Who has Small Cell Lung Cancer?

[MyWifeSCLC]

It's kinda hard to keep up with those who have SCLC or loved ones with SCLC, especially when this subgroup is not used. It would be nice if a few of you would comment here to let those of us know.

Steve

[Olivia]

Hi Steve!

Im with you. My dad is battling SCLC. We got a clear scan of his chest/abdomen last week but this past weekend we learned he has metastasis to the brain. Another bump in the road...radiation starts tomorrow. Praying for your wife! We’re in this together. 

[0621121974]

Agreed. I get crap for saying this, but I think it speaks volumes that just about 85-90% of those that post on this site are NSCLC. It is the same on Team Inspire website. My husband is at 18 months with ES SCLC - with brain mets, developed MAC disease, and had a RUL wedge resection to try and remove some of that MAC infection. He is doing ok, but I am constantly waiting for the other shoe to drop. The cancer is NOT gone, just stable. He now has another cavitated tumor growing again per his last scan in July - just watching right now because he refused to do anything about right now, because he is asymptomatic. And he preferred to not have "maintenance " treatment. The immunotherapy (Tecentriq) he received actually caused the MAC disease, so he is not interested in that again. I am a realist, and I know at some point this will rear it's ugly head. Don't get me wrong I am grateful for every extra day - but that is what it is just "extra" time, which brings little comfort to me and his children. 

 

I do wish and hope for the best for your wife and your father

 

 

I do wish and hope for the best for your wife and your father

[Golfman]

I was diagnosed in Feb 2019. Had a brain MET and some nodes in the lining of my right lung. It happened very fast. One day I'm shoveling snow and feeling good, next day I'm wondering what the heck happened and my life changed. I experienced shortness of breath, so they did scans and a thoracentesis (draining fluid from my chest), a biopsy, then they gave me the news. SCLC. They immediately put me on chemo with carboplatin, etoposide and tecentriq, which was recently approved for first line treatment. They found that I was allergic to etoposide, so they substituted paxlitaxel, and I still have weekly infusions of it to this day. One of my doctors suggested whole brain radiation in May, but we refused. Then the brain MET disappeared, which I think was due to tecentriq, but no one knows for sure. Only God knows. It's gone. For now. Paxlitaxel side effects are not pleasant, but I can still play some golf. I'm now a frequent flier at the cancer center and still not an expert on this disease. There are so many things going on now in research that I could never keep fully up to date. I rely on my medical team to be the experts, to be up to date on SCLC and to do their thing exceptionally well. I ask tons of questions and still make the final medical decisions. But I think the most important aspect of this disease is attitude! Positive or negative, that's the only thing I can control. I see some patients who are so depressed they make me feel depressed. That's not a good way to go through this thing. I've experienced this depression and can say that it's really ugly. I've even heard that negative attitude can affect not just the patient but also the disease. So I'm in charge of my attitude and rely on the help of family and friends to keep me positive. Avoid negative crap always. So that's the extent of my SCLC experience. I suggest that patients and supporters stay focused on positive attitude. Do whatever is necessary to keep your wife's attitude positive. That's a very, very tough task, maybe even tougher than the treatment of this disease.

[Olivia]

Wow, thank you so much for posting and letting us know how you’ve come to far since your diagnosis. It definitely gives us hope that our loved ones can do this. My dad is definitely dealing with some depression, which he isn’t really attempting to tackle. But that’s what depression does to you. My sister and I are just reminding him every day to keep fighting and keep showing up for himself. I’m definitely going to share your story with him in hopes it gives him some more hope. 

[TJM]

I have Large Cell Neoecrodin Non small cell lung cancer.  It supposedly acts much more like SCLC than NSCLC and has the same first line treatment.  So I tend to follow this forum the most. Had lower right lobe removed, Chemo (cis/etp) and adjunctive radiation. I should be NED.....will find out soon enough.

As for depression, I just finished treatment last week and almost immediately went to a dark place for a solid three days.  By far the most depressed since all this started in January.  Yesterday was the first day I felt mentally better since last week. No idea why, just glad the cloud has passed.

