Immunotherapy for SCLC

[JoshK]

Quick question: I was wondering if anyone had any experience to share with immuno or targeted therapy for SCLC.

A few trials have shown efficacy of Keytruda and Opdivo in SCLC under certain circumstances. Previously, there hadn't been any signs of it working, so SCLC typically isn't even tested for genetic sequencing, protein expressions, etc. So, we're now in the process of getting the testing done for PDL1, TMB and genetic sequencing.

Has anyone here taken Keytruda, Opdivo or anything else for SCLC? Any results to share? Experiences?

Anything you can share would be very helpful.

[Leo]

Josh, I have no experience with immuno or targeted therapy, but have been trying to research additional testing I should request , as well as other biomarkers (like Chromogranin A) to use as part of disease monitoring. Any sources or information you can share would be appreciated. 

[JoshK]

A got a few strong recommendations for Foundation One's standard genetic sequencing plus PDL1. That's what we went with...awaiting results!

[Leo]

Thanks Josh

[Elbeit]

I'm looking for anyone who has had immunotherapy - especially with extensive sclc with brain mets.  My mother in law was diagnosed with extensive sclc in october and we immediately began chemotherapy which she finished in the beginning of march.  apparently her brain cancer (the few tumors we could see) didn't grow during chemotherapy - which is great, normally chemo doesn't control the brain mets.  My mother in law wanted to travel back home (another country) and I went with her - within two days we were in the hospital and its only been a few weeks and now she is completely immobile, although mentally she is still aware, can speak etc.  Physically she is a fraction of her former self.  Because it took so long to get her back to the US, and all the doctors were dismissive - I think her cancer progressed beyond what it should have.  She had 10 days of whole brain radiation, yesterday was the last session.  My sister in law and I had convinced her not to go to keep up with treatments and ensure the brain cancer was under control and that we would go in a few months.  My husband told her she should go because the doctors and said she is fine for at least 8 weeks.  I did not agree.  

It is still unclear to me if she will regain some of her physical and mental function after radiation - or are we simply preventing it from getting worse?  

When we first met with the oncologist I asked about immunotherapy and demanded that they do bio-marker testing, he said he would even though he felt it wasn't relevant, I don't believe he ever did which probably means she needs another biopsy?  While dismissive of immunotherapy,  he did agree to it as an off label use after chemotherapy.   I wanted to do immunotherapy as soon as chemo was over but all her doctors said there was no way the cancer could come back that quickly - although that was contrary to what I have read - my husband went with what the doctors said.  i was terrified that the brain cancer wouldn't be controlled - but I also didn't know if immunotherapy would control it.  When my husband and my sister in law met with the oncologist before we left for lebanon i begged them to ask about immunotherapy - the doctors response was just "no".  I wasn't at the appointment but when I heard I wanted an explanation as to why this wasn't an option.   I went so far as to attempt to switch the doctor to a colleague who I felt would be more supportive or at least explain to us why this wasn't an option.  

I had been instrumental in finding doctors who didn't just go by "protocol" and doing all the research but ultimately you trust the doctors?   I believe we didn't question their decisions enough - or advocate for treatment that strayed from protocol.  

Now apparently the oncologist says we might do immunotherapy and I am very upset because she is in a very bad state, I'm not sure she can even handle it.  

I'd really like to hear of people who have received immunotherapy off label - it seems like there is only info on clinical trials and since it takes time for this info to be peer reviewed I believe there is more information in the pipeline that we don't have access to.  I also believe that off-label uses, and whether brain mets respond to immunotherapy, is information that doctors may have in their network but it is not written about because it is a case by case basis.  

Im frustrated because the forums for SCLC are not very active and getting information about patients experience with immunotherapy is almost nonexistent.  Any info or resources would be helpful.

[Tom Galli]

Elbeit,

You've had a trying experience with your mother-in-laws treatment.  I'll answer what I can.

I understand your frustration about the information content on the forum for SCLC.  Thankfully, only about 15-percent of us are diagnosed with this aggressive and rapid spreading form and that small percentage is likely the reason our content disappoints.  

I've read about immunotherapy trials with SCLC but nothing that is close (to my knowledge) to Food and Drug Administration (FDA) approval for SCLC. I do not know much about using drugs off label but here is a FDA explanation that might provide some insight. Here are the results of recent journal articles published about immunotherapy and lung cancer brain metastasis.

I completely understand your frustration and wish I could provide insight and information to ease it.  SCLC is not that common, fortunately, but that also means that treatment means and underlying research is hard to find.  I hope a solution quickly presents itself.

Stay the course.

