SarahS Posted May 10, 2012 Share Posted May 10, 2012 My husband is a 34 yr old non-smoker diagnosed two weeks ago with SCLC. He is in the extensive stage because he has a malignant pleural effusion, an 8cm mass in the right hilar lung, a 6cm mass in the lower lobe of the right lung and several lymph nodes are involved. We started Cisplatinum and Etoposide this week. We lost his mother last year to adenocarcinoma (also a non-smoker). We are devestated. Our kids are 6 and 8 and we are scared. I guess I don't know the point of this post, I'm just looking for hope. Quote Link to comment Share on other sites More sharing options...
Nova Posted May 10, 2012 Share Posted May 10, 2012 Hi Sarah, My name is Nova and I was an every day visiter here a few years ago. You'll find the people here very helpful and kind. I'm so sorry that your husband has been diagnosed with SCLC. It's very scary in the beginning. Thinking back, I'd say it's important that you have a doctor that is really willing to take the time to talk and explain everything to you. If you don't feel comfortable with him/her, don't be afraid to find another one. I made the mistake of reading too much info on SCLC. It's good to be informed, but not to overwhelm yourself with too much, as every case is different, as are the side effects of the treatments, etc. If there's anything at all I can help with, please let me know. You're in my thoughts, Nova Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 10, 2012 Share Posted May 10, 2012 every breath brings hope !! has there been a treatment plan of any sort yet?? once you start treatments the fear eases up a little bit. things start to happen and you will see some results of the treatments. it helps calm the mind. this site is great for the emotional side of fighting the disease and the personal support of what kind of effects does such and such a treatment cause and I how do I deal with certain side effects and things of that nature. We do have a Lung cancer Oncologist who gives us medical support and info also.. His name is Dr Jack West at the swedish institute is Seattle Washington. Many members here are also on his site as well under the same screen names so you can get to know who is who here and there also. Here is the link to his site. He can answer the medical questions you might have about sclc and the treatments and what not.. click on the link to get his site to pop up for you and it is also free. http://cancergrace.org/. Like I said, we can give you the emotional and spiritual support you are looking for and he can give you the medical support. Dr. West is great about answering questions quickly, simply and thoroughly and his site is also Free!! Quote Link to comment Share on other sites More sharing options...
dianew Posted May 10, 2012 Share Posted May 10, 2012 Hi Sarah - I have nonsmall cell, so I can't speak directly to the small cell diagnosis, but I did want to welcome you. Although none of us want to be here, there are many nice survivors here as well as caregivers. Randy is correct, and once a treatment plan is in place most of us feel better. The diagnosis itself can be such a shock and it can take some time to just kind of absorb the information. As Nova mentioned, it is really better to stay away from reading statistics. They have nothing to do with an individual. Many of the current statistics are also based on old information. There are many new treatment therapies and options out there, and as you can see from reading some of the members' information, lots of people surviving and enjoying a good quality of life. Please keep us posted and feel free to come here whenever you want. There are many caregivers here as well who know exactly what you are going through. Diane Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 11, 2012 Share Posted May 11, 2012 I was a caregiver for almost 3 years so I know what your going through. Quote Link to comment Share on other sites More sharing options...
Petunia Posted May 12, 2012 Share Posted May 12, 2012 I am sorry that you have this in your life. My mother was diagnosed 3 months ago with ext. sclc. She s on her 4th round of chemo and so far the only side effects are hair loss and a little bit tired. She is starting radiation next week on some mets to her spine. I also agree that a good doctor can make a difference. We switched doctors after the first round of chemo because we did not feel he was doing everything he could. We are much happier now with the new doctor and I have seen my mother's spirits lift. This is a great website for support and advice. Everyone here is very helpful and they assure you that you are not alone. Hang in there and sending positive thoughts your way. Quote Link to comment Share on other sites More sharing options...
SarahS Posted May 12, 2012 Author Share Posted May 12, 2012 I'm just so angry. My mother in law died last year from adenocarcinoma and now my husband has small cell. My kids are little, 8 and 5. I just feel lost. We started Chemo last week....1 day of cispatinum and 3 days of etoposide. He is tolerating it well so far. He is just exhausted and has thrush from the brochoscopy and steriods he is on. He still looks healthy. He's a big, tall, muscular man. I don't understand how this happens. We are being treated at Indiana University Cancer center in Indianapolis and are heading to Northwestern in Chicago this week for a second opinion. We are talking about MD Anderson in Houston, but wonder if they will just tell us the same thing since it seems there isn't a lot of options with small cell. Quote Link to comment Share on other sites More sharing options...
Nova Posted May 13, 2012 Share Posted May 13, 2012 You have every right to feel angry. It's not fair, it's uncalled for, it's cruel....Even now I don't understand why it happens to so many 'good' people. My son was 13 when his dad was diagnosed...your babies are even younger. Please feel free to PM me if there's anything at all I can do. You're in my thoughts. Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 13, 2012 Share Posted May 13, 2012 if your not happy seek the second opinion!! better safe than sorry!! Quote Link to comment Share on other sites More sharing options...
Petunia Posted May 14, 2012 Share Posted May 14, 2012 Anger is the correct word; I feel the same. We are now going to a dr. in New York so I would suggest the second opinion. Our new Dr. was just "up" on everything available for sclc: cisplatin, neulasta shot, radiation, pci (preventative brain raditaion) and he does the correct tests (bone scans, ct-scans, brain mri.) It is such a different world since diagnosis... tests every week, dr. appointments, highs and lows. There is hope out there for beating the odds so hang in there and be strong! Quote Link to comment Share on other sites More sharing options...
SarahS Posted July 3, 2012 Author Share Posted July 3, 2012 We are still hanging in there. He has had 3 rounds of cisplatin and etoposide. After 2 rounds, the tumors had a 75% reduction in size. We were thrilled with this result! He is maintaining his weight and is tolerating chemo extremely well. The only real side effect is baldness mixed with some slight tiredness about a week after chemo. We are hoping for NED after the next few treatments and are hoping for 6 rounds since he is tolerating it so well. After chemo, we will probably do prophylactic brain radiation and will consider chest radiation at the primary site. It is amazing how this disease can change you. We no longer strive to be the best in our careers. We strive to be the best parents and spouses we can be. I appreciate every day and we celebrate each birthday with new resolve and vigor. This is the worst and the best thing to ever happen to us. Our faith has been restored and we trust in God more than we ever have. Quote Link to comment Share on other sites More sharing options...
dianew Posted July 13, 2012 Share Posted July 13, 2012 [/it is amazing how this disease can change you. We no longer strive to be the best in our careers. We strive to be the best parents and spouses we can be. I appreciate every day and we celebrate each birthday with new resolve and vigor. This is the worst and the best thing to ever happen to us. Our faith has been restored and we trust in God more than we ever have.quote] Sarah - It isn't mentioned too often, and people who don't have it would find it hard to believe, but there is an upside to cancer and you have obviously found it. It sounds as though your husband is doing really well with the treatments. I am so glad to hear how well he is doing. Please keep us posted. Diane Quote Link to comment Share on other sites More sharing options...
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