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SCLC

nomadawn68
Posts: 10
Joined: May 2006

Hello, My mum has been diagnosed with extensive SCLS .She has been told it is inoperable. She is to start treatment with carboplatin and etopisode. Has anybody got any experience with these drugs? Also, is there any success stories regarding SCLC as I cant find any at the moment and the future looks very grim. I am just looking for a glimmer of hope as this is very difficult to deal with.
Thanks to you all & god bless xxx

LisaAnn33
Posts: 8
Joined: Jan 2007

My moms has SCLC, was diagnosed September of 2006. She's 50 yrs old, she went through 6 cycles of chemo, cisplatin and etoposide. It was a nightmare. She really had a hard time with chemo. Now she is walking around. She can't drive and she had to stop work completely, she is on disability (which she had always been healthy her whole life). I know when you read the internet it seems like SCLC is a death sentence. So far my mom is around, eating, walking, doing okay. I'm hoping my mom will live five years and beats those odds, and I hope the same for your mom. Keep us posted on how she is.

Lisa

nomadawn68
Posts: 10
Joined: May 2006

Hi Lisa
Thank you so much for your reply. I am sorry to hear about your mum having this terrible disease but I am glad to hear she is now doing ok. My mum starts her chemo tomorrow and I am so worried about how she will cope. She is not too bad at the moment just tired with a bit of a cough. I too hope that both our mums beat the odds and I will be praying for them both. Hopefully we can keep each other posted on our progress.
Best wishes & god bless
Debbie
xxx

handle
Posts: 31
Joined: Feb 2006

hi, I have sclc, and am in remission for six years now. I was given a 5% chance of survival, inoperable. I started with cisplatnum and vp-16 (etopisode). I would ask why not cisplatnum, it has a better response if your mom can handle it. I had problems my second cycle with it and was switched to carboplatnum, vp-16, and also taxol. I am disabled but am doing pretty well . The tumor is still present , it is just inactive. It was very large, in left lung, on lung, in lymph nodes, wrapped around aorta artery and pushing against my esophogus. It has shrunk to the size of a large walnut and is not active, just there. I also had six and one half weeks of radiation to my chest, side and back, five times a week. They started the radiation after they got the tumor small enough to get into one port of radiation. I hope this helps some and if I can help just ask. Take care and God bless , Mike

nomadawn68
Posts: 10
Joined: May 2006

Hi Mike,
Thank you so much for replying to my message. I am so glad to hear your success story. My mum had her treatment 3 days ago and so far is just a little tired. I would like to know how you were with the treatment. Did you have any symptons pre treatment? My mum has tiredness, shortness of breath and occasional pain in back - manageable at the moment thank god. She still gets about ok and does some housework. Did you find the treatment hard to tolerate? Also, did you change your diet at all - supplements or such? Sorry to bombard you with questions but I really want to know what to expect and help my mum as much as possible. Thanks for your time & god bless
Debbie

handle
Posts: 31
Joined: Feb 2006

hi, yes I was tired and had alot of side effects from the chemo, lots of vomiting approximatly 10-14 days and then would get my appetite back. I would eat chicken soup with toast, homemade milkshakes, anything I could force into my body. I would be really bothered with smells , would make me instantly vomit. I was a weird patient, at that had alot of side effects from the chemo and none of the anti-vomit meds worked on me. I was always pretreated with steroids and anti-vomit meds , just didn't help me. I started radiation my fourth cycle of chemo and it burnt my esophogus , so anything I would eat , had to be soft, luke warm (not cold or hot), thus chicken soup and toast in it.I started with co-q 10 150 mg's, b complex vitamins, ac and e, and a daily multiple vitamin,and when I asked my Oncologist about taking them all she would say about any of it was, if it is between paying for a bill and taking them, she said pay the bill? Well, I still took them, I really don't know if they helped , maybe mentally, but somehow I think they might have helped and I still take them to this day. I feel good, a little short of breath, but am still kicking and active.As far as food, let your mom eat anything she wants tooo, she will need all the stamina she can muster to fight this damn disease. I would lose approximately 40 pounds after chemo and then put it back on when my appetite came back each cycle. My oncologist was amazed how this worked with me and the dietician told me whatever I was doing , to keep doing it because I was keeping my weight on , even though the up and downs every cycle, and yes I would lose 40 pounds from vomiting and diarhea( sorry for the graphic) , but don't know a more polite way of telling you. Let your mom eat anything she wants and don't worry about healthy foods, she needs food and any food she can force into herself. If she gains weight then great, she has to have the stamina to fight this damn disease, and after she wins she can begin eating healthy , if she wants, I eat healthy now, but what is healthy anyway? All you hear is how everythingl is poison anymore, bad feed for chickens, hogs, mad cow disease, fish have mercury, vegetables has ecoli, so let her eat whatever she wants!! I want you and your mom to beat this damn disease!!! I really believe in the mental part of it, and believe that it is alot of the battle, so try to keep her in the fighting mood.I will keep her and you in my prayers( yes I did that too, lots of talking to my God) and I hope and pray that this has helped answer some of you questions and will help you battle this disease. Mike

