Questions and help

[Leah5906]

Hello, my mom was dx'd with SCLC in November of 2017 by accident basically.  She was involved in a minor auto accident in July, where she sustained bruising of her chest. After several weeks of trouble breathing, coughing, and many visits to doctors who treated her for what they said was ongoing recovery from the seatbelt trauma to a sinus infection and bronchitis,  she was not feeling better. She ended up having an MRI finally which showed a partially collapsed lung, which would make sense to some extent due to the auto accident. She then had a bronoscopy which is when the 5cm tumor was found in her lung. A PET scan showed this was the only tumor, so the car accident was a blessing in disguise because the cancer was then caught before it spread.  I did the worst thing ever and googled SCLC and my heart sank. She has completed her 6 chemo rounds, 35 sessions of radiation to her lung. She did amazing,  hair loss and fatigue being her only side effects. We are in Ohio so we had gotten a 2nd opinion from The Cleveland Clinic prior to her treatment, in which they confirmed the dx of small cell and advised that preventaive light radiation to her brain should be done as this cancer is known for spreading there. She was feeling better and better after the chemo and lung rad was done, energy was back, appetite in full force. Scan showed decrease in size from 5cm to 1cm. The oncologist said he could not tell us if that was still tumor or scar tissue from the radiation.  What the heck?? He said we had to wait and see if it grows or not and then we'd know, but kept reiterating that the cure/survival rate is only 20%. She then received sessions of low dose brain rad and completed this in April. Here is where I need some opinions, she had the side affects of sore scalp and fatigue after the brain rad but was starting to get her energy back and feel better, until about 2 weeks ago. She has had dizzy spells, is very fatigued and has no appetite. Is it normal after rad to start feeling better but then start to decline almost 2 months after rad was done? She got bloodwork done at her GP which came back fine, he told her to drink tons of water. She has her next scan with oncology next week, and honestly I am a mess. My family is small, and my mom is what holds us together.  She has been so strong and positive, but she is also starting to get angry and depressed now. We are all just waiting for the other shoe to drop. I know there are surviors but I have been preparing myself for the worst from day 1. The  decline she has experienced in the past 2 weeks has made us all dread the results next week. I am breaking down daily it seems,  never in front of her, but I am coming apart. Would love to heard what you think about what she is experiencing right now and anything to help me understand is appreciated.  This freaking sucks.

[Tom Galli]

Leah,

Indeed, lung cancer in any form does suck!

From your post, I deduce your mom's received first-line standard of care for her SCLC along with preventative low dose whole brain radiation. If surgery was ruled out, then your mom received the best care available.

To your point of cure/survival rate, we don't use the term cure but rather strive to achieve a no evidence of disease (NED) state.  We use this term in the lung cancer community because all forms of lung cancer recur frequently so the battle is not often one and done. I had four recurrences after treatments produced a NED state.

From my reading and experience with folks who've received whole brain radiation, your mother's symptoms are not unusual.  I'd ensure she has a brain scan scheduled sometime in the near future to rule out a metastasis.  Unfortunately, a brain met (our lingua franca descriptor for metastasis) might include some of her symptoms.

I read there are a number of clinical trails exploring the effectiveness of immunotherapy against small cell lung cancer.  Since we all face a high recurrence rate, it maybe a good idea start questioning your mother's doctors about second-line treatment.  In particular ask about the possibility of your mom joining an immunotherapy trial.  Since you live in Ohio, you might want to contact the National Institute of Health (NIH) in Bethesda, MD.  They have a vibrant and unique clinical trial process for lung cancer and may be able to tailor a trial to address your mom's situation.  They are doing exciting work in adaptive T-cell transfers with both promising and fruitful results.  Email Jan Pappas at jan.pappas@nih.gov  Just explain your mom's diagnosis and treatments she's received. If the NIH has a trial treatment protocol, all treatment cost is at no cost including her travel and lodging.

Clinical trails today are not a "last ditch" treatment method.  Fortunately, lung cancer research is now leading the way in discovering and fielding new targeted therapy and immunotherapy methods to the patient community.  There are many in LUNGevity who are long tenured survivors as a result of their experience with clinical trials.

You are most welcome here.  You'll have many questions and this is the place for those.

Stay the course.

Tom

 

[BridgetO]

Hi Leah,

I'm sorry to hear that your mom has had lung cancer. I don't have much knowledge of SCLC, but from what I know about it, Tom's advice is right on. I especially like hs suggestion about clinical trials. Your mom's exprience of being strong through treatment and then becoming angry and depressed or upset in some other way is not at all unusual. A lot of us keep on cranking through treatment and afterwards have a big letdown. We no longer know what to do with our days, previously spent concentrating on getting through treatment. We no longrer have the structure and support of frequent, sometimes daily, contact with our treatment team. We now have time and space to think and the thought is often "now what? I had cancer and it could come back!". Sometimes people we know think that now treatment is over, we should be able to get on with our lives, but it's not that simple. I think of it as post-treatment depression, kind of like post-partum depression, but no"baby".  This is a first step toward a new normal, which can never be like the old normal. 

About statistics--they can really be scary. But every person is a case of one. We can't know what percent we fall into. There's a famous essay by Steven Jay Gould about this. Here's a link to a You-Tube about it: https://www.youtube.com/watch?v=cH6XuiOBbkc  ( I didn't mean to imbed the actual video here, but can't seem to get rid o it without deleting my post, sorry! )

All my best to you and your mom. 

Bridget O

 

 

[Leo]

I have experienced similar. I had few if any symptoms prior, during and following treatment. I had PCI (preventative brain radiation) and that was also relatively uneventful though more fatigue . On May 15 I suddenly began experiencing extreme fatigue and nausea and could no longer keep up with my exercise routine which was pretty aggressive. I also began having some balance problems. I was stunned how fast this came on...literally overnight . They did A CtChest , Brain MRI, everything was fine (I had last been tested on April 23 ). I was put on Prednisone for 3 weeks. While I am on the mend again after about 3 weeks.I'm still not back to 100% ...progress is slow currently but it’s progress. I’m back to exercise though not back to where I was. My appetite has improved and I’ve stopped losing weight. They believe it is effect of brain radiation treatment , pnuemonitis (lung inflammation) and late effects of chemo radiation. I had the same fear that it was a relapse which thankfully it was not and my test results have been stable to improved. My next round of surveillance testing will be in late July. Not sure this helps but thought I’d share. PS I was diagnosed in Oct 2017 SCLC Limited Stage and have been NED since mid/late January 2018.