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Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by danielday on Feb 5, 2019 9:12 pm

My mom got officially diagnosed with stage 4 small cell lung cancer today and will start chemo tomorrow. No symptoms up until December 2018 when she got pneumonia. After many diagnostic tests, we learned today it's a stage 4 small cell lung cancer.

It's as bad as it gets. But I am optimistic she will respond well to treatment and I am optimistic she'll beat the odds. She's my mom, after all, and I don't want her to die.

Are there any other patients in similar situation? What helped you? How long have you been on treatment? Please tell us your story. 

I am still shaken by all this.

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Brighty on Feb 5, 2019 10:11 pm

danielday‍  I just came across your post and wanted to welcome you to cancer connection.     This is a place where you will get support from others as well as information and/or just a place to vent.     I'm sorry about your mom's diagnoses.    It's always devastating when a family member gets a cancer diagnoses.     Good news is that lung cancer treatments have come a long way the last few years.   I'm going to tag a few people on the site who may be able to help you.    jorola‍   Cynthia Mac‍  who cared for family members with lung cancer.     As well I will tag Tyka‍  WestCoastSailor‍  Lee Ellen‍  who might share a similar experience to what your mom may be experiencing and can give you some pointers.      I hope this helps a bit.    

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Rosie39 on Feb 6, 2019 8:04 am

Your Mom’s diagnosis is similar to my own. Mine was detected January 2018 by a chest X-ray . Pneumonia was discovered as well as a spot on my lung, non operable.Stage 4. I began treatment in March. Radiation and chemo. I was able to keep up with yoga classes and walking. My only side affect was at the end of treatment. I had severe radiation burns. They were painful. It took me a few weeks to get over the fatigue and recover from the burns. I can only say I feel better this January than last. The pneumonia was brutal. I have been placed on  a drug Tagrisso. It is to prevent the cancer from spreading.I see my oncologist today to get the results from my last scan.Staying active helped me during treatment. Prayers for your Mom. 

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Cynthia Mac on Feb 6, 2019 8:42 am

Hi, danielday‍ , and thanks Brighty‍ for tagging me.

I’m my Dad’s caregiver. Dad had non-small cell lung cancer last winter, treated by surgery and chemo after. 

The first thing I want to tell you is that everything you’re feeling is normal for someone who has just learned that a parent has a serious disease.

On Cancer Connection, you can read other stories about specific cancers. Under Forums (on the bar with Discussions, forums, groups), select Forums, and on the page that comes up you will see a bar on the right side of the screen with specific cancers. As you scroll down the page you will see Lung, and when you click on that, you’ll be taken to a list of discussions about lung cancer. You can also read through the caregiver section - that might give you some understanding of the role of the caregiver.

Every cancer “journey” is different - two people with stage 4, small cell lung cancer could have completely different treatment regimens - one might have surgery then chemo and radiation, one might have chemo first to try and shrink the tumour before they operate. Reading about others’ cases will help you understand the process, but it won’t necessarily tell you what your mom will have happen in her case.

How active will you be in the role of caregiver? My best tips for you are to take care of yourself (including getting enough sleep), try and stay organized so that you make all the apppointments on time and with the right “tools” you’ll need (chemo blankets, medication lists). I started a coil notebook for Dad with tabs, and  used one tab for medical team contact info, another for appointments and requirements for the appointments (eg., no food after midnight), and another for questions for the doctors. My third tip is to try and keep at least a bit of “normal” in your caregiving life. If your mom is having a good day, and can be without you for a while, say, “OK, I’m going to go have a beer with the guys” - or watch the hockey game at home tonight, or whatever will give you a break from all the “cancer talk” for a couple hours.

Cancer Connection helped me understand I was not alone, and that we can all get through this. I was at a workshop a couple weeks ago, and one of the quotes presented was, “So far, my track record for getting through bad days is 100%.” That one really stuck with me! So, I hope this place helps you, too.

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by WestCoastSailor on Feb 6, 2019 7:49 pm

danielday‍ 

I have NSCLC (Non Small Cell Lung Cancer) Stage 3C. When I was diagnosed last May it felt like a death sentence. The median survival rate was 17 months. I went through chemo/radiation and am now on a new immunotherapy - Imfinzi. If I didn't know I was sick - I wouldn't know I was sick. Spirits are high.

If it is Stage 4 then it has metastasized somewhere and that often determines the prognosis.

Regardless. As others have said this is a disease that will drag you down if you let it. I have found exercise, rest, good diet, and relationships to be critical in handling the disease. Relationships are where you come in. Make what time you have good. Enjoy the small things. Stay in the moment. Feel pain when you need to. Then remember that life isn't about that and move on. Create memories.

We are here. Stay in touch.

