My Dad was diagnosed with Stage 3 small cell lung cancer at the end of May, 2016. It was found in his right lung, and in a lymph node in his neck. He has finished his rounds of chemo. He had a brain MRI done about 2 weeks ago and it thankfully came back that it hasn't spread to his brain. We have a CT scan on Dec. 13th to see how his body responded to the last rounds of chemo. We are praying for good news.
Our problem is, my dad's oncologist ( which we've switched now), told him during his last session that he shouldn't expect to live for more than 6 months ( June), with his cancer. This has him feeling extremely depressed. How can I help? I have tried staying very strong for him, and told him that statistics aren't everything. Is there any small cell lung cancer survivors out there to shine some light? Thank you.
~Lesley
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Lesleykay21
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I'm sorry to hear about your father. You did well by letting him know that statistics aren't everything. Remember, surviving lung cancer should be the expectation, not the exception. Providing hope and encouragement is the best thing to do in these situations.
The first suggestion I have is to view some of the resources available. Here is great place to start freetobreathe.org/lung-canc...
Also, we have a support phone number that you can call in order to speak with someone in person. FtB_Peggy is the person that will take care of you there, and she is great! We are here to support you and your father.
I know you haven't received any responses from survivors yet, but hopefully you may see some in the next day or so.
I was diagnosed Sept. 2015, with stage 3B NSCLC and underwent Chemo and radiation. I return for my third three month followup appointment 12/6 and am praying the cancer is still in remission.
The last thing your Dad needs to do is give up. He has to try to stay as optimistic as possible. They have come a long way with cancer research, but a lot of his quality of life is up to him.
Is your dad being seen at a teaching hospital? If not take him to one for a second opinion and perhaps switch his care. If there is not one easily accessible to you they can recommend treatment and your local hospital can administer it.
You're right. The dr has only given him the worst case scenario. Currently there are clinical trials in progress for sclc that are testing the immunotherapy drugs. Perhaps he may want to consider one.
Dana Farber is an excellent facility. I don't like that the dr said that though. Life expectancy is a guess at a bell curve that has plotted the results if tens of thousands of patients. There is no way to know where he will come out on that curve in . My dr told me 10-15 months 6 years ago.
I'm glad you switched. At that up coming appointment ask about clinical trials.
I AM A SURVIVOR AND THRIVER! I too was diagnosed Stage 3B in 2011. You do not indicate how your dad is doing at this point since his last round of chemo but I already see a silver lining. One doc said 6 months and that was in June? Tomorrow it's December and it sounds like dad is still fighting - 6 months....hooey....!! Statistics are for statisticians and those whose job is to try and make predictions. Survivors and Thrivers work for one day at a time. I found it interesting that your dad's next PET scan is December 13 because that day is important to me as well. I will be thinking about and praying for the dad of "Lesleykay 21" because that day will also be my next PET scan. Why is December 13 so important? Because I anticipate a clear scan and on December 15th plan on announcing that I am 4 years NED (No Evidence of Disease). The doc's originally gave me a grim prognosis; but after each successive clear PET scan; my reply to the doc's and my personal mantra became "POSTPONE THE AUTOPSY!" I am an old guy and I suspect your dad may be - well - a "seasoned veteran"? I suspect his road in life has not all been a bed of roses? Tell him from this old man that all those speed bumps we overcame along life's journey just prepared us for this next hurdle. Keep fighting good sir and throw those damn statistics out the window!
Wow- thank you so much for your kind, inspirational words. It almost gave me goosebumps reading that! To answer some of your questions, his condition right now is fairly good. He has lower energy ( because he just ended his chemo), and he does get a little nauseated at times. My dad has been through one heck of a life, he lost his wife ( my mom) when I was 4, and ended up raising myself and my twin sister and my brother. He is an amazing dad, and he is my whole world.
The original ' 6 months' prognosis discussion came up this month ( Nov 16th), when he asked his doctor how he was "doing". She told him that it probably spread to his brain by now, and he should "enjoy Christmas with your family, and you will not be here by June". For him- this was devastating news. Because we were so curious if it had spread to his brain, we did an MRI that day, and thank god it hadn't. I'm so glad to hear you had the same condition as my Dad. Did you have radiation as well? I'm praying that my Dad's scans come back good on Dec. 13th, and that the tumors have shrunk and not spread. ( my biggest fear). My dad's name is George Kittredge and I'm Lesley! Please keep my Dad in your prayers Cliff, as I will for you. We hope Dec. 13th is a great day.