Tom   

[Elbeit]

Hi Tom,

thanks for your response.  Our doctor agreed to give my mother in law the same drugs that were used in the checkmate 32 study since they were approved by the fda for non-small cell lung cancer.   he can prescribe them off label to a sclc patient - it just takes a little bit of work with the insurance company.  Often if you have brain Mets you are excluded from clinical trials, and since we didn’t have time to consider a clincal trial bc we needed to start treatment immediately, this was the only option.  I believe there are other patients that have received it off label - but only doctors would know this since it isn’t part of a study that can be written about.  I’m hopjng that someone with sclc or someone caring for a sclc patient who has received immontherapy will respond.  

I know that this cancer is a small percentage of all lung cancers and almost entirely attributed to smoking, which I think explains the lack of research and new therapies as well as the importance of advocating for your loved one. 

Often we feel like we are on a conveyor belt and because my mother in law is 76 they are just dismissive - that she smoked and she’s old so give her chemo and maybe some radiation that’s all we can do.   After 50 years of smoking she quit - an amazing feet - she’s a fighter- and she was in great shape after chemo - but we knew it would come back and that the brain was the big issue.  I honestly believe after chemo was the time to try the immontherapy.  But maybe I’m wrong.  I would just love to hear from anyone with sclc who has had immontherapy.  

Thanks for the support.  

[JoshK]

Hey Elbeit,

First I want to say I'm there with you...my Mom was diagnosed with SCLC in January, right after my father died. It was shocking - among the worst forms of cancer around, and the doctors had thought it was adenocarcinoma prior to the tests coming back.

I've been through all of these frustrations that you're expressing - the lack of progress, the inactivity on these boards, etc. I'd say a few things which might at least help a little.

First, you're right that there is a lack of funding because of the stigma against lung cancer and this type in particular due to smoking. There is some sense in that - focus on prevention is a more sure-fire route to success than is seeking an elusive cure or silver bullet treatment - but not enough to justify the severe shortfall which has been highlighted by the government and international organizations. It is a tragedy, and it's not right, but it's not totally without any sense or rationale.

That said, the other piece to this is a simple matter of human nature - success begets success. I've read just about all the published studies on SCLC since the 1970's, and it's so sad it's almost funny...every time they think they found something, it fails. It's natural that the drug companies and researchers would divert their funds and efforts to those cancers where it seems to be paying off. Failure after failure after failure, and it makes sense that the drug companies start searching for a better bang for their buck and researchers look elsewhere. Rova-T is just the latest example - touted as something of a miracle, it failed the last clinical trial spectacularly and exhibited frequent debilitating side effects.

However, there is a lot going on in clinical - RRX-001, immunotherapy, CAR-T, vaccines. We have to measured about the chances of success (and unfortunately much of it will probably be too late for our loved ones...we need to acknowledge that), but there is some good news in this cancer lately. For example, Opdivo is being fast-tracked for approval for SCLC by the FDA: https://www.healio.com/hematology-oncology/lung-cancer/news/online/{f1816c1f-213c-49e7-a7b3-81d24b550158}/fda-grants-priority-review-to-opdivo-for-small-cell-lung-cancer There are also a number of trials with Keytruda that seem to be going well also.

Finally, a more active forum for SCLC is the Small-cell lung cancer support group on Facebook. I like this forum as well as some of the others, but the Facebook group really is very active, and I've met  a number of people with experience on Opdivo and Keytruda (some of whom have done very well on it) as well as some long-term survivors. I'm not trying to divert people away from here, but I do really like making that forum part of my daily ritual.

I hope some of this helps. I'm always available to talk.

 

[JoshK]

Oh also, I wanted to add that I share your mentality - do everything you can. Why not try immunotherapy for maintenance? So long as the person doesn't have bad side-effects, this cancer is so deadly the idea of just waiting for the cancer to come back is unfathomable to me.

[Pat_C]

I start immunotherapy Jan 16, 2019.  Has anyone had immunotherapy since Optdivo was approved by the FDA for SCLC?

I started chemo with chemplatin and etopocide in December 2017 (I was hospitalized with SVC syndrome).  After completing the first line chemo's I was stable for 10 weeks, went on topetecan which did not work at all, had emergency superior vena cava stent placement, went on taxol, interrupted chemo for 10 days radiation, back on taxol.  Taxol shrunk tumors very well, unfortunately cancer has become active again.  The cancer is still confined to my lungs and lymph nodes in the lungs.  It has not metastasized to any other part of my body.

I have survived for over a year now.  Is it going to be too much to ask for more time?  

If no one has undergone immunotherapy for SCLC, I will keep you posted.  

 

[Tom Galli]

Pat,

Welcome here.  To my knowledge, you are the first SCLC survivor on the forum being treated with immunotherapy.  Is it going to be too much to ask for more time?  Heck No!  

Needless to say we are extremely interested in your treatment and are most hopeful it arrests your lung cancer.  Share details with us for there are few options for treating small cell and immunotherapy is indeed a new and exciting one.

Stay the course.

Tom

[BridgetO]

Hang in there Pat! More time is not too much to ask for.

