Hi,
My name is Nova.
My husband was diagnosed with SCLC in January, and is getting ready to start his third round of chemo this Friday.
They are also starting radiation treatment this time too.
I was wondering if anyone can tell me what to expect with the radiation being added on, along with the chemo?
After the first chemo, my husband ended up in the ER at the cancer center, very dehydrated.
After the second chemo, he ended up in the hospital for 3 days with an infection.
Needless to say, I'm dreading them adding on radiation, when the chemo alone has already made him so ill.
Any helpful hints you could offer would be appreciated.
They've already told us that his esophagus will be burnt, and it will be nearly impossible to swallow. They'll be using pain patches to control that.
He's lost 30 pounds, lost all of his beautiful blonde hair, had to stop going to work, etc..... I've never felt so badly for anyone in my life :(
Thanks for being here,
Nova

Hi Nova,
My mother had small cell lung cancer. She didnt have the radiation until after she finished her chemo. I can tell you though, in my moms case, she really didnt have bad effects from the radiation. The radiation did affect her esophogus. She drank alot of the nutrition drinks going through radiation. It was easy to go down.Also pudding and things that are soft. I assume your husband will have about 15 treatments? The esophogus didnt really start affecting her until she was into her 7th treatment, and after she finished the radiation it took about a week for her to start really eating. The radiation also left like burn marks on her back.(not severe)They also went away soon after.
Does your husband have extensive or limited?
As you go through this , just know there are people here on this board for you.You are not alone. God Bless you and your husband.;)

Thanks for writing, Serinity.
My husband is supposed to have radiation treatments twice a day, (6 hours apart), for 3 weeks. (Five days a week= lot's of running back and forth to the cancer center!):confused:
They said he would experience a sore throat after about 4 days, and they would prescribe a throat rinse/gargle to help. They said it would then get worse, and he would have to use a pain patch.
I've already bought some Instant Breakfast packets, but guess I ought to buy some Ensure and Boost too.
So far, they say his cancer is Limited. It's in some of his lymph nodes though, and is also outside the lung, pressing against his ribs, and wrapped around the bottom of his heart. His brain scan came out okay, thank goodness.
I noticed you said your Mom "had" small cell cancer..... I'm sorry if she lost her battle with it.
Thanks for answering,
Nova

Hi Nova,
Thats good your husbands cancer is limited. I believe they treat it differently when its limited rather than extensive like my moms was.And yes she lost her battle with this a year ago.She fought a long hard battle.
Just get ready for a roller coaster ride. There are so many ups and downs.Enjoy the ups and pray hard when the downs come.Everyone is so different in the way their body fights the cancer.I pray that your husband is strong and beats this .It can happen. Never give up hope.:angel:

By the way take care of yourself too, I know all the appts. can be overwhelming. Grab one of his nutrition drinks for you on the way out. The chocolate ones are the best:)

Hi Nova,
I am sorry to hear about your husband's diagnosis. My husband also has SCLC. My husband never had to have radiation. Well, let me rephrase that...he opted not to have radiation on his brain since it would not save his life and all the research we read it could rob his of quality. (he could change his mind any day,but as of now he has said no) When you have SCLC that spreads to the brain it honestly spreads everywhere so they must radiate the entire brain which also kills good brain cells. It was nice to hear that your husband's cancer is limited and not extensive and pray that the aggressive treatment plan will eliminate the cancer. I wish your husband the best during treatment and Serenity is right as it is a roller coaster ride with so many ups and downs. Take care of yourself during all of this too. You mentioned they will put your husband on pain patches. My husband was put on those over a month ago and it has been a struggle to finally get to the correct dosage, but they finally seem to be working. I guess with my husband though they said the dosage could change overnight as his cancer progresses.
Keep us update and would be glad to answer any questions for you as not many people on the posting board have SCLC.
Serinty...nice seeing you on the posting board. I hope you are holding up okay.
Kim

Thank you guys for writing.
It makes me feel so much less lonesome, to know that there are other's who understand what it's like to go thru this.
Before January, I knew nothing at all about SCLC. (I didn't even realize there was more then one type of lung cancer!)
Now my brain is overwhelmed with all of it.
Kim, they've already mentioned radiation for my husband's brain, even though the Pet Scan of his head, (or MRI, I've forgotten which)- came out okay. I guess it's used as a preventive measure.
My husband is willing to try anything and everything to get better. I've read enough to know that SC cancer is one that will come back, even after chemo, but I don't think my husband "hears" that part, when the doctor is explaining it to him. He chooses to believe that he will be fine after chemo, so I go right along with that notion. I don't know what else to do. I try to stay very positive......It's hard sometimes......
Thanks, I appreciate you both. Take care of yourselves,
Nova

I will be honest with you as the honest answers people gave me when I was posting for my mother were the most helpful.