My prayers for your dad and you too lesly. Your dad is lucky to have such a wonderful caring daughter. Your dad is going to be fine trust the ultimate great physician, our Father God!!!
I had 12 rounds of chemo and 40 rounds of radiation over a 22 month period. Yep - it will kick your butt harder on some days than others. Does not surprise me that your dad has a "story". I have heard many similar over the 5+ years since my original diagnosis. Weak souls don't get cancer! The cancer not having metastasized to the brain is indeed good news. With a stage 3B - the chemo will come first to try and kill off any of the cancer that may have spread to nodes or other areas. With some good results, it can then be narrowed down to the tumor in the lung itself and that can be attacked with radiation. Not an easy road by any means but according to what you told me about your dad, there is that old adage; "this is no hill for a climber!" Your dad sounds like he could scale mountains. Tell George that Cliff from Florida is rooting for him and more importantly that there is an almighty GOD who is STILL in the miracle business. I AM PROOF!
I read our conversation to my dad. He seemed to have a little bit of a " light" in his eye. Stories like yours are what keep me going- keep "us" going! Was yours small cell too?
No - mine was not small cell. However, as I make my rounds monthly to visit and encourage cancer patients at various treatment centers; I know several small cell survivors as well. Focus on muscling through the treatments and GETTING WELL - not on a "name."
What a sweet and uplifting reply to leslykay for her dad. God bless us all and give us strength, encouragement and people like you to help us overcome our condition. Thank you.!!!
g8rcliff, Hello and thank you for your comment. You write well. I, too, am one who is cautious when it comes to statistics. I have had breast cancer and underwent a double mastectomy, and three bouts of small cell lung cancer. Currently being treated with Keytruda for the small cell lung cancer. So far so good in regards to treatment and side effects. I have had headaches (one of the side effects), but nothing too bad. Chemotherapy was very hard on me. I will be going for my third infusion of Keytruda in a few days. I am not going to let this beat me. I have great hope in the Keytruda and my doctors. You will be in my prayers for a clear scan and four more years of success.
Kathie - YOU ARE A WARRIOR! You have been through a lot already and you did that by taking it one day at a time - one battle at a time. Continue on that trek. None of us; including all of those NOT battling cancer; are guaranteed another hour let alone another day. Win TODAY! Then when you wake up tomorrow - WIN tomorrow. I put a little different spin on a popular phrase about "worry" - my spin? "Today is the tomorrow that I planned on winning yesterday." All of this is in GOD's hands.
Hi Cliff! I'm feeling nervous for tomorrow for my dad. We do his scans and we get the results tomorrow. Thankfully we already did the MRI already, ( all was clear). I know tomorrow is important for you too. Although it's hard for me, I'm keeping my faith that tomorrow will bring good news for my dad. How do you keep composure the day before these scans?
Doctors should not give you a prognosis. I was given a year in December 2014 and still here. It's important to be positive because one's state of mind is powerful and will impact your fathers recovery.
I was diagnosed with stage iv lung cancer also in the lymph node, i did 30 rounds of radiation therapy and chemo, had catscan done on monday yesterday the Dr. Was extremely happy the tumor in the lymph node had shrunk extensively we can now focus on the other tumors in my body, will start new chemo next Friday things can a will change just keep up hope.
Keep up the great work! Your strength and positive attitude can be contagious - let's hope your Dad catches it!
Honestly, as you know, you simply can't predict - each person's body is unique and treatment for this disease alters daily.
Hope is around every corner.
Bless you for caring so much, you are a gift to your Father.
If you would like some resources on good support groups, please let me know - I'll get that to you. Also, we have information on financial assistance, etc., so don't be shy - I love to share!
Please keep in touch with us, and know we are thinking about you!
Shame on the oncologist!! I had upper right lobe removed with nothing in nodes. I am 65 and active, did not have a clue, just scratchy throat that would not go away. Mine was almost Stage 2. My oncologist told me I have a 20% chance of it coming back in 5 years in the bone, brain or liver. I will have CT scans every 3 months for two years and then every 6 months for 3 years. Please be aggressive with your oncologist for answers, you are an advocate for your father's health!! Best Wishes..
Thank you tzfarr. It's been a rollercoaster. Sometimes I feel when I ask questions they get annoyed with me, like i'm trying to "play doctor". But i'm only trying to get as much help for my Dad as possible.