Wishing you all the best

Peace

Tom.

[LexieCat]

4 hours ago, TJM said:

As for depression, I just finished treatment last week and almost immediately went to a dark place for a solid three days.  By far the most depressed since all this started in January. 

I kinda think there's always a letdown after a big effort is finished. I'm a retired prosecutor and I used to feel that way after I finished a trial and the jury was out. It's like you've done all you can, and there's a sense of being at the mercy of forces outside your control, after a big push giving it everything you've got.

Glad you're feeling better--I think it just takes time to adjust to not having to actively battle.

 

[0621121974]

I think that there is nothing wrong with feeling negative at times, if that is how you feel. No one should be made to feel bad for that.  I am not a believer of your attitude can fix this horrible disease. Not that I think there is anything wrong with those that handle their situation that way. You should do what works for you. I think people do their best, and sometimes it’s ok to be down. Sometimes its ok to ask why me? Because facts are facts, and not everyone will have a good outcome. I am thankful, but positive, no. Hope for the best, but prepare for the worst is how I handle it. 
 

Not trying to be a downer, but as a person that visits sites for information and to read people’s stories, I personally prefer a more realistic view and approach. 
 

I hope you all and your loved ones continue to do well. 
 

😊

[just me]

Hi Steve,

My husband has small cell extensive.  Dignosed November 2019.  I don't get on here too  often, but I try to comment when I do.

Just me

[Daniel N]

I have small cell lung cancer.Was diagnosed around February 6 2020. Went through chemo and radiation and am clear so far after my 3 month scan.

[Dona]

On 8/30/2020 at 11:03 AM, Daniel N said:

I have small cell lung cancer.Was diagnosed around February 6 2020. Went through chemo and radiation and am clear so far after my 3 month scan.

Hi Daniel. How are u doing? Can u pls post an update? I'm just out of an EBUS bronchoscopy and preliminary dxd wit sclc.

Hungry for any and all info on this wretched disease. Thx. Dona

[KathieF]

Hi Dona,

My husband has ES-SCLC and I posted my first introductory post yesterday (HubsSCLC) in this folder that gives details of where we’ve been so far.   He also had an EBUS bronchoscopy and they did a biomarker test at that time also.  I know the early days are extremely hard trying to research everything.  

[judyb75]

I do.  It all started April 25, 2019 with an xray after coughing up a small amount of blood a couple of times in the span of about a month.  I was actually diagnosed, after biopsies etc, with sclc July 2, 2019.  I had two nodules upper and lower on my left lung. Sorry I don't remember the size but I believe the largest was 3mm.  After many chemo, radiation and immuno (tecentriq) I was told I was in "complete" remission on January 27, 2020.  I still lack the energy I had prior to my diagnosis and was told that will never come back 100%, BUT it could and has been much worse.    It is now October 30, 2021 and I just got my lab results last week and all is well.  It's like my Oncologist said, cancer will be the elephant in the room...forever.  One day at a time, that's really all any of us can do.  Even those without cancer.

Prayers for you ALL and I include myself in those prayers...

[Tom Galli]

Judyb,

Welcome here.

Your's is a great good news story and I am so happy you've found us. Regardless of lung cancer flavor, any form of lung cancer is the elephant in our room forever. Unfortunately, we are all in the same boat, but I am so pleased to hear your boat is still sailing.

Stay the course.

Tom

[Cheryl Lynn]

So glad I found this group and reading everyone's stories. I was diagnosed with sslc January 7/22. Very hard news to swallow but doing ok. Just finished 12 rounds of chemo. I get my pet scan tomorrow, and fingers crossed will be good news. The depression side is just hitting me and I'm trying everything not to fall in the black hole. I'm so tired most days and yet others I can function normally. Nauseous comes and goes but manageable. Praying for some normalcy🙏

[Tom Galli]

Cheryl,

Welcome here and glad to learn you've finished chemo. I do hope your PET scan conveys good news.