Angus


 

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by danielday on Feb 6, 2019 10:31 pm

Dear BrightyRosie39Cynthia Mac and WestCoastSailor. Thank you Friends.

I went to BC Cancer Agency (hospital) where my mom received her first chemo today. She is visibly better. She felt burning sensation and a bit of shortness of breath in her lungs while receiving chemo, but she didn't complain. After 1st chemo, she is 100% better. Her voice is now normal. She regained strength. She was in a really bad shape last night. Today, after chemo, she is doing great. She will have another chemo tomorrow and then another the day after tomorrow, and then she will have 21 days rest. I believe she may receive radiation in 3 weeks, but she is already doing so much better. 

Brighty, thank you so much for your kind words and for tagging other people in similar situation. I will make sure to read their posts. And yes, it helps a lot. If you're dealing with cancer, please update me how you're doing?

Rosie39, I am glad you feel better today than you felt a year ago and I am glad that you're active walking and taking yoga classes. My mom was told to stay active, it helps recovery. Thank you so much for your kind words. Prayers for you, too. Please update me about your progress. 

Cynthia Mac, I am sorry for your dad and I hope he is responding well to cancer treatment. Please update me about his progress. I will be 100% active in helping my mom with whatever she needs. Every cancer patient deserves all the help she/he can get. Thank you and hope your dad gets well.

WestCoastSailor / Angus, most people don't know they are sick until it's too late. I understand how you felt when you received the news. Cancer is a silent disease and in many cases, no symptoms show up until later stages.Hope you're getting better. Please update me about your progress.

Words of encouragement for Cancer Survivors:
In the avalanche of negative news, hold onto something positive. No - cancer is not a death sentence. Every person's response to treatment is different. We have come a long way in the treatment and we're pushing boundaries of human survival.  "There is no cure for cancer" does not mean death sentence. Also, there is no cure for Type 1 Diabetes, there is no cure for HIV/AIDS, yet people live by managing disease.There are thousands of Stage 4 cancer survivors who are still alive 5, 10 years after diagnosis, and we are pushing limits of human endurance every single day, and as time goes by, we'll see survivors live longer and longer. Cancer treatment has gone a long way. Eat well & healthy, exercise, stay positive, avoid unhealthy habits, follow your doctor's treatment recommendations... we can do this. Never, ever, ever, ever give up on yourself. 

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Cynthia Mac on Feb 7, 2019 7:50 am

danielday‍  - oh, did I leave that part out? Dad is well. He just had his 1 year, no evidence of disease check. He still complains of low energy levels from time to time, but he’s also heading toward an 80th birthday. Knowing what I know about my energy levels at my age, I’m thinking that 80 might have something to do with his.

I’m happy to hear that your mom is doing better already - I find that there can be a sense of determination hit once the action plan is up and running. Keep yourself prepared, though - chemo has a cumulative effect, and she may have days ahead when she doesn’t feel as good as she did after today’s treatment.

Your mom is so fortunate to have a son who is so caring and active in her treatment. I’m absolutely certain that she appreciates this more than you will ever know, because it’s hard to express that much gratitude!

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Brighty on Feb 7, 2019 11:20 am

danielday‍  thank you for your post and I'm so glad your mom is doing  better already!! Please keep us updated! !!  

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by jorola on Feb 7, 2019 7:18 pm

Hello and welcome danielday‍ 
My apologies for my delayed reply. I was out with hubby watching him playing in his pool league last night 🙄
I am sorry to hear of your mom's diagnosis. It sounds like she is already benefiting from treatment. My hubby had non small cell stage 3b however I had an aunt and an uncle that had small cell lung cancer. Non small and small cell are very different from each other. You are very right; lung cancer it is usually not found until the later stages as there are little to no symptoms until the late stages.
If you haven't seen this yet I am linking you to the Canadian Cancer Society's page on lung cancer below
Lung Cancer link
Are you helping with caregiving? Are there others helping as well? Cynthia Mac‍ has given some solid advice. I would only add in teamwork and good communication within that team is crucial. The more everyone can share the work the easier it is on everyone and the less likely someone is to burn out. Caregiving is hard work - mentally and physically. If one does not care for themselves they end up not being able to properly care for either their loved ones or themselves.
We are all here if you have questions or just need a place to come talk.
Take care ok?
Jodie

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Lee Ellen on Feb 9, 2019 5:10 pm

Hi, danielday‍ 

I apologize for taking a couple of days to respond, but I was in chemotherapy three days last week and am feeling the fatigue and "chemo brain" that seem to always accompany and follow such therapy.

I have limited-stage small cell lung cancer, and am being treated with carboplatin and etopocide. Twenty years ago I helped as my dad's caretaker when he was diagnosed with inoperable pancreatic cancer, so I've seen cancer from both sides--that of the patient, and that of a caretaker. 