Lesley, I am also the daughter of a fighter, always searching for answers and support.
My dad, age 68, was diagnosed almost a year ago with Stage 4 NSCLC. The only time the doctor gave my dad a "prognosis" was when he questioned whether or not he was going to do treatment at all. They told him 6-8 months without treatment and it helped my dad make the decision that he just wasn't ready to leave us that quickly! He started treatments and has been on several different chemotherapies, and trialed immunotherapy.
My dad has his moments of fatigue, has lost over 20lbs, and has some days that are better than others. We live Day by day because we simply don't know what the future holds and now that he has been getting treatment the Oncologist would never "predict" anything either.
I am so sorry you are all going through this but you are in good company here and I highly recommend reaching out to FtB_Peggy she is extremely helpful and a wealth of knowledge. We put our faith in these doctors because we are not armed with the knowledge to know any different, yet we still question what their decisions are. Peggy has helped me increase my knowledge of lung cancer which has in turn helped me understand the methods the doctor uses to treat my dad and the reasons behind it and be able to ask appropriate questions.
Don't hesitate to reach out to me if you need support or someone to talk to...my daddy is my whole world too 💙
Thank you very much for your response. It sounds like we have similarities in our stories. Sometimes I wonder why my dad had to be the one to get this horrible cancer. I always thought we all had guardian angels that would prevent something as devastating as this happen to us. I know that they are still working to help us everyday to get through this. It kills me to see my dad go through this. We're praying for a miracle so that he can be apart of more events in our lives. I will pray for your Dad and I'm glad to know there is others out there going through this. It's very tough. Thanks again for your response!!
Thank you for your beautiful words and support for Lesleykay, Jess. You are so dear.
And thank you for your kind words, Free to Breathe is a great place to work - I get to know some truly wonderful people like those on this thread. I am so very, very blessed.
Hope you all have a cozy, comforting day. And, yes, Dads are the best, I loved mine like crazy too. He deserved it.
Lesley, I am sorry to hear about your father and his treatment for small cell lung cancer. I, too, have small cell lung cancer that has returned for the 3rd time. I had chemotherapy and radiation with the first diagnosis. About 6 months later I had a recurrence and was given only chemotherapy. I am now on my third recurrence and my doctor is giving me immunotherapy called Keytruda. I had my second infusion on Monday. I have had no ill effects from the Keytruda thus far. It can cause headaches, diarrhea, rash, constipation. My small cell lung cancer was diagnosed about 1 1/2 years after breast cancer. I had a double mastectomy and so far no recurrence of the breast cancer.
I didn't mean to make this so long and apologize for that. If you have any questions about the Keytruda, please let me know. I'll do my best to answer them.
Hi Lesley, Thank you for your note. Yes, please contact me any time. Anything I can do that might be helpful would be great. My best to your dad. Have a wonderful day.
Good morning Lesley, I forgot to give you my email just in case you may want it kate93105@msn.com You can also message me on Facebook. Have a good day.
I'm a 6 year Small Cell lung cancer survivor. It was limited. I'm confused I was told there was limited or extensive. Did they change the staging? Read my bio for the treatment stuff. Positive attitude went a long way for me. Prayers for you and your dad. Keep on fighting!
Hi Ericsgmom. I'm not sure if they changed it. When he was first diagnosed they said it was stage 3b. I also thought it was limited and extensive based on the literature I've read. My dad is in his second week of radiation. I hope it helps rid the cancer from his chest and brain. Prayers needed.
Greetings Lesley, My dear sweet husband was diagnosed with small cell lung cancer 12/15 and we were told that he only had about 6-10 months. He responded well to chemo, but his cancer came back within two months after he finished treatment. Then he started radiation to his brain and then his chest before starting Opdivo. This drug kicked this cancer’s butt! He currently is off Opdivo though since this medication ramped up his immune system and it is attacking his lungs. He is on steroids and we go back for scans at the end of this month. This journey has brought us together with so many amazing people. We now have a whole new amazing family we never knew before.
Thanks for sharing your story. It's very inspirational to hear sucess stories. Did your husband ever get sick from radiation? My dad has been throwing up. So strange.
