounds in 4 months - he lost his taste when they had to remove 2 of the seven brain mets, so that has also hampered his eating. 

His doctor really doesn’t seem concerned about the lung, it’s his brain he said is the issue, suregery isn’t an option. He had headaches for about a month, and then one night at work he had a focal seizure, they took him to UPenn, and had me come down and that’s when we found out. He had 10 rounds of WBR, right before he started chemo. 

I will look into the Facebook page. 

And again I really appreciate you taking the time to respond to my ramblings. 

And I am so happy for your mom, that is wonderful.

[06211219]

P.S. sorry for the typos 🙁

[JoshK]

No problem. I know how hard and lonely this journey can be, and I'm happy to help.

So, his doctors feel the Tecentriq is keeping him stable? If so, that's great!

A few random thoughts:

1) If insurance isn't covering the Tecentriq, you could try appealing to the drugmaker. They sometimes do provide the medication free of charge in return for monitoring the progress.

2) Have they considered gamma knife for the brain lesions which weren't surgically removed? My mom's doctors basically decided that would be their approach if she gets little spots that pop up.

3) If the Tecentriq does prove to be working, then you'll probably be on the "bridge" journey. Nowadays, there are so many advances coming out - for many cancers it seems to be a breakthrough  every year or two. New treatments for SCLC were nonexistent for the last 30 years, but something happened about 2 years ago, and now it seems like there are lots of promising developments  every few months. So, the idea is a new treatment comes out, and if it works, that will be a bridge to get a patient to the next point. If and when the bridge stops working (they usually do at some point), then there will be something new to provide the next bridge - that's the hope anyway.

Really best of luck to you and your husband. I feel for you.

[06211219]

Thank you.

We did ask about gamma knife and because of where they are - they said that wasn’t an option. 

Mid insurance does become an issue I will definitely reach out them directly.

[Sunny Harris]

On 1/24/2019 at 12:11 PM, 06211219 said:

My husband is a fire fighter was just diagnosed in September - small cell lung cancer extensive stage - 7 brain mets, had two removed because they were impeding on his brain stem. Has finished chemo 1/4 (Carbo Etopiside). Now he is on Tecentriq which was for bladder cancer then NSCLC - now they are giving it to SCLC. It's not a "wonder" drug as some have professed. In a limited amount of patients it prolonged their life by 2 months. I have to tell you - while I appreciate all of the positivity I see on here - it is bothersome that people aren't honest or or realistic. I have been searching for a forum to help get things off my chest - and every post I read it - everything will be ok.

 

I 100% do not believe that. You can not  survive brain mets. Period. He was given a year - and that's all I think about. I don't want to hear it's going to be okay. I want  to hear that sucks.

 

Sorry I don't mean to be disrespectful.

That sucks. The brain radiation kicked my husbands *ss. I watched my husband die a little more each day for 10 months. He just turned 54 years old when he died of small cell lung cancer. He didn’t smoke. That really sucks!  I feel your anger and I feel your pain. You’re not alone

[06211219]

Thank you Sunny. And I’m so sorry about your husband. And I’m glad my post didn’t offend.