My mom had a week of radiation after she was finished with chemo, and the radiation was much worse on her than the chemo. She had a tumor wrapped around her trachea and they were radiating it not to save her life, but to make her quality of life (her breathing) better. It really really wiped her out. She could not walk a few days into the radiation. However, this could have been, and likely was, a cumulative result of chemo built up in her system plus radiation plus the progression of the disease.

She opted to stop the radiation because while it was making the tumor shrink, we could no longer get her back and forth without an ambulance and she was getting tired of all of it.

The good news is, they warned us about her sore throat and terrible pain swallowing, but it never came. She was okay swallowing and never felt too bad in that regard, or on her skin, either.

I'm so sorry you're going through this. As Kimslos said, keep asking questions. SCLC is more rare and not a lot of people have it, so it's good to know that there are people with firsthand experience.

Happy to answer any other question. Also glad your husband's is limited--that is good news.

Best of luck.

Thanks for responding. I'm sorry about your Mom..... This disease seems to rob everyone--the person who has it, and the caregiver's also.
I appreciate honest answers from everyone. I can research the cancer itself on the Web, but speaking with people who have actually experienced it, is so much better.
I've been feeling really isolated lately. I can spout out cancer facts and information right and left, but few understand how deep it goes to the soul.. to watch someone you love suffer...well, there's no way to explain it......
I appreciate your time.
Nova

Nova,
Oh it is good for your husband to believe he will be okay after chemo and my reason for saying that is since his is limited he might be one of the fortunate ones! It is good to stay positive. There is a gal here who comes to the posting board who had limited SCLC and she is cancer free and believe she is due for scans in April. (oh, I hope I got all that information correct) Her name is Pat but her posting name is Tuckygal. She is quite an inspiration to all battling the disease.
Has the doctor been upfront and honest with you and husband?
I need to finish helping my son with his homework and make dinner. You hang in there and I know the feelings you are speaking of so hope you don't feel as lonely now.
Hugs,
Kim

Nova,
Hi , I hope your husband is feeling well. I know the treatments can be very tiring for them. Your husband sounds like a fighter and thats great . Just know you are not alone and if you have any questions or just need to talk well be here:wave:

Kim,
I will be saying a prayer for your husband and that the patches keep working for him. When my mom was on them she still had to have breakthrough meds.Good Luck and you take care of yourself too. I know youve been battleing this with your husband for a while. God Bless

I also want to add that we had a lot of hope for Mom because her oncologist was treating someone who had SCLC who had outlived all the predictions and had defied the 2% rate...so he gave us a lot of hope to "beat the odds." There are people who do...there really are, so don't give up hoping that. My mother hoped until the very end. So don't give that up; you really never know. Please feel free to ask any questions you have as this board really helped me feel supported and not isolated when I was going through it.

Do you have anyone else to talk to about all this? It's a whole lot to handle alone.

Courtenynt,
Sorry your mom was not one of the ones who could have beaten the odds. They gave my husband 8-16 months and he is now on month 21. We feel so blessed to have had those extra months, but sad to say his quality is slipping a bit, but we just enjoy things a bit differently now. Since we cannot go out to dinner we pick it up and bring it back home if we want a dinner out. Stan has high hopes to surprise the guys at the business and go to lunch tomorrow. He tried to do it today, but just did not feel well enough. He said he felt very weak and shakey today.
Serinity,
Thanks so much, nice hearing from you! Yes, understand the breakthrough meds, which we have handy and believe he used them twice yesterday and once today. Didn't your mom pass away on Feb. 18th, 2006? (my dad passed away on that day too) Thanks so much for the prayers.
You all take care and Nova just drop a line when you feel the need!
Kim