No, He never got sick at all. Neither chemo or radiation. What chemo was your dad on? Where is he being radiated? Chuck had radiation to his brain and his whole chest area
He is being treated at Dana farber in Boston. He had the two kinds of chemo, cisplatin and etoposide. His nausea has subsided. He spoke with his doctor about his diet.
Those were that same meds Chuck was on. He was on them from 12/15 until 5/2016. When he went back for his 2 months scans after he finished these meds, the cancer had spread to his brain, as well as his liver and lymph nodes. He started back to back radiation. First to his brain and then to his chest. The same month he was getting his chest radiation, he started Opdivo. His cancer really responded to this drug, but unfortunately this drug ramped up his immune system to attack his own lungs. Now he is off all Opdivo and is on a heavy dose of steriods to try and counter act the immuno therapy issues. We go back in two weeks for more scans. He has not have Opdivo since before Christmas.
Hi there. Thank you for your insight and information. How is your husband feeling overall? Does he have a cough at all? We go for scans in a couple of weeks to see where things are at. Very stressful.
Chuck is doing great! He had some tummy trouble two weeks ago, but other than that, he has felt wonderful. We would not know that he was having a reaction to Opdivo without his last scans. He has no cough to speak of. Nothing like he used to have when his cancer was soaring.
I do agree with you that scans are stressful. We go back the end of Feb. Where are you getting your treatment? Are you happy with your treatment.? How is your dad feeling now?
I'm glad to hear that your husband is doing well. My dad is getting treated through Dana Farber in Boston. He goes to an affiliated hospital for radiation so he doesn't have to make the drive into Boston. We're happy with the treatment because we're happy that my Dad is still with us. Although, the worrying never ends. We're nervous that it will spread, especially since it has already gone to his brain. Thankfully it was the size of a pea, but still makes me concerned that it will spiral out of control. He just finished his chest radiation today, and he has 2 more sessions on his brain. We will have scans at the end of the month as well. I'm so nervous for that they will find. I'm praying for positive news.
Also- you asked how he was feeling! The radiation makes him very tired, and it did cause some nausea. He said that he feels a little unsteady on his feet, but he is not bed ridden. He goes out to the store, he says his breathing is fine. Besides him coughing- and occasionally feeling like crap, you wouldn't be able to tell he has cancer.
Hope all is going well. Please remain positive your Dr doesn't know how long you have. Keep believing in yourself. I have small cell lung cancer with mets to lymph nodes. I believe there will be cure for this evil disease
I have been gone from this blog for many months now. I had a compression fracture of my spine and am still recovering. It is very painful. I was not able to sit at my computer for months. I have, however, been able to make my infusions every three weeks thanks to my sons. It's been a difficult journey and I am through the worst with my back. Still need pain medication a few times a day.
How is your dear dad doing? I hope he has his new doctor and is being treated with the new immunotherapy Keytruda. Please let me know how you are doing too. Your dad is so luck to have you by his side. Prayers to you both.
So good to hear from you. I'm sorry to hear about your back issues. I'm glad you're doing a little better and have been making your infusions. How are they working?
My dad isn't on keytruda . He had major bad inflammation from the radiation to his chest- he had a very hard time breathing and was hospitalized for 2 weeks. During that time they did a scan on his lower abdomen and found 2 spots on his liver that it spread to. He's pretty weak, so they put him on chemo only one day a week to keep it at bay- then he might do a clinical trial. They also said keytruda is 10k a treatment so they seem to be concerned about that too. Still holding out hope and faith. All I can do. Hope to hear from you!
Lesley, So sorry to hear all the difficulties your Father is facing right now, I know this is very hard on both of you. I hope he soon regains his strength and will pray that his medical team comes up with a good plan. Hugs.
Hi I’ve just read all of your posts. How has your dad been my mum is going through this and just fineshed all her treatment and has a scan in June. Please reply. Thanks x
Sorry I didn’t respond sooner! I don’t go on as often as I use to! How is your mom doing? My Dad unfortunately passed away about a year ago. However, everybody is different and everybody responds different to treatment, So stay positive and ask a lot of questions to your moms care team! I’m thinking of you and your mom! 💕
Lesley. I was diag. w/sclc Dec. of 2015. I have gone to Cancer Treatment Centers of America in Zion, Ill. since day one. They have been fantastic and i have no sign of disease. A true blessing. I recommend them even for a second opinion. Chuck
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Small cell cancer with complications
SMALL CELL LUNG CANCER INFO NEEDED 
CANCER IS BACK....AGAIN