I recently got this in an email from Lungevity:

"A big win for small cell lung cancer (SCLC)

Results from the IMpower 133 clinical trial showed that the addition of an immunotherapy drug, atezolizumab, to the standard chemotherapy regimen for SCLC is beneficial. The standard of care for SCLC has been chemotherapy for the past 30 years, so this is indeed a big deal!"   (this drug is known as Tecentriq)

Best wishes to you.

Bridget O

 

[Steff]

Pat,

I hope that immunotherapy provides as much help as it has for the thousands of others who have taken it for non-small cell LC. My mom was on it for over 1 year and we couldn't ask for better results.  She is now on a treatment break until the cancer rears its ugly head again.  I hope that you are able to share your experiences with us as you travel along your path of treatment.  Your insight will be very valuable to future members (and us too!) who will follow in your footsteps.  I wish you all of the best!

Take Care,

Steff

[LaurenH]

Hi, Pat,

We hope this treatment increases your quality of life and survivorship! We appreciate your sharing your experience in this forum. I'll do some investigating to see if anyone else is currently on or about to start this treatment. Please continue to keep us posted!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[06211219]

My husband has started on tecentriq - and from what I understand it isn't FDA approved yet, according to his oncologist it is "on the guidelines". Of course I had a thousand questions to which all he could really tell me is it has added 2 months to some lives. 

 

My husband has SCLC extensive with brain mets at diagnosis.

 

I hope it works out for you. 

[BridgetO]

Hi there and welcome.

Tecentriq is the brand name for a, atezolizumab, which has been used for certain types of non-small cell lung cancer and was originally FDA approved for that.   Here's an excerpt from an e-mail sent by Lungevity recently

" A big win for small cell lung cancer (SCLC)

Results from the IMpower 133 clinical trial showed that the addition of an immunotherapy drug, atezolizumab, to the standard chemotherapy regimen for SCLC is beneficial. The standard of care for SCLC has been chemotherapy for the past 30 years, so this is indeed a big deal".

If you want more information about it, you can Google "Tecentriq small cell lung cancer" and ignore the entries that are about NON-small-cell. i generally don't recommend Dr Google, but since this is a new treatment, that may be the only way to get info.

Let us know what other questions you may have and how we can support you.

Bridget O

 

[Pat_C]

I started immunotherapy (Optdivo and Yervoy) Jan 16 and had the second round Feb 6.  Unfortunately the cancer is outstripping the immunotherapy.  In three weeks, a new tumor has appeared above my clavicle and is growing rapidly.   Unfortunately I now have c. diff colitis and all treatment has had to stop.  My doctor and I have agreed I will be resuming chemotherapy to try to shrink the tumors.  

 

[Golfman]

Hi Pat. I've been diagnosed with sclc in my right lung and a "small" 1/4" lesion in my brain. I'm a very active 75 yr old man, addicted to golf. We're awaiting approval from medicare and my insurance co, and will start treatment ASAP. The reason for this post is that my Drs will include Tecentriq given over one hour during day 1 of my chemo. I'm guessing all this will start next week. I have every emotion you can imagine, and initially thought the treatment process would be a waste of time and resources because of my age. Folks on this forum helped me make the treatment decision. I'll post about my treatment as it occurs. Good luck to all, and may God bless all of us.

[Steff]

Pat-

I'm so very sorry to hear about your progress and C-Diff.  My mom has had C-diff twice and it is horrible - she says it's probably the most horrible thing she has had to deal with.  I am sending positive thoughts your way.

Take Care,

Steff

[Golfman]

Just finished my first chemo and was given atezolizumab as the first injection, followed by the standard chemo treatment. It's only been 4 hours or so, but no side affects. Yet. Hope that you are feeling better, Pat.

[Rico]

My 68 yo mother w/ SCLC extensive was diagnosed 11/18 w/ mets near liver, heart and in brain, has completed 4 rounds of carbo/etopo w/ Tecentriq immunotherapy. Immuno will continue every 3 weeks indefinitely. Scans this past week show no evidence of disease and Dr. reports that healing lesions have now disappeared entirely which he believes indicates that Tecentriq is working. No side effects experienced specific to Tecentriq. Have completed 14 of 28 radiotherapy sessions. That’s as good as news gets. Cautiously optimistic. We live in the U.S.

[Golfman]

That's fantastic Rico. Please keep us all posted. I've just finished my first chemo round, which included immuno during the first session. Your post is encouraging. Thanks!

[Rower Michelle]

Rico that’s great news!  

[BridgetO]

Yay for your mom! Yay for NED!! Yay for tecentriq!

[Golfman]

Beginning my second round of chemo today, with Tecentriq being the first injection. No results to share obviously, but wanted to post that the process is continuing. Really liked Rico's post. Maybe ther's hope after all. Keep the faith; golf season is on the horizon.