It's very nice of you all to respond like you have.....thanks so much!:)
To answer your questions, Yes, the doctor's are being upfront with us. They haven't actually given us "Numbers", as far as "time left", etc., but they've explained that SCLC tends to come back, even if they've gotten the tumor to shrink drastically. They said it doesn't react as well if you have to have chemo a second time.
My family is very supportive of us, but they, (like me, in the beginning), don't understand much about the type of cancer he has. Everyone's first question is always "Why don't they do surgery and remove the tumor"? (That was MY first question too). The doctor explained to us, that studies found it actually makes it worse- (makes it spread faster), to have surgery, so that's not an option.
Thank you once again, I appreciate you all!
Nova
PS
Radiation starts today, with chemo tomorrow...5 hours of Cystplatin (sp?) mixed with Etopicide (sp?). (You would think I could remember how to spell the chemo drugs by now!!!!:dizzy: ) Please keep my hubby in your thoughts and prayers... he's nervous about the radiation starting, and is SO dreading the chemo, because now he knows how sick he'll be in a few days..:( .. Thanks.

I am so glad I found you all. You are an answer to my prayers. My dad has SCLC. he is going into almost 2 years with it. I am going crazy though cuz he lives in oregon and I am in Utah.
I have read everything there is to about this cancer. But it is really great to know that there are others out there going through the same things you are. I am sorry to hear about all your situations. Everything you say is so familiar. my dad started with a tumor around his trachea and then after many treatments of chemo and radiation he did pretty good. but then it came back and it is in his lungs and his brain. he has done more chemo and radiation to his brain. he is getting tired and worn out and I am sad i can't be there with him. I want him to move back here but he is stubborn and says there is no need, he's gonna make it. And I pray everyday he will but there is always that worry. THe Doctors say he only has about 6 months left. But he has made it far and he very strong. i pray he will make it much, much longer. Thanks for being here. My prayers are with you all!
:)

Flutter_by,
I'm sorry about your dad.... I'll keep him in my prayers, for sure.
I was wondering about the fact that most of the folks diagnosed with SCLC seem to have been given a "time-line" by their doctor..... Is this because they "requested" to know, or did the doctor just pop out and say "You have "blank amount" of months to live", etc?
They've never mentioned that subject to my husband or I. (We've never asked either, so maybe that's why?) Like I said, they mention the fact that it seems to come back, but they've never said anything about "time left"...:(
Thanks all,
Nova

Hi Nova,

My name is Carrie. :) I ask to getting a timeline, but his two dr.s said 2 different things. His radiation Dr. told me he doesn't have longer than 6 months that was in January. His oncologist told me he could live for up to a year. They don't really like to give timelines because everyone is so different with this cancer. My dad is going into 2 years. they have told me most people with this don't live for more than 6 months past diagnosis. Do they really know?
Just keep praying and have faith that he will get through this. I know my faith has grown tremendously throughout this experience.
your in my prayers and just stay positive, even though sometimes it may be hard. It is a rollercoaster ride.
talk to ya soon.....Carrie :)

Nova,
We asked the doctor when my husband was diagnosed since we have young kids we needed to be prepared and get things in order and be upfront and honest with them. You just don't know, but most people are shocked at how long my husband has survived given how many places his cancer had spread to by the time he was diagnosed. (given that small cell is so aggressive) Infact, my husband has 50, yes 50 lesions in his brain! They are very, very small but has them scattered throughout the brain. The doctor said someone must be looking out for him since none of them to this point have been in an area to cause harm. We know it could change overnight given the extensive amount of cancer in his body, but we try not to dwell on the "time" we have left and enjoy the time we are together. Stan is getting more impatient with the lack of quality. (I am too but don't let him know) He is due for scans in about 2 weeks since he just had his last treatment for his 5th line of chemo. He told me last night that he does not know if he wants to go for a 6th line since it is eating up his quality and each time it just is not working. If he has a good day though we enjoy it to the fullest!
I know that the first line of chemo Stan had was Cisplatin and Etopside and honestly that was the hardest chemo for him. I hope and pray your husband can stay strong while having radiation. I hope today was okay for your husband. Stay strong as he needs you.
Kim