Stay the course.

Tom

[Lahalsa]

On 4/24/2022 at 7:35 PM, Cheryl Lynn said:

So glad I found this group and reading everyone's stories. I was diagnosed with sslc January 7/22. Very hard news to swallow but doing ok. Just finished 12 rounds of chemo. I get my pet scan tomorrow, and fingers crossed will be good news. The depression side is just hitting me and I'm trying everything not to fall in the black hole. I'm so tired most days and yet others I can function normally. Nauseous comes and goes but manageable. Praying for some normalcy🙏

Hi Cheryl! Just diagnosed a couple weeks ago and preparing to start chemo treatment possibly next week.  I know it's different for everyone and dependent upon which drugs you're on - but can you tell me what to generally expect?

[judyb75]

Hi Lahalsa,

First of all I want to say I'm sorry that you have encountered what so many of us have but happy that you found this site.  Having said that thank goodness being diagnosed, even with small cell, doesn't have the outcome these days as it used to!  It's really very difficult to tell another person what to expect because, as you said, it's different for everyone etc.  I didn't experience the nausea that some do but did have complete hair loss from the chemo, THAT was probably the most difficult for me but it grew back after about a year.  My hair has always been slow growing.  AND I'm also still kickin'  after having been diagnosed with small cell in my left lung upper AND lower areas in July of 2019.  I do still experience fatigue and as a person that LOVED to walk that has certainly changed my being able to do as much of that.  Still able to be independent and take care of myself and all that that entails and I'm grateful for that.  YES I thank God AND the great oncologists and their staff that I had and continue to have the support and caring of.  I hope you have that same kind of people and medical staff surrounding you.  My thoughts and prayers will be with you.  Just keep the faith, be positive and keep on keepin' on! 

I posted more of my situation somewhere on here, maybe on my profile.  It's been awhile so I'm not really sure...

Take care...

 

 

[LaurieBurgess]

My dh was dx with stage iv sclc that had spread to brain on Nov 17, 2021. He had a work place accident where he hit his head suffered a seizure and transported to nearest hospital. Once he was at ER he suffered another seizure.  After testing it was discovered that he had a brain tumor.  Next day we received the news that he had a lung tumor in left lung.  Lung bronchoscopy was attempted on 11/24/21 unfortunately once they administered fentanyl he suffered a heart attack.  No previous history of heart problems.  Heart attack was caused by fentanyl.  Discharged after 3 days.  2 weeks later we were informed that he had 3 brain tumors.  Lung biopsy was done on 1/10/22 confirmed sclc dx unfortunately he suffered a collapsed lung.  In hospital for 7 days.  In my state if you have a seizure you can not drive for 6 months.  My dh was only 57 when he had his seizure.  He did radiation on brain tumors which appeared to be working.  Chemo was started a week later.  Unfortunately the immunotherapy was no longer working by Sept 2022.  He just completed chemotherapy with pacilatell (taxol).  Most recent mri of brain shows growth of one of the tumors now scheduled to meet with specialists for LITT treatments.  Surgeons will not due brain surgery due to his reaction to fetanyl.  Now being told that there is brain swelling.  I had to quit my job because of all of numerous appts treatments.  He could not drive and I was spending my entire paycheck on transportation and caregiving.  Been living off his 401K.  We have to much in assets for him to qualify for Medicaid.  Facing medical bills to the tune of 30000.  Rate we r going we will not be able to afford his treatment for much longer.  How do people survive when faced with the mounting medical bills.  We own our 2 vehicles outright both of them over 15 years old.  Live in a 750 square foot house.  We do not live above our means.  We both always worked and never took a handout and always paid our bills.  Now we can barely afford health insurance. We had to go to the marketplace.  Rates went up for us by 75% and we are still responsible for 20% of all medical bills once he meets his maximum out of pocket expenses.  The LITT treatment costs close to 40000 we will be on the hook for 8000 of it.  What do others do for help with the medical bills.