Looking back at my months taking care of Daddy, and looking at what my husband is going through taking care of me now, I have to emphasize what others have said, that it's very important that you take care of yourself; your mom's journey through therapy will be very taxing on the both of you, and if you're not feeling fairly rested and energized, you won't be able to help her through it. Make sure that you spend some time each day doing something that's just for you.

I hope that your mom responds well to the chemotherapy. Make sure that she always has a bottle or glass of fresh water on hand, as she'll recover more quickly from the chemo if she stays well hydrated. Also, see whether she would be willing to try using edible cannabis products to help with the side-effects. Cannabis is a wonderful supplement to the anti-nausea drugs I'm sure her oncologist has prescribed, and doesn't interfere with treatment; also, it helps with loss of appetite and with insomnia.

Best wishes, Lee Ellen


 

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by danielday on Feb 9, 2019 11:20 pm

Hi jorola / Jodie,

Extensive-stage small cell lung cancer appears to be the most serious of all cancers. 
If I could give my mom half my lung, I would do it, but unfortunately that's not the option.
There is no justice in this world. Absolute no justice. She does not deserve this.

Yes, I am the only caregiver.
There is no one else, but I am glad I can help her. 
I am trying to stay positive. I am looking for positive information and I am trying to hold onto positive, rather than negative news.
Negativity can be very destructive for anybody's well-being.

Thank you for your kind words. Take care and stay strong.

 

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by danielday on Feb 9, 2019 11:31 pm

Hi  Lee Ellen,

I understand how you feel. My mom had 3 days of chemo and today (1 day after chemos) she feels very tired, but she ate a bit more than yesterday, so that's a good news. I just wish she ate more, but she is doing the best she can. She drinks water, and I keep reminding her to continue doing so. As you mentioned, staying hydrated is important after chemo. 

There has been little progress in treating small cell lung cancer, but that may change. After 30 years, they came up with 1 promising drug in clinical trial https://cancerconnection.ca/discussions/viewtopic/68/60826. It's sad that virtually no research was dedicated to SCLC until now (or perhaps I am missing something).

May I ask, how long have you been living with this chronic disease? Are you getting better? 

Best wishes Lee Ellen. Stay strong.
 

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by jorola on Feb 10, 2019 12:11 am

Yes danielday‍ I have seen more than I wish to about sclc. I have said before it is a beast of its own.
I can tell your Mom means the world to you and I am sure she not only knows it but feels the same about you. You and Mom are the main team but you can still gather others for help and build up your team for help to ensure your Mom and you are both getting the care and rest you need.
Here's another link to help find resources for both your Mom and yourself
http://csl.cancer.ca/
Stay well. I know you will do your best by your Mom but remember you are not superwoman and no one should ask or expect you to be - including you.
Jodie

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by Cynthia Mac on Feb 10, 2019 8:43 am

danielday‍ , I agree with jorola‍ : you are doing tremendously by your mom, and I, too, encourage you to seek out some additional resources that will give you some time for yourself to “recharge.”

I’m also 100% on side with you about the power of positive and negative thinking.

Lee Ellen‍ , My Dad searched out some edibles, too, when he was in treatment, and he said they helped as well, with appetite and also to a degree, his pain - Dad has a chronic neck issue, so it was good for him to have a little relief from that while he was going through cancer!

Re: Extensive Stage Small Cell Lung Cancer (SCLC), Stage 4

Posted by danielday on Feb 19, 2019 4:35 pm

Just an update guys to let you all know that my mom is doing great. I hope you all are doing great too!

If my mom becomes resistant to chemo, there is a new immunotherapy that was FDA approved in August 2018. It's OPDIVO (Nivolumab). Tecentriq (Atezolizumab) also extends survival in SCLC patients. Also, recent studies have shown that anti-inflamatory drugs can combat lung cancer; they can shrink tumours by 50% within 5-7 weeks. Why not add antibiotics and/or anti-inflamatory drugs to treatment at some point? We have the studies, we know it's working, we should use everything at our disposal to fight this disease. There are many other things that can be done.

I have decided to reject the possibility that SCLC may take my mom's life. I don't accept it anylonger. I reject it. We're going to get through this.

According to the 17th World Conference on Lung Cancer (WCLC), "Small cell lung cancer (SCLC) patients with extensive-stage disease can achieve long-term survival." (median survival of 5.4 years is possible) https://www.medscape.com/viewarticle/873492

How about not dying from SCLC?
Do I believe in miracles? You bet I do.


Non-convential treatments? Sure. Whatever helps. Use it. 

When you're at war, use every weapon at your disposal. And never, ever give up. Fight with sticks if you need to, but don't give up.

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