nomadawn68
Posts: 10
Joined: May 2006

Hi Mike,
Thanks so much for your helpful & thoughful reply. My mum is doing ok so far. She is very tired and has been sick once but is still eating. Her main issue at the moment is constipation which is making her feel bad.She has also been getting a severe pain in her lower/middle back which comes and goes. She also has slight numbness in her left arm & leg yesterday. I took her to the hospital as I feared it may have been a stroke . They checked her over and said they had no idea what was causing this. I dont know if anybody else has any ideas. She still has the numbness a little today but not as bad. The pains are just occasional twinges at the moment. It seems every little sympton she gets I panic and fear something awful is going on like stroke or cancer spreading. She had a good day today though so I have calmed down a little.
I hope you are well today.
Lisa, how are things with you? please keep in touch. Coming here really helps me and gives me hope and support and I am so grateful for it. I do read other posts and hope that I will be able to help others too.
If anyone has any ideas about my mums symptons I would really appreciate it.
Take care & God bless
Debbie

kristin167
Posts: 3
Joined: Feb 2019

Hi Mike,  my father was diagnosed with extensive stage small cell lung cancer on Sept. 11th. It had spread to his lymph nodes, with a few small tumors near his esophagus. He started chemo and completed 4 cycles (3 rounds each) in Dec. Following a PET scan they said he would need to do radiation on the only spot that didn't shrink (it grew) but other than that everything else had shrunk significantly. It was found no where else in his body (organs, blood, bones, brain, etc.). He was having trouble breathing, very short of breath, and admitted to the hospital. We were told that the tumor was pressing against his esophagus causing him breathing issues. He had to be intubated, and has been in the ICU for 2 weeks. Finally got him up, extubated, and started radiation this week. He's fighting for his life, he's giving it all he has. They will not tell us how much time but they have said he's not going to be cured, which is just awful. They want to start immunotherapy but the hospital will not do it, has to be done on outpatient. Has anyone had any similar story with actual survival? I'm trying to keep hope alive for a bit more time as I'm only 33 and he's only 70 I want more time with my Dad. Thank you for any advice you can offer.  

LisaAnn33
Posts: 8
Joined: Jan 2007

Thank you for your story. You are truly a survivor. I read one of your posts in the past to my mom to inspire her to not give up. Thanks for reminding me that there are survivors of this disease. I hope my mom is the exception to the rule, too. God bless you too.

Lisa

LisaAnn33
Posts: 8
Joined: Jan 2007

The previous message was an old message I thought had been posted. Today, May 11 my mom is doing fine. I agree with what Mike said, to eat anything during chemo. My mom has finished all of that. It's been tough lately because now that my mom is better, she is starting to smoke. She hasn't gone in for radiation yet, and the radiologist told us that the PET scan showed the cancer has spread to her thyroid gland and that radiation may not be of help. Sometimes I think my mom is taking up smoking because she thinks that she is a burden on me and my little 13 yr old sis. I plead with her to not smoke and to take nicorette instead. Anyway that is my update. Take care.

Lisa

GrammyJones
Posts: 7
Joined: Jun 2007

Hi NormaDawn. I was diagnosed with Small Cell Lung Cancer Stage IV in Aug. 06 just a few days short of my 50th birthday and YES i too was a smoker. I was hospitalized and nothing found. Then, 3 months later... I became so sick... extremely high blood pressure, diahhrea and vomiting. Finally, being rushed to the emergency room, they did an x-ray. Soon thereafter, upon having a CT scan, PET scan and biopsy, my nightmare began. It had attacked both my lungs, liver, lymph nodes and bones. Please stess to your mom that she must stay positive. Anyone's world changes forever with those 3 words... "You have cancer!" I previously did chemo (carboplatin and etopisode) every 3 weeks for 6 group of chemo. I was "clean" for 4 months before learning it was back. It has returned to my liver and lymph nodes. My bones continue to be damaged from the cancer... mainly several "holes" eaten in my spine. But amazingly, I feel the best I've felt in well over a year... the cancer has only slowed me down slightly... I won't "give in" to it! I am again doing chemo along with additional injections for my bone pain. Surgery and/or radiation is not possible due to being so wide-spread. I continue to stay positive... and I refuse to let the cancer win this battle I fight. It's now 10 months since my being diagnosed and I have plans of going no where!!! My doctors have been amazed at my improvements. Prayers are powerful1!! I will keep your mom in my daily prayers! If you ever want to talk, or stress, please e-mail me at MsKissy@lexcominc.net. I've been through it all and, upon coping with it all, I'm able to talk freely about the disease. I'd love to maybe be able to help you through your feelings. God Bless... Vicki

nomadawn68
Posts: 10
Joined: May 2006

Vicki,
Thanks so much for your reply. It is so helpful to me and my mum to hear positive stories and yours really lifted our spirits. Your initial story is similar to my mums. She was very ill, vomit, temperature etc but has never been like that since diagnosis. i still dont know if that episode was related as she is doing quite well now.
I would love to keep in touch and wish you lots of luck with your treatment.
God bless & take care
Debbie
x

JudiCorbin2
Posts: 3
Joined: Feb 2019

I was just diagnosed on February 15   2.2 cm right upper lobe mass with right sided lymph node involvement.  The lymph nodes were extensively involved on the right so much so that they were very concerned about Superior vena cava obstruction syndrome. My neck and face were swollen as the fluid could not drain into the SVC vessel. I was given steroids n had to sleep in recliner to help drain fluid. They started chemo within a few days and after first session I was getting relief   My PET did not show Mets and my MRI brain was negative. I will start radiation next week.  The radiation oncologist says I’m stage III B.   I would like to hear from others how they coped and how they are doing 

hologram99
Posts: 1
Joined: Feb 2019

I was diagnosed 11/2018 with SCLC that spread to my adrenals and lymph nodes but nowhere else, but still inoperable/stage 4. So far I've had 4 rounds of chemo (3 days each), on Dec 30 & 31, my hair was falling out in handfuls, so I had a sweet friend just shave it all off... I have heard from lady friends that I have a nicely-shaped head, that I look badass, etc. I'm also a beanie collector, kinda weird for a guy who never went in for hats before. I ended 2018 with hair and started 2019 bald. Happy New Year, Howard! 

Like others here, I get carboplatin and VP-16. The oncologist never said how much time I have and I never asked, because I know it will start with "People respond differently..." and I won't get an answer... but I know the 5-year survival rate is gruesome and the 2-year prediction is only slightly better. BTW, last November I posed for an x-ray of a total reverse shoulder replacement and sombody didn't like the spots they saw, thank God. I've had a wonderous 63 years on this earth and I'm going to fight for a couple more.... I'm not done here yet. 

Love to all,   Howard from Lancaster, PA 

mick62
Posts: 1
Joined: Jul 2019

just lost my wife on 7/3/ 19 she fought it for 23 months i been having a hard time dealing with her death . I have been so sad and crying alot everything in the house has a memory  of her around it .Does anyone have any advice on handling this grief

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jorola
Posts: 237
Joined: Mar 2016

Time - it takes time and pain. I encourage you to seek counseling one on one or in a a soupport group. Talking about what you are going through, sharing it with others tends to be helpful.

My thoughts are with you.

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Nurse_Jeni
Posts: 8
Joined: Mar 2017

Removed as no longer relevant. 

Ed_dog44's picture
Ed_dog44
Posts: 1
Joined: Sep 2019

Hello,

I was recently diagnosed with stage 4 sclc on july 3, 19. I am goin on round 4 of chemo treatment. Since the first round i have found my leg strength to deteriorate rapidly. I live in a second story home and find the stairs to be unbearable at times. I am taking gabapentin for the nerve pain and Norco 10-325 for the muscle oain. They help a little, but my mobility is making me depressed. I have always been a very active person and feel useless now. I am 44 and realizing this is the how I am going to have to live now. Any one have any suggestions on relieving the weakness in the legs?

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jorola
Posts: 237
Joined: Mar 2016

You are asking a good question here but it is lost on this post. If you have problems with starting your own post, click CONTACT CSN at the very very top right hand corn of the page. Good luck

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